(Monday, February 05, 2007) Editing this post a bit to include my experience because I’m noticing that people aren’t really reading my Related Posts at the end. Let me make a couple of points first.
Note: Please realize that you are online. By its nature, the Internet will draw women having problems with fibroids and looking for answers. Women with great Lupron treatment experiences probably aren’t posting about it online. I discovered this when looking for information several months ago. I was alarmed by the disproportionate number of negative Lupron experiences and decided to start a blog with a more balanced perspective. Hopefully, I’ve come close to that.
Second point. I have a post about the bell curve. (Actually, there are a few women on the site that mention it.) A bell curve is a very good way to think about any fibroid treatment. Some women will land on one end of the curve or the other but MOST will fall in the middle right under the bell. MOST women who take Lupron will benefit from it. MOST will have limited side effects.
Here’s my experience.
From the post that describes my first month on Lupron:
*Recap: Had a period (7 days) with clots and cramps about 2 weeks after the injection. Continued to spot every day afterward. Occasional headaches (possibly from anemia).
*Recap: Passed huge clots without cramps the day of the injection. Continued to spot every day. Passed smaller clots without cramps on several occasions. Night sweats without the sweat. Just the heat.
*Recap: Continued to spot every day. Passed tiny clots with cramps on several occasions. Hot flashes. No sweat but yes, they were hot!
So yes, when given this choice between:
- bleeding profusely, becoming more anemic, and eventually saying okay to a blood transfusion or
- bleeding some, having a few hot flashes, and no longer continuously feeling faint,
I weighed the benefits (preparation for surgery) against the risks (side effects), squared it with my mind, body, and spirit and picked #2! Three months of Lupron. No regrets.
I’ll also include the 8-page Patient Information Report for the 3.75 mg monthly injection. It’s a PDF file so you need Adobe Reader to view it.
Now, back to the original post…
One of the visitors to this site is about to start Lupron shots for 3 months. Since there have been a couple of comments about injections, continued bleeding, and side effects, I decided to create a thread to stick in the Forum. You can follow the details of my personal experience (hot flashes, night sweats, etc.) as well as read other information in the Related Posts at the end but I will include a short timeline:
1st Lupron Shot – middle of February
Last multiple day period – end of February
2nd Lupron Shot – middle of March (continued spotting/bleeding)
Last Lupron Shot – middle of April (continued spotting/bleeding)
Spotting/bleeding finally stopped – end of May
Next multiple day period – end of June
Time between my last Lupron shot and my period = 10 weeks
Time between my “periods” while on Lupron = 4 months
Excerpts from visitor posts: (Click the link to view the entire comment.)
Saragail: I’ve just completed my third round of Lupron. It’s been about 1 month and 2 weeks since my last shot, yet I haven’t started my period.
C.: I took Lupron 4 years ago and am currently searching for information about it. I still suffer memory problems from my 6 months on Lupron.
nanci: Had first lupron shot on 6/17 after having a few months of heavy periods and clotting. also had the feeling of a very full stomach. although the bleeding has basicallly stopped(still have very slight bleeding)
My advice:
Have a clear understanding in your mind about why you are taking it. Know that the treatment can be beneficial but is not perfect. Make sure you have a support system that allows you to contact a health care professional with your questions.
If you have thoughts, questions, or a Lupron experience, please leave a comment.
[Edited to add: I created another post that will (hopefully) shed more light on GnRH agonists and the side effects of this drug class: Tell me about Lupron, Synarel, and Zoladex (gonadotropin-releasing hormone agonists) ]
——————–
Related Posts: (Yep, spent much time writing about my Lupron experience.)
Life under the bell curve
What the heck is a gonadotropin-releasing hormone agonist?
Get support from nurses during your Lupron treatment
Deciding on my Lupron Depot injection dosage
That first Lupron injection in February
My second Lupron injection in March
The very last Lupron injection in April
Lupron is neither heaven nor hell
Iron pills, Lupron injections, and the return of little Miss Perky
October 27, 2006 at 2:31 pm
I just got Lupron shot #2 two days ago. After #1 I had a hard, heavy period that lasted for over 3 weeks. Now I’m still spotting but I think it is on the wane. Hope it stops but I see I may be on the same perpetual-spotting path that our dear Geek experienced over her 3 months of treatment. No menopause symptoms yet at all. I think there has been some shrinkage because I can lie on my belly more comfortably than before. The biggest tumor up high & forward doesn’t feel as hard as before – doc said it can make them “spongier.” The 2nd shot made my arm extremely sore for 2 days, which radiated to my shoulder & neck, but it seems to have abated. I just talked to the ExAblate nurse and she says I have to be scheduled for the procedure as quickly after the 3rd shot cycle (28 days post-injection) as possible before the fibroids start to “bloom” again – unfortunately that would be right before Christmas – not convenient for anyone! So, she suggested I get a 4th Lupron injection to tide me over & keep me “shrunk” until I can get down there in January, for the best result. I sure hope this stuff really does the job it’s supposed to, because the thought of having to take 1 more of them than normal kind of puts me off. The real proof will be when I get another MRI in December to see if they really shrank like they were supposed to. I’ll check back in when I get injection #3 – maybe things will have really changed by then!
October 29, 2006 at 6:53 pm
Thanks for the details on your Lupron experience. “Perpetual-spotting” sucked but I made it through. Just kept focusing on the big picture. You could always listen to my U2 fibroid theme. I like it for its “this too shall pass” quality.
As far as the extra injection, just monitor yourself during this whole process. Call and seek medical advice if anything seems strange. You know you can also always post here if you have questions or concerns. Take care and keep us updated.
November 15, 2006 at 10:18 pm
Did anyone experience weight gain with their Lupron shots? I’ve gained 5 pounds in 3 days since the first shot.
November 16, 2006 at 4:14 pm
Keep in mind that initially your estrogen level will increase during your first two weeks of treatment. It starts to fall after that. I would not be suprised by weight gain in the beginning. I personally did not notice because I had gained so much weight from life that I was purposely avoiding scales at the time. I will say that the injections improved my anemia and increased my energy level. After my second injection, I started moderately exercising again and dropped weight while on Lupron.
November 21, 2006 at 8:26 pm
I recieved my first lupron shot Oct. 26,2006. I go Nov. 27 to get my second shot. I did have hot flashes the first couple of nights, and the last week I seem to get a headache every evening around 8:00. As far as weight goes, my doctor put me on Welbutrin XL when I started Lupron. The side effects of Welbutrin are weight loss, and it helps with depression and anxiety. I wasn’t depressed but the doctor thinks the medicine may have kept me from getting depressed and I lost 5 pounds the first 3 weeks while on Welbutrin. Good luck out there.
November 22, 2006 at 12:26 pm
Crystal,
I hope the hot flashes and headaches are better now. Post again if you have other thoughts or any concerns. Best wishes with your second Lupron injection.
November 27, 2006 at 12:25 am
I have just had my 4 Lupron shot and have started bleeding heavy! My cycle had already stop and I’m not cramping like I’m menustrating, I’m just bleeding. I wanted to know if any one has had this problem?
November 27, 2006 at 8:39 pm
Hi Angelwings1p,
Sorry you started bleeding again. I basically had the opposite problem. I kept spotting and bleeding just about the whole 3 months I was on Lupron. I expected my cycle to stop and became nervous when it didn’t. I felt better after talking to the nurse assigned to my case and my doctor a little later. With Lupron, sometimes there’s a range of what’s considered “normal”.
Continue to post your questions here but give your doctor a call just to be on the safe side.
November 30, 2006 at 10:38 am
I just had my 3rd Lupron injection, and my period has been a constant “dribble”, but certainly nothing like the gushers I used to have. I also stopped taking progestin which helped with the bleeding over the years, so that may be a factor too. When I told the ExAblate nurse coordinator that I’d had no menopausal symptoms yet and was still spotting, she immediately asked me if I’d had a uterine biopsy & been cleared of uterine cancer that might cause bleeding. (I had one a year ago in prep for being considered for ExAblate – it’s a standard screening procedure to diagnose for excessive bleeding.) But, I take heart in reading The Geek’s & others’ posts that their experience with Lupron is similiar and I must be patient. I do think some shrinkage has occurred, but cannot tell how much – I just feel more comfortable on my belly, pee less often & am less bloated. I am getting a 4th shot because I’d be “ripe” for ExAblate just before Christmas – very inconvenient – so am getting one more to get through the holidays & ready for zapping in January. Cannot come soon enough!
December 5, 2006 at 9:28 pm
Hi Ruth,
Your talk of “dribble” brings back memories.
I’m so excited about your upcoming ExAblate procedure in January!
December 27, 2006 at 2:42 pm
Well, had my 4th & hopefully final Lupron shot last week. Final MRI before I go for ExAblate is next week. Praying for some reduction in size so the ExAblate will be more effective. I have had only minor bleeding about every other day. Once each cycle I got about 4 days “off” with no bleeding at all, but mostly it still “dribbles!” I honestly do not think I’ve had any hot flashes. Definitely no mood swings or weight gain (even over the holidays – how can that be?!!) My arm was sore at the injection site for 5 days though. My “buddha belly” doesn’t seem any smaller to me. Only with the detail in the MRI will we know for sure, I guess. Hoping for a Christmas Miracle here!
December 28, 2006 at 5:45 pm
Hey Ruth,
Last Lupron shot? Yay! I solved that “weight gain over the holidays” problem by just not cooking. Although, I do plan on cooking a pot of black-eyed peas for New Year’s Day.
You will be in my thoughts next week. Thanks for keeping us updated and best wishes with everything!
December 31, 2006 at 5:28 pm
Hello my name is Kathryn and I too fave been bleeding on Lupron. Received my first injection on December 6th. Bled very badly for 2 weeks and then tapered off to a lighter bleed. Yesterday was a good day with primarily just spotting but today more of a bleed. It is scary when you bleed when the purpose is to stop the bleeding.
I had a uterine biopsy done as well that came back clear two months ago.
Going in for a vaginal resection of a large submucousal fibroid followed by an ablation on January 10th. I am aneamic once again so hopefully I can build my blood up with the heavy dose of iron that I am on.
ElecticGeek what procedure did you have done after the Lupron?
So it is considered “normal” to continue bleeding on Lupron?
Any advice is most appreciated…..feeling tired and worried.
Kathryn in Vancouver, BC
January 1, 2007 at 6:17 pm
Hi Kathryn,
Can’t say that continuing to bleed while on Lupron is normal but I wouldn’t consider it abnormal. If you feel overly concerned, talk to your doctor about it.
My fibroid “MasterPlan”:
I did not want major surgery and was not concerned about fertility. My first choice was UFE. The Interventional Radiologist was concerned about a couple of submucosal fibroids and consulted with my GYN on the best way to handle the problem. That’s why I needed the Hysteroscopic Myomectomy (vaginal resection) to shave down those two. Had to take Lupron + industrial-strength iron pills to get my blood level up for the HM. So…
3 months of Lupron (Feb. – April 2006)
Hysteroscopic Myomectomy (June 2006)
Uterine Fibroid Embolization (July 2006)
My GYN originally offered ablation as an option. I think if I didn’t have the subserosal fibroid growing on the outside attached to a stalk, I probably would have done the ablation/resection combo. Somewhere on this site, I left a comment about not all fibroids being created equally. Fibroid location is definitely something to consider.
Here are a couple of posts you can visit to read about recovery experiences:
How are you feeling after your Hysteroscopic Myomectomy?
How are you feeling after your Endometrial Ablation?
If you have any additional concerns or questions, please post them. Best wishes with your upcoming procedures!
January 1, 2007 at 10:41 pm
Thank you so much for your response. I have read through some of the past discussion forums on your site and find the information very informative.
Today I am having a good Lupron day as should have my normal very heavy period at this time and today just had some slight spotting and the only other symptoms I have had beside the bleeding and anemia are the hot flashes at night time only.
I hope that the fibroid has shrunk enough for me to have it resected. I am now doing resarch on the ablation as I also would like to reduce my menstrual flow that was heavy prior to fibroid days. The only negative I see so far about ablation is that it may be hard to detect uterine cancer in the future. So this is a concern.
You yourself must be feeling great after all you went through last year. I too am on massive amouts of iron and I am sure that once my hemo is at a normal level I will feel very energetic again one day.
Thanks again and Happy New Year
January 2, 2007 at 4:56 pm
Hey Kathryn,
Don’t be freaked out by the initial heavy bleeding after your first Lupron shot – it actually fires up your estrogen production into overdrive (causing a lot of extra bleeding for about 2 weeks) and then signals your hypothalmus to halt estrogen production when it senses the overage – sounds kind of mechanical, I know but that’s the science of how it works. When you get to shot #2, you’ll start noticing a difference. You may stop altogether, or you may do the “daily dribble” I’ve had, but my periods are way less heavy, painful, and inconvenient after 4 injections than when I started on Lupron in Sept. Hang in there – this too shall pass. No more anemia, and I can use a single Kotex Super pad for 1-2 days now instead of only 2 hours – now that’s progress! Give it a bit more time and I bet you’ll be surprised at the changes. Seems like everybody’s different, except for that initial scary “jolt” of bleeding they (hopefully) warn you about.
January 3, 2007 at 1:22 am
Thanks Ruth….actually I was not told that I would bleed like that. Good thing I went to my GP for a blood test because my hemo significantly dropped and now I am trying to build everything up again for my resection in one weeks time. At present it is too low. I am only supposed to receive the one injection of Lupron.
It seems that a few ladies on this board did not “dry up”.
Thanks Ruth,
Kathryn
January 3, 2007 at 5:21 pm
For the truly geeky, visit these Lupron posts:
Life under the bell curve
What the heck is a gonadotropin-releasing hormone agonist?
January 3, 2007 at 7:45 pm
Kathryn:
I know a number of women don’t stop bleeding but I can’t tell you how common this is. Like I said before, I wouldn’t consider it abnormal. The nature of the Internet tends to draw people who are experiencing problems. Most women with good Lupron experiences probably aren’t searching online for Lupron info so that makes some of this seem a little skewed.
It’s good that you found out about your hemoglobin level. Best wishes in getting it back up and preparing for your resection. You’ll feel better once it’s back up. We’re pulling for you!
Ruth:
Thanks for the words of encouragement and the mini-science lesson.
Glad your symptoms have improved. Yay!
January 17, 2007 at 12:02 am
Hi,
My Dr. would like me to take two lupron shots, one now and the other in three months. He believes this would make survey easier. Any ideas of how I will feel?
January 22, 2007 at 6:03 am
Hi EG!
Thought I’d take a step outside the ['alternative' thread] and let you and everyone else know about my experiences with Synarel. US doctors seem to prescribe Lupron in the form of a shot, whereas I took Synarel, which I guess is a similar product, for six months by nasal spray, which seems a far less painful alternative! Drawbacks (aren’t there always?!) being that one had to alternate nostrils morning and night, and not mess up the sequence. MAybe you USA sheilas cant be trusted! Just joking, I mucked it up a couple of times and ended up with spotting! I did have a couple of periods also, but they were nothing compared to ‘the good ol’ times’-'drying up’ is a relative thing for some!
My major complaint regarding the drug, would be my coming ‘off’ it after my AM surgery. I experienced weird visual migraines as well as hot flushes, mood SWINGS-I thought I was going mad-so many spontaneous episodes of tears/anger/frustration. My PMT also returned with a vengance-my boobs have never been so sore! I’ve had heart palpitations, dizzyness and awful tinnitus, which my doctor cant say whether is caused by the drug or my anaemia, which is still lingering despite treatment. It is now 10 weeks since my surgery/taking the drug, and I’m more that glad that they are both finished with…for now……
[Edited by EclecticGeek to add link. Hope you don't mind.]
January 22, 2007 at 6:07 am
Oh yeah, I forgot to mention that the fibroids, bless them, grew their little hormonal hearts out, despite six months of the drug, which I was taking to shrink them. The specialist just shrugged his shoulders and suggested I was an anomaly. So what price this drug in the future?
January 22, 2007 at 7:18 pm
joy:
I have a post that explains Lupron. You can check there for more details:
What the heck is a gonadotropin-releasing hormone agonist?
The possible side effects of Lupron include hot flashes and sweats, headaches, depression, diminished libido, generalized pain, vaginal dryness, and breast atrophy. These are just possibilities. I experienced some hot flashes and night sweats. These weren’t too bad because although I felt the heat, I never ended up drenched with sweat. The perpetual spotting kind of plucked my nerves. I thought I would stop bleeding while on Lupron but that didn’t happen for me. I will say that it did slow my monthly bleeding enough that (in combination with iron pills) my severe anemia was reversed. I could actually feel my energy level increasing while on Lupron.
Let us know if you have other questions or concerns. Best wishes.
getjules:
Hey!
USA sheilas can’t be trusted, huh? Too funny.
I remember reading about Synarel (nafarelin) when I was looking for Lupron (leuprolide) information several months ago. Same drug class but slightly different chemical structures. I’ll leave a couple of Wikipedia links for the truly geeky who just can’t resist taking a peek:
Chemical structure of Synarel
Chemical structure of Lupron
My injections weren’t bad. I barely felt them but I received my shots in the hip instead of arm so maybe that makes a difference. Nasal spray is a cool option.
I had heart palpitations and felt dizzy/faint while suffering from anemia so I’m sorry to hear you’re still dealing with that. The Synarel may not have gotten those dang fibroids but the AM sure did. Glad you are on the other side of your surgery. I wish you well as you continue with your recovery!
January 29, 2007 at 7:03 am
Hi my wife just had surgery to remove the endometriosis as the surgery began it was found one of her her ovaries had to be removed also. I just wanted to comment and ask a question. I don’t see any posts in any forums about men and their concerns for their wives as I am with my mine. I’m very worried about her at all stages of this time in her life especially because she’s a very small/petite woman and with the bone loss and weight gain it concerns me. Are there any women that have had minimal side effects and are there any success stories without all the horified stories that I’ve read from a couple of these websites. My wife is scheduled for an appointment Wednesday 31 Janurary 2007 to see the doctor again after electing not to have the Lupron shots because of the side effects. Please anyone, with any positive outcome let me know!
January 29, 2007 at 10:31 am
Hi David,
My DH is just as concerned as you but he is not too computer literate.
I do not have the same story as your wife as i do not have endo but I did have one injection of Lupron. I only needed a 1 month one time injection so my side effects were minimal. I had a large fibroid removed still keeping my uterus in tact.
I have a girlfriend who suffers from endo and she is taking Syranel Nasal Spray for her endo. Apparently this can have less side affects and where Lupron is an injection and once in your body it is there until its course runs out, Syranel is taken on a daily basis and I guess if she had side effects that were severe she could simply discontinue its use.
I take it the doctor is looking for a solution for her to manage the remaining endo. How extensive is her endo? How old is your wife and is she trying to preserve her fertility?
Kathryn
January 29, 2007 at 8:34 pm
Hi,
I’m off work recovering from a myomectomy. I also took Synarel via nasal spray for 4 months. It is a pretty good introduction for what’s in store when I finally reach menopause! I stopped bleeding finally, but if I forgot one spray when ruching off to work I would get spotting and other wierd cramps and cotton wool head disgusting, but all bearable. The Synarel worked a treat form y fibroid shrinking it by about 30%. I found this site because I was having nasty symptoms after stopping Synarel treatement; headaches, period-like pain, eye stuff. I’m less than a week out of hospital. Does anybody know how long these “coming off” symptoms last? I with I could be provided with more information regarding these funny little anomalies. I’m just assuming that the headaches are my hormones kicking back in.
January 29, 2007 at 8:58 pm
Ooops! Sorry about the numerous typos in the above entry (just enthused about finding this site)!
One other thing; after stopping the Synarel, I have also had palpitations: all hormonal I guess, but nevertheless, disconcerting.
I would apperciate any feedback.
Thanks.
January 31, 2007 at 6:38 am
Hello and thanks Kathryn.
I really appreciate your rapid response. I’ll let my wife know what you said. The appointment is today so this is great timing from you. Once again thank you so much. To answer your question of how extensive was her endo, she had a large softball sized removed and a smaller one as well, plus the removal of the damaged ovary as I mentioned in my first writing. You know It’s like I feel her pain and the emotional stress that she’s going through with trying to make the right choice about this proceedure, I’m doing what I can to help her get through this. God, I love her so much and I hate seeing her in pain at any given time. By the way she’s in her mid 30’s and yes we want to preserve her fertility, because I want her to have our first child and I want a baby boy but we have to wait til after the healing is done.
R/
David
January 31, 2007 at 8:18 pm
Hello David,
I did not see your entry when I first found this site. I made a choice to take Synarel nasal spray because like you I was concerned about the side effects of injections and the fact that I could not reverse them once they were injected and possibly suffer a month of unwanted symptoms. My wonderful doctor suggested the nasal spray and told me to build up the dose slowly over a period of weeks so I could assimilate it properly and gradually. I had also read numerous horror stories about Zoladex and Lupron and had real reservations. Nevertheless, the good news is that the Synarel was really tolerable, any effects were minimal and managable, no weight gain and apparently the bone density problems are reversible and more a concern for long term users. The only hitch is coming off this; I’m suffering headaches mainly, and I’m hoping that this will be very short lived. Perhaps Synarel is a possible alternative to think about for your wife.
Hope this helps,
Sunday.
February 1, 2007 at 11:28 pm
Hello everyone
So happy to find this site. Just so unhappy with lupron . getting 2nd shot tomorrow. Seems like am achy all the time , like muscle ache. Always some where from wait down . It that normal ???
Thanks
Out Fab
February 2, 2007 at 11:53 am
Hello [Sunday],
sorry for the delay. We’ll the doctor convinced my wife and I to go forward with the injections and she had her first one on the 31 after a long talk with the doctor. Hey thanks everyone, especially you Kathryn for your valued advice and personal things that you’ve encoutered with the Lupron. Well, now my support for my wife in even more now and standing by for the effects that she will if face any. Take care everyone. I’ll check back again soon.
r/
David
[Name edit by EclecticGeek for consistency.]
February 5, 2007 at 12:12 am
[Sunday]!!! Thank god I’m not the only one! I am now 12 weeks into my post Synarel phase, and dont really have any of the ‘withdrawal’ symptoms anymore, I had all the same disturbing side-effects as you did-I thought I was having a stroke when having what my doctor dismissed as visual migraines. He blamed everything on the anaemia-not the drug. I felt differently, as you do know your body, and I’d never had heart palpitations in my life. I’ve researched and found NOTHING that suggests these symtoms when withdrawing from this drug, so it’s great to know I’m not a medical anomaly.
Meanwhile, cheer up, things should improve for you in the next few weeks when all those hormones ‘kick in’. My first period, post AM surgery was awful by the way! Dont mean to be a downer!
Cheers!
[Name edit by EclecticGeek for consistency.]
February 5, 2007 at 6:10 am
Hi out there. Please tell me if you have side effects with the lupron…did you have your surgery? I had my third lupron shot…i’m expiriencing vision problems, I edfeel sore all the time my spinal column hurts, pain all over my body…I’, getting forgetful, I cannot sleep at night….my feet and hands are swollen…feel like a old woman…tell me please if this symtoms will subside after operation…..how do you feel? please write me back
February 5, 2007 at 7:28 pm
Hi all,
I just had an ab myo 6 days ago and I feel like I’m recovering pretty well. My big concern today is that I realize my hair is falling out in clumps…it has been coming out in the shower in the past months, but more so since the surgery. I had two Lupron shots (mid November and mid December…almost 2 months ago). I realize hair loss can be a symptom of Lupron…when will this end? Does anyone know how long it takes to get Lupron out of your system? Will my hair grow back? I’m a little freaked!! Thanks for your help.
Jess
February 5, 2007 at 7:49 pm
getjules! thanks for getting back to me. Its great to know that these symptoms eventually go; they’re pretty nasty!! I rang my gyn yesterday because I wanted to know for sure if all was normal. I’m seeing her tomorrow, but she seemed to agree that all of these strange things are hormonal. My headaches are pretty bad. I had ocular migraines during two of my pregnancys too, (only in the first trimester, whilst my estrogen levels were stabilising) and they were really disconcerting: half of peoples faces just disappeared, then I would get zig zags flashing in the corners of my eyes (thoughts of stroke too) Went to neurologist who said that she sees women with this kind of migraine at puberty, menopause and pregnancy and that its estrogen related (she should have added after Synarel). So getjules, watch out if you get pregnant, just be prepared for the eye migraine again.
Take care,
Sunday.
February 6, 2007 at 12:09 am
Hello Everyone,
I took my third lupron injection Jan. 9,2007 and I have not had any side effects since November. I have even lost 16 lbs. My gyno says I can start trying to get pregnant Feb. 9th. Dave I have endo and the left overy is ate up with endo. So I took the lupron for 3 months and my doctor says I should be able to still get pregnant now. I already have 2 children 5 and 3. I’m 25 and the lupron injections didi’t hardly bother me at all. Only with the first injection did I really have any side effects, so maybe you and your wife will luck out. Good luck to everyone. I will let you know if we succeed getting pregnant.
Try to be positive,
Crystal
February 6, 2007 at 12:19 am
Synarel and Lupron,
They sound like the names of superheroes!!
February 6, 2007 at 7:38 am
Jess, i saw your comments here on Lupron and i gotta tell ya, i went for a second opinion over the summer and she had suggested Lupron therapy before AM surgery. I was given the box with shots, but opted out of it. I started reading and reading and reading about the possible side effects and i chose not to do it because hair loss, although they say temporary, was not a choice for me. So i stuck to the NYU specialist and just had the AM…….
I dont know much on the Lupron, but from what i read, some women have no reaction at all but some do. there are several websites on Lupron therapy i will try and find some for you and comment back so u can read up.
i hope you are feeling better today
Gab
February 6, 2007 at 12:07 pm
Edited the original post some on yesterday. I think visitors are missing that I was on Lupron for 3 months and have 11 separate posts on this site about it (including this one). Lupron was definitely on my brain. It’s one of the reasons why I started my blog. Please take a moment, scroll back to the top and reread this post. Thanks.
Thanks everyone for sharing your experiences and helping each other!
David:
You are right about the Internet. Unfortunately, it tends to draw people with negative experiences so you end up thinking just about all drugs and surgeries are bad. That’s why I started my blog. Wanted to present more balanced information. There are risks and benefits with all treatments.
I started a post for people with loved ones going through this. Although the post is centered around fibroids, I did create it with you in mind. Please feel free to leave your thoughts there as well:
Do you have a loved one dealing with uterine fibroid tumors?
Thank you for being such a source of support for your wife. Best wishes.
Kathryn:
That’s why I ended up getting 3 monthly injections instead of one injection that lasts 3 months. I didn’t want it in my system that long just in case the side effects were bad. Fortunately, my side effects were more irritating than anything else. Synarel and Lupron have very similar chemical structures and both work the same way. It’s just a matter of dosage and how the drug gets into your system. There’s also an implant (Zoladex).
[Sunday:]
I know my heart palpitations were from my anemia because I had those well before I started Lupron. Not quite sure about the headaches. I did have headaches while on Lupron especially in the beginning. I thought that was also remnants of the anemia but it could have been the Lupron. I do still get headaches now but they seem to be period-related. I get one a day or two before my period starts. I guess that falls in the “estrogen-related” category.
I think it took a couple of months to rid myself of the side effects of Lupron. I was focusing on preparing for and recovering from my Hysteroscopic Myomectomy and UFE so I didn’t track Lupron effects as closely.
Superheroes? Too funny!
Out Fab:
Generalized pain is a possible side effect. Talk to your doctor about your side effects. I was assigned a nurse through the ScriptAssist program. She called me after each injection to check on me. I told her EVERYTHING I experienced.
getjules:
Anytime you manipulate hormone levels, things can happen. You aren’t an anomaly. Just special!
Estrogen is but one factor with fibroids. These GnRH agonists will shrink them to some degree in most cases but not all. There’s that bell curve again.
ana maria:
Talk to your doctor or a health care provider about your symptoms. Some are probably related to the Lupron but some (like spinal pain or swollen hands and feet could be related to the fibroids).
Jess:
I didn’t experience hair loss but my hair is so short that I probably wouldn’t notice anyway. It took me a couple of months to get rid of the side effects. There’s a chance that it will take longer. Hang in there. It does get better.
Crystal:
I also try to stay positive. I really needed the Lupron and I’m glad I used it. My side effects were irritating but waaaay better than the hell my life had become with the fibroid symptoms. No regrets. I also dropped weight while on Lupron because I finally had enough energy to work out. Not sure what my excuse is now. Congratulations on losing 16 lbs!
Gab:
I have a bunch of posts here (11) about Lupron. One stop shopping! Here’s one that explains exactly how it works and includes links to other sites:
What the heck is a gonadotropin-releasing hormone agonist?
[Name edit for consistency.]
February 8, 2007 at 5:07 am
Thanks EG, I like to feel special! Synarelgirl. ‘cept the ‘S’ should be positioned on the front of some baggy sweatpants.
Jess, I also lost alot of hair, although, I dont know whether it was from the AM surgery and the reaction to the anaesthetic, or from the Synarel. Anyway, my hair loss has stopped, thankfully, and I’ve just had it coloured and dyed…so not bald yet! As EG says, it does get better, but at the time, it feels demoralizing…something else to deal with. As if having a uterus full of fibroids and bleeding like a stuck pig wasn’t enough!
[Sunday]. thanks for the tip. Something to look forward too! I didnt know that eye migraines existed. Funnily enough. I experienced my first one when trying to add to this blog! A pregnancy is something that I hope can happen with or wihtout the bloody migraines.
[Name edit by EclecticGeek for consistency.]
February 11, 2007 at 1:50 am
Hello all,
I thought I would just check in and say that I am now 3 1/2 weeks post myomectomy. I think the Synarel (same as Lupron, but taken as a spray) is finally clearing from my system. My headaches have settled down and so have the other funny symptoms.
I am really happy that I took the Gonadotropin-releasing hormone agonist, because it worked!!! My huge mango fibroid shrunk down to a tennis ball size and that made my surgeon’s job easier, safer and with less threat of haemorrage.
The side-effects were tolerable, (what’s a hot flush between friends?), and I felt pretty good throughout.
Sunday.
February 14, 2007 at 1:08 pm
Crystal, Thank you for letting me that there is some hope for me and my wife to get pregnant.
Electricgeek thank you for the blog and the additional blog as well. I’ll visit there also.
All, Please hang in there and take care. So far my wife has not had any side effects other than headaches since the first shot on Jan 31st 2007. I’ll visit again soon to let everyone know if there’s any changes especially good ones for those who want to know the good things to report meaning less side effects than expected.
R/
David
February 16, 2007 at 5:52 am
Hi, anybody out there is Synarel Lupron land?? Gee this thread is slooooow!! I’m returning to normal cycle and my moods and hormones are singing out loud and clear!!! You know one good thing about being on Synarel for me is that (being a sufferer of mood swings and PMT), I felt really even keeled emotionally and the fact that I was not losing so much blood each month meant that I was less tired. I hear many post menopausal women feeling relief about not having the grumps for a week prior to their periods. This is the up-side of the treatment.
February 16, 2007 at 2:27 pm
[Sunday:]
Yeah, I know. Our community is getting larger and that is great. The down side is that I can’t respond to comments as quickly as I like plus continue to blog and work on other fibroid-related projects. I’m trying to do all I can to get others to migrate around the site more and post.
How are you using your fibroid voice?
The real issue with fibroids
My Thoughts
We are experiencing growing pains but things will improve. In the meantime, please know that others reading your experience appreciate the honest, balanced information even if they aren’t leaving comments. I thank you for them.
Glad you are feeling better. I know when my energy returned while on Lupron, I was a happy camper!
getjules:
You are funny. The big “S” on the sweatpants made me laugh.
Being on Lupron can be hard. For some, the side effects just aren’t tolerable. I understand that. For others, the side effects are tolerable but the stigma attached to using Lupron is so great (fueled by online negativity) that these women just give up. I refuse to allow that to happen here. Whatever treatment option a woman has picked, I want her to have a positive place to visit. Not all sunshine, roses, and chocolate but discussion of some pretty serious issues in a supportive way.
Sorry for the soapbox moment but this has really been on my mind recently. Best wishes!
David:
Great news about your wife. Update us when you can and thanks again for being a source of support for her.
[Name edit for consistency.]
February 16, 2007 at 11:38 pm
Hi
I started lupron 20 units 12 days ago for IVF treatment. I haven’t got my periods. It is 31st day from my last cycle. Is that common not getting periods in this case?
Thanks
February 18, 2007 at 7:49 am
Hi everybody, I’m almost3 weeks post ab myomectomy, and about 2 months post my second (and last) Lupron shot. Does anyone know when one should expect to get a period after Lupron? My doctor says “I don’t know…maybe sometime in February.” I’m definitely not having hot flashes or serious mood swings anymore,, so I feel like the Lupron is leaving my system. Any ideas are appreciated.
Jess
February 18, 2007 at 7:53 am
Madhu, I think that is common for the Lupron to stop periods as it puts you through a false menopause. After starting the Synarel (similar to Lupron), I had one last period and then my cycle stopped completely. You may find that you still get one more period.
Sunday.
February 18, 2007 at 7:56 am
Hi Jess,
I am almost 5 weeks post ab myomectomy and I still have’nt got my period yet either. Hmmm, perhaps it just takes time for the old bod to get back into the swing of normal cycles??
I’d like to know too!!
Sunday.
February 18, 2007 at 9:06 am
SUnday and Jess – its not so uncommon not to get your period for a while after a AM. if you combine an AM with the re adjustment of hormones form Lupron along with the re adjustment of hormones from fibroids removal (rememebr those things are estrogren pumpers) you just need to give your bodytime to heal and get back to normal.. HUGH impact in general on yoru body having an AM…dont forget that fact
It took me 6 months to get back to “normal” with my periods post AM.
Hope your recovery goes well
Madhu – from what I understand form my sister (who went throug IVF) the Lurpon is oftern used to stop altogehter of control your periods so doc can critically estimate ovulation and all that. If you have questions make sure you write a list and ask your RE. A lot happens during ICIVF…be informed.
February 19, 2007 at 8:25 pm
does any one have hair loss with the injections. i mean alot of hair coming out?
February 19, 2007 at 8:52 pm
Hi Carla,
I didn’t have any major hair loss, but I certainly have heard of it happening. I had hair loss after pregnancy; it’s all hormone related.
Sunday.
February 20, 2007 at 12:42 pm
Carla I did have some hair loss while Lupron was in my system…and I had MAJOR hair loss for about 10 days after my surgery. Today is 3 weeks post-surgery for me and my hair is not falling out as much. My doctor told me it was stress/hormone related and that it would stop.
Jess
February 21, 2007 at 7:46 am
Hi fibroid free,
you know how you mentioned that fibroid are estrogen pumpers, could you please explain more? Have you been told that fibroids produce their own estrogen? I hadn’t heard this before I read it from you, I had only heard that they are sensitive to estrogen and grow during times of high estrogen in the body, such as pregnancy. You see, I was a normally slim person, but sinse my fibroid grew, my weight has changed and I am slightly overweight and find it really hard to lose is. I also have an underactive thyroid and this also makes it difficult to lose weight. Perhaps everything has been exacerbated if the fibroid itself produces estrogen.
Sunday.
February 21, 2007 at 3:05 pm
I created another post that will (hopefully) shed more light on GnRH agonists and the side effects of this drug class:
Tell me about Lupron, Synarel, and Zoladex (gonadotropin-releasing hormone agonists)
Here’s a quote:
Please read this post. A lot will make much more sense afterwards.
Madhu:
I found some info on the Jones Institute’s site:
Basically what fibroid free said. Controlling events to give you the best chance. I’ll also suggest speaking with your RE if you are concerned.
Best wishes!
[Sunday:]
I can’t speak directly for fibroid free but I think she’s referring to the fact that fibroids are thought to have more estrogen receptors than “normal” uterine tissue and therefore would attract/hold/contain more estrogen.
Because we are women, more estrogen means more padding. It’s what makes us voluptuous and irresistible. Padding (that little extra fat) also causes changes in hormone levels. It’s a vicious cycle. The estrogen causes you to retain weight. The weight causes you to “retain” estrogen. Estrogen is one of the things that causes fibroids to grow. You can see how easy it becomes for things to get really out of whack.
On the flip side, once this gets under control, it’s easier to lose weight. I am happily finding this to be true in my case post-treatment.
[Name edit for consistency.]
February 21, 2007 at 9:27 pm
Thanks EG, that’s very informative, perhaps I will lose a little of my irresistable voluptuousness soon!!
Thanks,
Sunday
February 23, 2007 at 1:12 pm
I had 3 Lupron shots, and other than some bearable hot flashes, I only had one complaint that I really haven’t seen listed here. A few days after the first shot I developed numerous hot, tender, welt-like areas on both legs. I had experienced this before, during pregnancy–superficial thrombophlebitis(surface vein blood clots/inflammation).
My Gyn denied it was related to the shot, but insisted I be seen by my regular MD the same day. They did a thorough ultrasound of the deep veins and all was well. It took about 3 weeks for the worst area to heal up. I was apprehensive about getting a second shot, but by then my Gyn decided it was the boost in estrogen levels that occurs right after the first shot that set it off. Whew, I wasn’t crazy after all! I had the second and third shots with no further difficulty.
Incidently I was put on Aygestin(Norethindrone) to combat some of the symptoms caused by the Lupron. Not sure if that is standard procedure, but it was the way it was done at that particular office. The random hot flashes lasted about 2 months after the last shot. Bleeding was heavy after the first 2 shots. After the 3rd shot the bleeding stopped for 4 weeks, and then light to moderate for 30 days. Then surgery…I was ready!
February 23, 2007 at 9:51 pm
Apparently Synarel and Lupron can up the chances of blood clots and although it is rare, it is something to keep an eye on. My father was having a similar hormone treatment as me for prostate cancer and we were on the phone comparing hot flushes!!! Very amusing. The doc told my dad (who is 80) that clots can be a complication and just to keep exercising and move that blood around tha system on a regular basis.
Sunday.
February 25, 2007 at 8:12 pm
I had a 3 month Lupron shot about 3 weeks ago. I’ve had lots of side effects- everything from inflamed lymph nodes, flu like symptoms and sore breasts to a terribly heavy period. I’m used to bleeding a lot but this was frightening. So far my fibroids haven’t reduced but I’m hopeful.
Ruth, if you’re out there I’d so love to talk with you. I had one focused ultrasound surgery 9 months ago which wa unsuccessful. The Lupron is preparing me for a second one with a different doc who thinks he can help, and that the combo is far better than just the surgery alone. I would love to hear your experience.
Do any of you know if calcium supplements and exercise have an effect on how much bone loss you get? I am small boned and trying to do everything possible to stay as healthy as possible but I seem to be one of those who gets a lot of side effects. It was good to note on another site that side effects and their intensity don’t have any bearing on how successful the treatment is.
I also wonder- if your fibroids are huge (mine are) can you feel them shrinking as your treatment proceeds? When? How much?
Thanks so much geek for a balanced forum. I can’t bear to look at the negative ones. Too terrifying, and I’m a dedicated optimist looking for hope.
February 25, 2007 at 8:26 pm
In reference to hair loss a few posts back…I was told it can also be due to low iron, so between the anemia and hormone ups and downs I was losing quite a bit. It actually slowed down on the hormone supplements and Lupron for me. Surgery/anesthesia also didn’t seem to make it worse, thank goodness!
February 25, 2007 at 9:21 pm
I could notice my fibroid getting smaller especially when lying flat on my back where it would stick out most. Quite a dramatic change and I knew my fibroid was shrinking
February 26, 2007 at 2:29 pm
Hello! I have had several problems with Endo. after my 3rd surgery my doctor put me on Lupron. Honestly my side effects were not that bad, not as bad as I expected anyways. I completed the treatment & my periods became somewhat normal again. 1 year after being off of Lupron I became pregnant after my doctor had told me bc of previous surgeries pregnancy would be very difficult. I am now 3 1/2 months along & have realized I have several fibroids again. They are quite painful but so far have not affected my pregnancy & I pray they will not. I highly recommend Lupron if you want children & your sypmtoms minimized. It is not a cure all but a very good alternative..
February 27, 2007 at 2:57 pm
Thank god I found this post, I recevied my first 3 month Lupron shot 2 weeks ago and have been braced for becoming a bald-weepy-psychotic-celibate-sweat-machine !!
I’ve struggeled with Endo for 15 years, 3 laps, R tube/ovary removed, an unmentionable amount of ER trips for HUGE Septated Cysts and 3 unsuccessful ZIFTs
I continued to put off this therapy because of (read para 1). Then, Saturday morning in front of my adopted 2 year old son, I fainted from the sharp pain of ovary torsion due to a 7cm septated cyst.
What was I holding onto? irritating symptoms for 6-9 months is so minimal compared to a lifetime of pain and medical uncertainity! The FEAR my son felt watching his mom fall put things into perspective. FINALLY. I’m stubborn, unyielding and determined.
I’m glad I found your ‘positive’ site and HOPE my story will touch someone else who may not yet have ‘their perspective’ yet.
Week 1 lightheaded and carb cravings
Week 2 lightheaded, carb cravings and evening headaches
Any advice on Week 3-4 for me?
February 27, 2007 at 3:01 pm
PS I apologize for that link to a career portal. My intent was not to advertise, cookies auto filled in the URL and I did not catch it.
March 1, 2007 at 2:00 pm
I am about 10 weeks after my last Lupron shot and I am 4 weeks after my abdominal myomectomy. I was terrified during my Lupron days that my hormones would not come back….and today…finally…I got a period….the first since November….I guess that means my hormones are back? I’m so happy, but still cynical and worried, but I guess this means things are on their way to normal again? God, “normal again”…I don’t remember how that even feels.
Jess
March 2, 2007 at 6:14 am
Jess, I know it sounds weird but welcome back to normal. I embraced my first period as a sign that everything was working. Never been so glad. But normal may be different for you now? Here’s hoping… I think I’m clear of the Synarel now, no side effects fromt he hormones coming back anymore.
That helped enormously keeping me on an even keel mentally and physically. Channel that stubborness and determination into your healing. It can only help!
Laura J&J mom
I didn’t really have any major problems on Synarel…it was after surgery and I had stopped taking it that the ’side effects’ kicked in. Good luck with your endo treatment. I looked after my diet more closely when taking Synarel, no wheat, no dairy, lots of phyto-oestragen ‘greens’ and calcium containing nuts, and no alcohol
My fingers are crossed for an uneventful pregnancy for you Telisha…
March 2, 2007 at 8:10 am
I’m not back to normal yet, my whole body is telling me that my period is about to begin, but nothing happens and I remain in a sort of pre-menstrual limbo. My gyn said that Synarel takes some months to get out of the system and I know this, and yet there is a little voice in my head saying “you have been thrown into a really early menopause, honey”. Not the case, I think, but I really wanted to get my first period over with before going back to work and I hope it’s not too painful. I’m 6 and a half weeks post op.
March 5, 2007 at 1:56 am
Oh Sunday, I really feel for you…fingers crossed that your period will come soon.
I was warned also that it takes a while for it to leave your system, but my body seemed to want to do it’s own thing before the op, where I had a few periods and spotting on the drug. Your first period may not be painful at all, they may have given you a ‘good clean out’ in surgery, and your uterus is taking a while to build up and repair itself. Fingers crossed…
March 7, 2007 at 7:00 am
Hey getjules,
No period!! My gyn said all the Synarel should be out of my system by now. But I think that the effects of the drug have still a lingering effect and my body has not yet readjusted. Rats!! She told me to go back and see her if nothing has happened by the end of April.
How are you feeling??
Yay, Jess, a welcome period!! I’ve forgotten “normal” too. I’m not particularly missing my period, but I would like it to come back – eventually.
Sunday.
March 9, 2007 at 11:30 am
Sunday, I was telling myself that I would go see the doctor to check my hormones if my period came any later than it did. Mine came after the doctor predicted it would, so I was worried. Can’t they draw blood and check hormones? iI’M SURE YOU ARE FINE…but I get it, the waiting and wondering is hard. I felt like I had to do that FOR MONTHS with this fibroid….and then with the period…when will that stuff stop?? Here’s to hoping we all find “normal” again.
Jess
March 10, 2007 at 9:20 am
HI I am taking the Lupron 3 month shot and just noticed that I am losing some hair. I have a patch about the size of a golf ball missing. I am really scared and would like to know if it will continue to fall out. Please some one let me know. because every since I seen the first spot I have been worried about it a lot. Then just last night I noticed that there is a spot coming out in the front of my head, i really need some advice.
March 13, 2007 at 1:47 am
Samantha,
Have you been back to see your doctor yet? Perhaps the levels of hormones are wrong?? I would want to know if it was a normal, temporary side effect; it sounds like a lot of hair.
Good luck with it and please let us know what the outcome is as I’m sure others would want to know.
I’m sorry that I don’t know more, I lost a heap of hair after my pregnancys, due to hormone changes and that was normal, but no bald patches.
Sunday.
March 13, 2007 at 6:39 am
I lost hair too…for about 2 weeks after surgery. I thought it was due to the Lupron. My doctor said it was a combination of Lupron and stress. My hair has stopped falling out now. Good luck Samantha…let us know what your doctor says.
Jess
March 14, 2007 at 9:42 pm
hello … been off lupron for 2 weeks only finish 3 months didnt really help still had cramping 2 weeks before suppose to get period and 1 week after my period did stop but on top of that the symtoms of the shot stoped and still havent got period back when can i start getting pregnant
amy
March 15, 2007 at 3:28 pm
Amy, I think the “when can I start getting pregnant” question is one for your doctor. But about getting your period again…my last Lupron shot was December 15th and I didn’t get a period until March 1st.
Jess
March 15, 2007 at 8:21 pm
I got my first Lupron shot last Friday and I have to say that things have not been bad at all. I’ve had a couple of migraines, but I get those anyway, and when I got the shot I was onI week 2 of a period, but the blood loss, cramping didn’t get any worse – I’m on week three of the period now, but today it looks like things are starting to slow down. Mood is fine, no hot flashes. I’ll keep you all posted.
March 16, 2007 at 12:07 am
I did the Lupron shots and it was the worse 6 months of my life….I went thru lots of depression and anxiety attacks. Hope it works better for you.
March 19, 2007 at 9:56 pm
Hello Iam 36 yrs old female I had a fibroid on my uterus , I got the lupron shot on oct 31st 2006 and I had surgery on Jan 30 2007, I still don’t have my period, I still have hot flashes and gain 5 pounds already, does anyone can give some advised about what I need to do about this.
Best regards,
March 21, 2007 at 8:05 pm
Hi Maria,
I only just got my period after being on Synarel sinse last September and having an AM on Jan 16th. I thought it would never come back, but it did. My surgeon told me to wait until Easter and then if my period hadn’t come back then I would need a blood test to check my hormone levels.
Sunday.
March 27, 2007 at 8:56 pm
Thank You Sunday for your comments, I just got my period I never been so happy about it , but after 5 moths without it I feel relief to start back to my regular life.
Thanks,
March 28, 2007 at 5:20 pm
Will someone tell me how long I have to wait to try to get pregnant after a six month period on Lupron. My life has changed 100% from Lupron, and I am so worried about never getting this stuff out of my system!!! I have my second surgery on April 13th, and I really don’t know what to expect after that!
Please help!
March 28, 2007 at 11:18 pm
I have the some problem..when will my period come, I have never been so anxious to have one… i got my shot back in october of 06. I have not been the same! I want my life back! I have two childern, but would like to have more one day… whats the longest someone had to wait? Will it come back??? or am I looking at a lawsuit here? lol
April 2, 2007 at 8:59 am
Jamie, I started synarel (similar to Lupron) in October and have only just had the one period. I finished the course of synarel in January. Perhaps you need a simple blood test to make sure your hormone levels are normal; that would have been my next move if my period had not arrived.
Sunday.
April 4, 2007 at 6:27 am
Hey Sunday!
Sorry it’s been so long…Yippee re the period! Are you about due for another? With the moon full earlier this week and my muffin top ‘full’, I guess I’m due now. Happy Easter… My family are inferring that I was ‘less than pleasant’ during the hormonal rush following surgery, but at least I feel more in control of my emotions these days.
Good advice re the blood test. Am going in for a battery of tests soon to see how everything is progressing…
April 6, 2007 at 7:47 pm
Hi everyone! I was so glad to find this site last night
- I am due for surgery on the 1st of June for a suspected Fibroid on the back of my Uterus and have been scouring the net for information….I even downloaded the video of the laparoscopy and viewed it over breakfast – fascinating….and terrifying at the same time.
My Gyn put me on Synarel 2 weeks ago to prepare for surgery – it will hopefully shrink the tumour to make it easier for surgery. Up until 2 days ago I felt weird – hot flushes, headaches and really, really ditzy! (vague…lilke leaving my credit card with the check out chick and walking into walls – very embaressing!)
- but I must say that now I am actually feeling probably the best I have for a long long time!
I wasn’t keen to take it as I don’t like to put stuff in my body unless absolutely neccesary but it finally was the only option left so I ‘embraced’ my issue as best I could and am now just focused on getting it all over and done with.
I tried acupuncture for 2 months before Synarel but although it gave temporary pain relief which was fantastic, and also unblocked my colon, it just frankly got too expensive unfortunately. My Chinese Doctor who performed the acu, was sure he could shrink the fibroid (my local GP was horrified at such a claim!) – I wish I could have kept it up to see if it would work, because I felt great after each session.
When my tumour was first seen (last year May2006), a doctor who I see for regulation of my hormones through ‘nature identical drugs’, put me on a variety of more drugs and was convinced it would shrink the tumour if not completely get rid of it – so I didn’t do any research and just paid a hell of a lot of money (it was my brithday present that year!) and waited until December last year when I saw a Gyn for the 2nd time and found it had grown from 3 centermetres to 7!
In January 2007 this year it was 10. Hmmmmm …. needless to say I stopped the ‘nature identical drugs’ (although I must add this doctor had helped my significantly in the past – this one just wasn’t going to work).
From the first Gyn who wanted to rip out my entire Uterus and ovaries – (!!!!! – I am only 27!) and had no sympathy when I cried at the thought in his office.
To my now lovely caring and empathetic expert Gyn who will perform the surgery and do his best to preserve my fertility…
to all my firneds and family (who do mean well, but frankly my mother-in-law really needs to shut her mouth – when I told her my decision to go for surgery, she asked me 3 times if I had actually talked to anyone professional about the decision – REALLY!)
So – here’s to no more pain every day of my life and horrible all nighter’s when I’ve my period – and nerve racking intercourse..waiting for the searing pain that often accompanies that – trying to not show it as well ..very difficult – poor husband!
– and here’s to this site which has now provided me with a safe and welcoming arena to express my situation without fear of judgement, disrespect and criticism. -THANKYOU! …. I feel much better now
April 6, 2007 at 8:17 pm
I got my second shot today – still no discernable side effects!!! So far this Lupron thing is going okay. An interesting thiing about Lupron and moods….. I have been treated for years for familial depression and have mostly been at a very even keel – I was really worried about the “mood altering” side effects that I had heard about with Lupron and discussed them with my psychiatrist. She told me that in her experience, women who were already taking medication for depression and who had the depression under control, didn’t seem to suffer as much from the mood side effects (because you are already on a mood stabilizing medication that works for you). She thinks that in women who may have untreated depression, the Lupron may “bring it out”. Don’t now if this is correct, but with me, so far so good!
April 7, 2007 at 4:23 am
malexmom,
I heard from my Gyn that Synarel (which is similar to Lupron) can have a side effect of depression because of the hormonal changes baught on by the medication, so it makes sense that untreated depression could be ‘baught out’ by the medication. can I ask what ‘familial’ depression is? I was also concerned about taking the Synarel because I have in the past needed anti-depressants for Post Natal Depression and wondered if Synarel could promote that pre-disposition I have had before – I am also finding that ’so far so good’, and am glad to hear it is that way with you, goodness knows we don’t need anything else to deal with at present!
April 7, 2007 at 6:07 pm
Hi Eleanor,
Familial depression just means that depression runs in my family and so that mine probably has a genetic basis as opposed to situational. If you are prone to depression (because of the post-natal variety, therefore probobly at least hormonally driven) you should be alert for any signs of lowered mood – tell your doctor right away if you notice any signs of depression. I’m really glad things are good with you so far – I’ll keep posting about my experience, please do as well!
April 10, 2007 at 4:45 pm
Eleanor–I was pretty resigned to an ab myo, yesterday I saw my doc and she reviewed my ultrasound and sonohysterogram results with me. She said my uterus is enlarged and she would like to use Lupron to try and shrink the fibroids, and the hemorrhagic ovarian cyst on my left ovary. How effective do you think this will be and as for the side effects I’m kind of scared. I am one of those people that they prescibe something to and I get all the side effects. I am looking forward to a relief from the symtoms, but I had putting this stuff in my body. I have to have a bone density this Fri and then she said call the office when my cycle starts to schedule my first injections. I feel so confused and overwhelmed. My doc said she wants to try this option first prior to surgery, but I feel like, what happens when the treatment stops,do I then have to go through the surgery. She is hoping she can totally shrink them, especially the ovarian cyst. I just want to get on with my life and have all of this behind me.
April 10, 2007 at 4:48 pm
Eleanor–I meant to say I hate putting this stuff in my body.
April 13, 2007 at 4:37 pm
Second time around on Lupron, no hair loss, but extreme weight gain, started the shot at 149, I will not disclose current weight, no cycle yet last shot Feb.14….really don’t believe the shot helped with the fibroids,
April 14, 2007 at 3:01 am
Raquella, as I said on another post, the treatment (Synarel nasal spray) worked really well for me. It shrunk my fibroid by one third, and made it easier for the surgeons to remove it and lowered the possibility of having a hysterectomy which I wanted to avoid. So there are positive outcomes for this drug. I was so put off after reading some of the very scary and negative comments I found on the internet during research before deciding to take the Synarel.
Sunday.
April 16, 2007 at 8:57 pm
I had my first short of Lupron Depot on April 2 which was the last day of my normal period … I started a second period on April 6th, which has now lasted 10 days.
On April 11th, my head was hurting so badly and my heart felt like it was going to come out of my chest… the anxiety is unlike anything I have ever experienced, dizziness, nervousness … hot flashes, blurry vision, no appetite, food tastes funny … they rushed me to the ER … gave me valium which slowed down the anxiety .. indomethecin which minimized the headache … I have had these severe symptoms for almost a week now with NO end in sight … has ANYONE experienced this nightmare???
April 17, 2007 at 3:42 am
Hi Michelle, this sounds awful!! I did get bad headaches from the Synarel, which lasted until my body adjusted to the drug. Perhaps this is all you are experiencing.
Have you told your doctor about this? Did you tell the ER that you had taken Lupron? If not, perhaps you should seek further advice.
This is some info taken directly off a website about the side efects of Synarel. Look further than this info, but take care because you seem to be experiencing pretty extreme side effects. I know you are not taking Synarel, but Lupron is similar.
Good luck,
Sunday.
What drug(s) may interact with Nafarelin? (Back to top)
•cimetidine
•herbal or dietary supplements, like black cohosh, chasteberry, or DHEA
•female hormones, like estrogen
•male hormones, like testosterone
•methyldopa
•metoclopramide
•prasterone
•some medicines for mood or mental problems
•reserpine
•nasal spray decongestants, such as phenylephrine (Neo-Synephrine®) or oxymetazoline (Afrin®)
Tell your prescriber or health care professional about all other medicines you are taking, including non-prescription medicines, nutritional supplements, or herbal products. Also tell your prescriber or health care professional if you are a frequent user of drinks with caffeine or alcohol, if you smoke, or if you use illegal drugs. These may affect the way your medicine works. Check with your health care professional before stopping or starting any of your medicines.
What side effects may I notice from receiving Nafarelin? (Back to top)
Side effects that you should report to your prescriber or health care professional as soon as possible (some only apply to women):
•breakthrough menstrual bleeding
•chest pain
•continue to have a regular menstrual cycle
•difficulty breathing
•rash
•severe headache
•visual changes
•vomiting
Side effects that usually do not require medical attention (report to your prescriber or health care professional if they continue or are bothersome) (some only apply to women):
•body odor
•breast swelling or tenderness, or decrease in breast size
•decreased sexual desire or ability (impotence)
•depression, or mood changes
•dizziness or drowsiness
•hot flashes (sudden feelings of warmth or sweating)
•muscle and joint, or bone pains
•nasal irritation
•nausea
•skin problems (acne)
•swelling of the feet and legs
•vaginal discharge
•vaginal dryness
•weight gain
Pituitary apoplexy : During post-marketing surveillance, rare cases of pituitary apoplexy (a clinical syndrome secondary to infarction of the pituitary gland) have been reported after the administration of gonadotropin-releasing hormone agonists. In a majority of these cases, a pituitary adenoma was diagnosed, with a majority of pituitary apoplexy cases occurring within 2 weeks of the first dose, and some within the first hour. In these cases, pituitary apoplexy has presented as sudden headache, vomiting, visual changes, ophthalmoplegia, altered mental status, and sometimes cardiovascular collapse. Immediate medical attention has been required.
April 18, 2007 at 10:10 am
Michelle:
Check this page:
Tell me about Lupron, Synarel, and Zoladex (gonadotropin-releasing hormone agonists)
It explains how the drug works. Initially, your estrogen level increases before it starts to fall. That could explain your second period.
Some of your symptoms actually sound like severe anemia. Since you are having a long second period, this is a possibility. I have an entry about that as well:
Uterine fibroid tumors and anemia?
I had severe anemia and the symptoms were horrible. Think about getting your hemoglobin level checked to eliminate anemia as a possible problem.
Sunday:
Thanks for the detailed info!
April 20, 2007 at 2:12 pm
Michelle—I had posted a reply to you, but being the super computer genius that I am, can’t find it (laugh). Please let me know how you are doing now? My doc and I have been going back and forth over the Lupron issue. I am scared to death to try it and she feels like it will be a great option. My system has always been so susceptible for everything, I just don’t know what to do. Every woman’s body is so different. I do hope they can get to the bottom of what is going on with you. best of luck. Write back soon.
Raquella
April 24, 2007 at 12:48 am
Raquella – I feel for you at this time trying to make a decision about what to do. It is important to educate yourself about the options but at the end of the day, you do what ever you have to do to survive. When I was deciding about my options, I had to try and create a ‘value’ system, to weigh up the pro’s and con’s. There is a risk with medication, surgery and also not doing anything at all about the problem. It helped me to look at how much the fibroid has been disturbing my life so far, the pain and impractile issues (I have 2 young children and they need me around!) (oh….hang on also a husband who also at times needs me…) and so although surgery is risky, there are far riskier surgeries that people have every day. I don’t want to loose my fertility but I have had to resign myself to the possibility of that for the sake of my everyday health. Everyone deals with things differently I suppose and it is a very personal thing. The thing about the medication, … I was not keen to take it as I also hate putting things into my body, but the reality was, I was downing an unhealthy amount of codiene anyway every month and I didn’t want to keep that up for life.
So far the medication has not been too bad, but I really don’t like it and have decided to boycott menapause later on in life if this is anything to go by! – but I know that if I want the best possbile outcome in surgery, I need to take this to shrink it to lessen the bleeding etc. So, I try and be in a bit of denial sometimes about how much I am really not happy at the moment and just keep thinking, “well it could be a lot worse I suppose” – It’s still important to acknowledge how you are feeling though and I struggle with that as those around me are sick of hearing about it I think. I think actually I will start a journal instead. Anyway, I am now getting carried away!
So, it’s Your decision and Your body, – I encourage you to go with your ‘gut’ on this (no pun intended)
anyone – has anyone seen black flying things since being on Synarel or Lupron? This morning I could have sworn there were 2 black birds flying though the kitchen and sometimes my head and eyes don’t feel like they are connected to me properly , like they are lagging behind or something?
April 24, 2007 at 4:44 am
I have 5 or 6 fibroids the size of marbles. Two are embedded in my uterine artery, therefore the Dr. says it’s an extremely dangerous procedure and does not recommend trying to surgically remove them. I’m 39, and the Dr. feels that a hysterectomy is too agressive right now. I’m not sure if I’ll ever have more kids but would like to preserve my uterus as long as possible. My other option was Lupron which I decided to try. I got the first shot on 04-20-07, which was three days after my three week long period finally stopped. Instead of having a period one week out of the month, I’ve been having heavy periods all month long with only a week of not having a period. It’s taken over my life and I’ve gained weight. I’m hoping Lupron will stop my periods, but after reading some of these posts I’m now not so sure. I just started my period again today (sigh). Here we go again…I’ve had no side effects from the shot yet. I got mine in my hip. It was a month long shot. If I do okay with it my Dr. has me lined up for two consecutive three month shots after this. I didn’t know about the hair loss stuff. Now I’m nervous about that! I’m going to try not to think about it though since stress could play a part in hair loss! If anyone has an experience similar to mine, please leave a post. I’ve gone through such long heavy periods for so long, it would be nice to be rewarded by not having any for a while. Has Lupron worked for anyone having the shots I’m getting as far as making periods stop entirely?
April 24, 2007 at 5:16 pm
Eleanor—-Thanks so much for your response. First of all I would like to say, if I have to go the Lupron route, I hope I can handle it with as much grace as you. I have quite a bit of time to think it over, you’re right there are risk with everything involved in fibroid treatments. I have a second opinion scheduled for tomorrow. If this doc also suggest Lupron, then I have to place my fears on the shelf and go forward. My doc really believes she can shrink mine down to nothing, since they are multiple, but small. Plus the ovarian cysts and 11 week uterus.
Scooby–please continue to write in about your Lupron experience, since I may have to take it also. It helps to read real life experiences. Stay strong and I hope your experience will be favorable for your fibroids.
Thanks, thanks, thanks,
Raquella
April 25, 2007 at 1:05 am
Scooby – I am on Synarel which is simialar to Lupron and I have not had a period since I first went on it (although when I was due I got bad cramps – don’t know how that works!) I think that it can be so different for every person and you never really know how it will go until you try it. – that is scarey but sometimes we have to jump into the deep end for the possibility of a good result., Good luck with you journey!
April 26, 2007 at 2:41 am
Eleanor, the black flying things sound a bit like an optical migraine. These can happen during hormonal changes, and perhaps this is what’s happening to you? I was experiencing bad headaches and funny eye symptoms not long after I started and stopped Synarel. I also experienced optical migraines in early pregnancy, zig-zags in the corner of my eyesight and half of my field of vision just disappearing – strange stuff, but all related to estrogen levels changing. I went to a neurologist during pregnancy, just to make sure all was fine, and was told it is quite a common thing. Hope you’re not seeing ghosts!! Is your house haunted?
Sunday.
April 26, 2007 at 10:46 pm
Sunday, that seems to make sense as I have been also getting pretty bad headaches also. – I hope it’s not ghosts
when you had your optical migranes, was the vision change accompanied by a headache also?
April 27, 2007 at 6:05 am
Eleanor, the visual stuff happened first, and only lasted a short time, then a dull headache which was hard to shift continued for about two days after. Yuk, but so much more tolerable when I knew it was just a hormone imbalance and nothing sinister.
Sunday.
June 8, 2007 at 6:51 pm
I wanted to write about a good (if you can say good ) experience with the Lupron shots.
I’ve read this site often to help me decide what to do about my fibroids. I have a bizillion of them and will need to have laproscopy and abdominal myomectomy to remove them but I don’t have the time to recover from a surgery right now. As a short/long term solution I’ve opted for the Lupron for 6+ months. My RE says women can be on it for years but I’m going to try 1yr just until I can get time to have the surgeries.
I remember reading that no one ever reports about a good experience so I wanted to make sure I told how things are going for me.
I had my first shot last month. My doc put me on Norethin Ace 5mg to help with the menopausal side effects. I’m also taking calcium supplements 2x a day and 50mg iron to help with my anemia. The first week I thought I would bleed to death. I was changing my super plus tampons every 1-2 hours for 3 days. Then it lightened up. I spotted for another week and then it stopped. My emotions were a wreck the first week. I’m not sure if it was the lupron or if I was just depressed that I was having a real inconvienent heavier than normal period.
I have had hot flashes (which are a real bytch), but that’s about the worst of it. I have the occasional dizzy spell but maybe once a week. No hair loss or weight gain. I’m paying close attention to my diet to make sure it’s balanced and I’m not overeating. I’ve had the occasional mood swing but no major depression. Once I remind myself it’s the lupron, I usually snap out of it. I took my 2nd shot today and even learned how to do it myself so I don’t have to waste time with a doctors visit. It’s really not that hard and it doesn’t hurt. There are no signs of spotting and I’m excited that I’ll conquer my anemia now.
I’ll try to report back next month if there are any changes.
July 14, 2007 at 12:05 am
I just finished 6 months of Lupron. Aside from unbearable hot flashes, which vary in frequency with no discernible reason, Lupron has been great. I no longer bleed three weeks out of four (as a matter of fact, I haven’t bled for 5 months), I have no more pelvic pain, and…joy… NO PMS–no bloating, no mood swings! I’m now waiting anxiously for my periods to return (although I didn’t miss them one bit), and am a bit worried the fibroids will just grow back. Would I do the Lupron again? I dunno. The hot flashes alone are enough to scare me away, but considering the alternative (hysterectomy), I think Lupron’s a pretty good route.
August 19, 2007 at 2:05 pm
I am 6 mos. post procedure (MRguidedfus). Before fus, I was treated with a 3 month shot of depo-lupron. I had 3 large cysts. (13.4×10.4×13.6 cm; 5.3×4.8×4.7 cm and 2.8×1.6×2.8 cm), with the overall size of my uterus at 17.5×10.4×13.4 cm.
The depo-lupron was a miracle for me. It shrunk the cysts with minimal side effects. I had night sweats and that’s about it.
The MRguidedfus procedure itself, was surprisingly painless. Cramping during the procedure, but that’s about it. I was thrilled to be there and get it taken care of. I had the most amazing nurse and doctor at Central Texas Exablate…I’ll never forget how wonderful they were/are, especially Leslie Preston. If you can make the trek to this location, I can assure you it will be worth it!
Since the MRguidedfus, my lower back pain has been eliminated; my periods are not as long and not nearly as heavy.
My reason for writing is two fold. I’m writing to share my experience and hopefully help others…as well as learning from others about their experience. More specifically, how long it takes for the cysts to shrink after fus? I have 3 cysts that were treated…and as I understand, larger than most other women’s cysts, so I understand that I may be on the curve. (I’m just so tired of looking 4 months pregnant). I understand that because of my particular condition, it may take up to 12 months before these triplets (as I refer to them)…shrink enough for my stomach to flatten out…?
Thanks!
Carrie
October 11, 2007 at 8:23 pm
I am getting ready to take my first and only Lupron shot next week. Can somebody please tell me what I can expect initially and PLEASE tell me more about how these hot flashes feel and does everybody get’em. I am really terrified of hot flashes. Also, did anyone get vaginal dryness?
Also, how long does it take your period to come back. I am trying to zap this fibroid and make babies!!!
October 13, 2007 at 6:10 pm
Hi TK, note that a lot of people don’t post here… so you may want to take your question to the other thread!
Anyway, I don’t have lupron hotflashes, but I have menopausal ones… they vary a lot from woman to woman… some worse than others…but I get hot and sweaty at the drop of a hat. I always wondered why some older women carried around fans… it seemed affected… now I know! Sometimes it seems to be triggered by something a little stressful as well. My sister would put a cold cloth on her forehead. I just sweated it out… learned to wear layers…
it’s not the end of the world, just uncomfortable.
I don’t think I’ve had night sweats, but I’ve known women that get them so bad they have to change their nightgown and sheets! One of them used to fold up a sheet under her side of the bed and then she would just remove that and get back into bed… A trick I learned if I had a flash at night was to just stick a bare foot out the side of the bed, amazing how it would cool me off without making me too cold (especially after being sweatty).
October 14, 2007 at 10:04 am
Thanks Amy for the advice…I will post at another thread and hopefully avoid these side effects.
October 14, 2007 at 11:33 pm
Hey Everyone,
I’m almost 20, and I took my first shot of Lupron in January, right after I had surgery for endometriosis I had just found out I had along with PCOS. I took my second and final shot in april. I’ve always had about a two-two and a half month lapse between perriods since I started at age 12. Last year I was put on birth control to help regulate my period. Since my last shot in april, I saw my doctor in August for a check-up, and my period still had not started yet. He gave me a prescription for birth control again, but doesn’t want me on it until my period starts. He also told me that it should start withing 4-6 weeks. It’s been over 9 weeks since my appointment. I called his office two days ago, and I expressed my concerns that my period still had not started, and he told me that he wasnt really concerned about it at all right now, and that we could talk more about it come January when I see him….However, December will mark a year since I have not had my period (and I still have small hot flashes every once in awhile), and 7 months since my last shot. And even though my doctor isn’t concerned, I am–and I’m wondering if I have a reason to be concerned, or if I should just wait it out? I know I am not pregnant, so that’s not even an option….but being 20, when I am married I want to know I have a chance of getting pregnant…which these shots I was told were to help with my pain and help me have more likelyhood of becoming pregnant. I don’t that much about what is normal about period timing and what not after the shot. I was just curious if anyone has suggestions or ideas because I’m really at a loss.
October 25, 2007 at 7:44 pm
Hi everyone,
I have been bleeding almost non-stop since May….finally had an ultrasound this week and discovered very large fibroid on top of uterus…..my doctor suggested Lupron and I had my first (3 month injection) on Tuesday…..after reading all these comments I wonder if I should have done more research before getting the injection — I am 50 and my blood count shows I am starting menopause.
October 26, 2007 at 7:37 pm
Hi Everyone…I am not sure if i’m posting on the right site. I was diagnosed in Aug with breast cancer, had a partial masectomy in Sept. My tumor was estrogen positive and i’m still premenapausal. I am going to talk with my doctors about whether lupron injections would be a good option for me. I am so new to all of this. Are there any advice you can give me ?
November 4, 2007 at 11:25 am
Sherrie: I just had my first lupron injection on Oct. 19. I received a 3 month injection to reduce the size of a fibroid that I have. I have only been on it a little over two weeks. I have not experienced any side effects as of yet. I was very nervous about taking this medicine after reading reviews. But I think you just have to talk it over with your doctor and pray about it and come to the decision that is best for you. I want to have children and the way my fibroid is situated and the size will make that pretty difficult for me. I hope that helps.
November 7, 2007 at 1:18 pm
Hello,
I was diagnosed with adenomyosis the january 2006, the month of my 30th birthday and during a very bad miscarriage. Once that was over the said they wouldn’t bother me with it being the only cure to it would be hysterectomy unless it gave me problems. I have two boys and would like to try for one more. 6 months after I started going through the out of control nonstop bleeding between my period I was put on birth controls of all kinds. A few kinds of progestrine and lead into try a myomectomy to remove some of the adenomyosis. I got the surgery 8/27. Since then I had about 2 weeks without bleeding. My doctor wants me to try lupron for six months and then try and concieve right away. I am home and will have to quit my job because I can’t work under these conditions and calling out and leaving work because of the bleeding will get me fired. I say better to quit on good terms. I got my first shot October 19, It stopped the first couple of weeks and Saturday it started back in the worse way. I never had cramps with any of this but I do now. I am so scared because the adenomyosis gets worse when you bleed. If the Lupron won’t stop the bleeding I keep wondering will I even stop bleeding to even be able to make an attempt to make a baby. Is it possible that six months of the shot will eventually stop the bleeding?
November 12, 2007 at 12:19 pm
Hello,
I am currently debating on taking lupron for endo adhesions located on my bowel and uterus. The required treatment is six months. I have extreme reservations about this. I have researched and seem to think the nasal spray is easier to control if there are indeed side effects. I would like to add this note to the above bloggers: Christi, if you have endo, I am assuming you had six months treatment as opposed to 3 months, therefore it has been six months since a period? As for your MD, perhaps get a second opinion? I am wondering if anyone on this blog has tried addback therapy ( a minimal amount of estreogen) with their Lupron/synergel? I know with endo, this is a common practise to reduce side effects… Is it different with fibroid treatment? And if you have taken it, did you find it helpful?
November 22, 2007 at 2:27 am
I am 19 and have been diagnosed with severe endometriosis since i have been 15 and have gone through 4 surgeries for it. Where it would grow back in 1/3 the time as the very first one even being on birth control. When it grew back in 3 months they refused to do surgery on me and suggested my 3 options were pain management (being on narcotics all the time-but i chose acupuncture) the lupron or a hystaryctamy. (at 19) I have had really bad reactions with shots in the past and at first everything seemed normal until i started getting the feeling i was going to crawl out of my skin and everytime i got a hot flash i got so sick that i would almost pass out. my reactions were so severe that the company that makes lupron didn’t know if this was supposed to happen and to ask the dr. and the dr. said it was still working just because i got hotflashes. Well shouldn’t the company that makes the shot know the side affects? they reported it to the fda. I only took the shot for 3 months and i am still gaining weight. everyone says it will come off but each day it seems harder to believe especially when being a college student is hard enough as it is with my major. I still get hot flashes and am going on 2 months with out my period.
But this is what i recommend. There are 2 different types of acupuncturists. Ones trained from the old kingdom and the new kingdom (I know this sounds wierd) the old kingdom doesn’t really use needles because its more with getting in touch with the exact problem. where the new kingdom is the acupuncturist that just sticks you with a lot of needles because they just know the general problem.
i have had both and if you can find a guy that works with the old kingdom do it because this is what made me feel better b/c the whole time i was on the shot i felt like shit.
but does anyone know how to get all this excess wieght off when im even taking waterpills?
December 9, 2007 at 3:49 am
I have been most fortunate with my Lupron injections. So far, I have had 5 with number 6 due next week. My physician recently read up on the Exablate procedure. Seems to think I may be a candidate. On Friday, I contacted one company offering the procedure. The price quote of $8500.00 sounds obscene at first until you put it into perspective. No more Lupron (and now Progesterone), no more Personal Tropical Vacations (hot flashes) and no more hideous periods (extremely heavy and painful).
WIsh me luck geting my crazy insurance to pay for the procdure.
December 13, 2007 at 8:06 am
Hi,
My wife (age 30) is suffering from Ovarian cyst so her doctor did laproscopy on her. Its the third time its been done. This time doctor put her on the Lurpon depot for 6 months ie 2 shots with a gap of three months. Its now 8 months since she had her periods. She is very depressed and reacting very differently at times (not sure if its hot flashes). I am not sure its because of the periods not happening or what else. Could you please help me on this. Also is there a way she can get back her periods?
December 31, 2007 at 12:58 pm
Hello all,
I am sorry to read some of the side effects people have experienced on Lupron. Only after I had had my first shot for massive fibroids and bleeding for 6 months, I found this website and I became really worried of having had the shot without knowing the side effects. A week after my first shot, I had a period from hell. I thought I had seen it all, with clots, cramps and excessive bleeding, but this time I thought I would bleed to death. I literally locked myself in the bathroom for 2 days, even double protection (super plus tampons and super pads combined) only lasted 10 minutes. But after 5 days things cleared up and I haven’t been bleeding since. I had my third shot 3 weeks ago and I feel absolutely wonderful. No hot flashes, no night sweats, nothing at all. My aneamia has improved a lot, so I have lots more energy, but my fibroids haven’t shrunk unfortunately. Instead of a laparoscopic hysterectomy and I am now scheduled for an abdominal hysterectomy next week. Although the Lupron didn’t do exactly what I had hoped it would, I am very happy that my doctor gave me the shots. I am in a much better condition for surgery and I am looking forward to a new life without periods. I am 46 and have been suffering from heavy and painful periods due to fibroids for over 20 years. I tried all the other treatments over the years, but nothing helped. I hope my experience will convince other women to give it a try, because not all women experience the side effects. Good luck to you all!
January 6, 2008 at 5:20 pm
December 2007, is my first month of receiving the lupron shot and so far I’ve gain 8lbs. What can I do to control the weight gain.
January 6, 2008 at 5:26 pm
Tatianna, I received a 3 month injection of lupron back in October. I started working out just prior to my lupron injection and up until the day before my AM. I lost 10 lbs. I have gained some back b/c surgery has not allowed me exercise the way I was before AM and my eating habits haven’t been that good since AM. I would encourage you to map out a workout schedule…I am not sure if it was the exercise or if I was just blessed not to have significant symptoms but it is worth a try.
January 7, 2008 at 2:56 am
I would not reccomend this to my worst enemy!!!!!!!!I was scheduled to have 3 Lupron injections before hysto. About 2 weeks after the first shot I started getting headaches, nausea, legs cramping and then the 3 week period started. Well, I wouldn’t call it a period, I thought I was going to bleed to death. It has caused the clotting that I was already dealing with worse. They become larger and bleeding heavier. Needless to say, I cancelled the other 2 shots and now looking into ExAblate. My first shot was the first week of October and it is now Jan 2008 and things are no better. I would not reccomend this to my worst enemy.
January 7, 2008 at 10:08 am
Melanie, I am sorry to hear about your experience with lupron. What did your dr say about your symptoms? Has your period come back? Also, what is exablate? My dr says that my period should be back in feb. and being that I didn’t have a rought time of it with lupron I am hopeful that it will show up soon.
January 19, 2008 at 6:58 pm
Does anyone have a positive experience with lupron they would like to share? I am waiting on my period to return and am curious what is the average time frame. I took a one time 12 wk injection in October and my 12th week was last week. My dr says my period should return next month.
Anybody out there??
January 19, 2008 at 7:40 pm
After researching Lupron on the web, I was amazed at how much negative information is out there. As a researcher, you need to take all the information and balance it to make an analysis. Wow, I was shocked, so I’m so happy to find this site. I am 49 years old, have fibroids, and will have a hysterectomy in April. Ideally, I would like to have a lap. hysterectomy saving the cervix and ovaries. For the best chance of that, I’m going to start Lupron next week for 3 months. I’m more concerned about the Lupron than the hysterectomy. The posts on this site have given me a lot of helpful information. From what to expect prior, during, and post surgery. Thanks so much for doing this. I will keep you posted on my experience in an effort to help others. Again, thanks
January 19, 2008 at 8:44 pm
Claudia: Good luck with the Lupron and best wishes for a successful operation. I look forward to hearing your Lupron experience as I am currently debating taking it. Take care.
January 19, 2008 at 11:40 pm
Good luck Claudia. Are you taking 3 one month injections or are you taking one shot for three months. I received the three month injection in October. I had a relatively pleasant experience on lupron. I didn’t experience the heavy cycles or anything. I had light spotting the second month and nothing in November. It’s pretty hard to mind anything remotely positive about lupron. But I can honestly say that I didn’t experience anything that I read about.
January 19, 2008 at 11:41 pm
I meant find instead of mind. sorry
January 20, 2008 at 8:35 am
Thanks everyone for your support. This is the first site that has provided any “real” information. TK08 – I’m planning to do the 3 month injection, but have until next Thursday to decide. My initial thought was just do it in one injection, then the more I read, the more scared I got. So am entertaining going 1 month at a time. So I can quit if the side effects too bad. I would if people could share their experience on Lupron with me. Thanks so much.
January 20, 2008 at 8:36 am
I missed the word “appreciate” in my next to last sentence.
January 20, 2008 at 5:08 pm
I think the one month injection is a good idea. In hindsight I would have done it monthly; however, it is water under the bridge for me now!
Just make the most educated decision you can. I will keep you posted on my experiences as I wait on my cycle to return!
January 20, 2008 at 5:45 pm
I am 22 years old and had a myomectomy in april of 2006 removing 20 fibroids,one football sized and many other ranging from softballs to golfballs. I am still having problems with fibroids and right now I am back to having 15 fibroids. I am experiencing alot of pain and my doctor doesnt want to do another surgery, and neither do I. He said I am at the point where I should either do the lupron 1 month injections or have a hysterectomy. I am not ready to make the decision to never have children so I plan to start lupron this week. I have been getting mixed messages about lupron. And I am wondering if I am going to be getting rid of the pain but starting many new problems. I need some advice here. I am a nursing student so my time is precious. Losing sleep, memory loss, and all these other crazy side effects I hear about arent exactly things I look forward to dealing with while trying to do well in school. I have become a fibroids expert over the past couple of years…but I need advice. If anyone can explain their experience I would really appreciate it. Thanks so much
Laura
January 20, 2008 at 9:32 pm
Laura, I took lupron back in October. I had the 11.25 mg shot which is a 3 month injection that time releases in the body over a 12 week period. I received the shot in the hip at my doctor’s office. I have insurance but bc the medicine was so expensive I still spent over $200.00 out of pocket paying my 20%. I have not experienced memory loss, decreased libido, sleep deprivation or any other side effect mentioned with lupron. I suffered from migraines prior to taking lupron and quite honestly can’t say that I suffered any more migraines than usual. I have a high stress job and catch migraines fairly easily if I am not careful.
I had my period a couple of weeks prior to my lupron shot. I didn’t have another period until November and it was simply very light spotting. I didn’t have a period in December and have not had a period thus far in January. My 12th week ended last week. My dr said to expect a period in February and being that my experience was rather uneventful, I fully expect my cyle to return. I want to note that my cycle was regular prior to lupron so I wasn’t experiencing any irregularities.
I worked throughout my lupron treatment and I didn’t have any problems. I work 12 hour days sometimes and I had no problem staying in my routine. Now, I did have reservations prior to taking lupron and I labored over the decision. I cried about my situation and about the possiblities of hotflashes and vaginal dryness. Thank god I experienced neither.
Everyone’s experience with medicine is unique to that individual. I would like to think that the majority of women have just a good an experience as I had; however, I have nothing to back that up.
I advocate making an informed decision and one that is not based on the fear of the unknown b/c quite frankly none of knew before our AMs what was going to happen and the same is true of any medicine that we take.
Sorry for the monologue, just wanted to share my experience with lupron.
January 25, 2008 at 12:39 pm
Hello all, I had my first injection yesterday and no changes. I opted to have an injection each month. I’ll keep you posted.
January 25, 2008 at 11:32 pm
I have suffered from ovarian cysts for over 25 years. I have fibroids and endo. I just turned 40. I have had 4 surgeries for the cysts, have only one ovary and the endo was found during the last surgery. I am four months in to my Lupron injections. I took the first 2 months of single month injections and then I went for the 3 month in November. I’m sched for the 6th and final in Feb. My doct did’t prepare me for what to expect. But I read up on first and decided to do it anyway. The first 2 wks there is a major spike in hormones which usually results in your symtoms getting much worse. I knew I had to get through that first 2 wks and everything should level off. I figured if after 1 month, I could handle it, I would get an other. My migranes started full force, but I am a migrane sufferer. I just increased my daily migrane meds and that helped. I had the 2nd injection and was nauseus as hell the following day. The next month or so the hot flashes increased. Mostly in the mornings and at night and through the night. The major problems that I am having are severe leg cramps, hot flashes waking me up all night, very emotional and suddenly, and the most alarming to me, depression!!! I am for the most part a rather upbeat, easygoing, social gal! I am finding myself not wanting to go out of the house at all!, crying uncontrollably, not wanting to talk to my friends. In a million years I never thought that this would be a side effect that would ever effect me. My thoughts are scattered and I feel like I am crawling out of my skin!! Listen…I have been reading all these other comments and good for those who have had no problems!! Hot Flashes are nothing to be concerned about! I just hope that all of this goes away when I am done. I have been pain free!!! I can say that!! And I am not looking forward to my period again! I wish everyone luck out there..but with this and with anything else…you must do your own research and know what to expect. You can’t always rely on your doctor to tell you everything. Half of them are on the drug company payroll anyway! Good Luck to you all!
January 26, 2008 at 9:38 pm
when will lupron/synarel leave the body?
Hi I was wondering how long it takes for this medication to stop working after stopping it ? does anyone have an idea?
I was on synarel for 2 months with very minimum side effects except for depression. I stopped it 2 months ago but the actual side effects : hotflashes , chills, a lot of bone ache started actually after stopping it for me. I have not had a cycle yet and I am totally miserable with insomnia and muscle bone pain if I dont take Birth control pills; so I suspect my hormones are still suppressed even though synarel is officially out of my body.
it feels helples..:(
January 27, 2008 at 5:04 pm
I had my 1st shot up lupron this monday and so far no side effects. I am doing the lupron 3.75 depot that’s given once a month. I am a little sore, but nothing unbearable. I have also chosen to modify my diet, I am basically following the vegan lifestyle but a little less strict. I cut out any meat and all diary, by of their estrogen contents. So far I have been feeling pretty great. But since I am a nursing student I know that its going to take more than a week for the side effects to start to appear. So I will be sure to share how Im feeling after another week or 2.
January 27, 2008 at 6:55 pm
Hi I am Melanie and i have been on zoladex for 4 months now. I had my last shot 2 weeks ago. I have an abdominal myomectomy scheduled for the 13th of february for a fibroid that was the size of a 22 week pregnancy. I can’t really tell if it has shrunk or not but my periods have stoppped.
I have had a lot pf side affects and am starting to feel like i can’t cope. I have hot flushes, night sweats i feel depressed and i have mood swings. The side hot flushes make me unable to sleep which means i am not performing as well at work even though i enjoy my job some days i feel like i dont want to go into work becuase i am too tired.
My husband doesn’t really understand my mood swings and he has changed towards me because i have become really emotional and cry a lot and feel like no one cares about me. its horrible its like permanent pms.
Please does anyone have any advice for me. I went to my doctor and he said i just have to ride it through but it’s so hard……
January 28, 2008 at 2:19 pm
Melanie, hang in there. I can’t say that I can relate to how you are feeling b/c I didn’t have any negative side effects with the lupron. I am not sure what your religious affiliation is, but I would encourage you to pray about your situation and try to ease a lot of your stress. Sometimes it is hard for men to conceive what our bodies go thru. Pray for your husband to gain understanding and for your body to have the strength to deal with the pressure it is under. Stay in touch with your dr and see if there is anything he can to ease the symptoms. I have read about some women receiving add-back therapy b/c their symptoms were so extreme. Ask your dr about all reasonable options to ease your suffering. Hope that helps.
February 1, 2008 at 11:08 am
hi guys. I am a 16 year old girl and i just got my first lupron shot yesterday afternoon. I am on lupron because i get very painful small follical cysts every month. My gyn. has put me on two different birth contol pills and they dont seem to be working. So now i am trying lupron. I was wondering how long after the shot do people typically start having symptoms. I am having a monthly shot with 3.75mg. Is lupron gauranteed to stop me from having cysts? and feeling pain. My cysts each month are very small. Last July i had my left ovary taken out because it had a dermoid cyst the size of a cantaloupe. Anyways i only have my right ovary left and that is the ovary that i get all my cysts on.
Anyways, thanks for the help.
February 2, 2008 at 3:27 pm
Hi everyone – My last post was on Jan 25th, one day after my first Lupron injection. Now it Day 9 and I’m still doing great. I have been a bit irritable, but I’m not sure if it the Lupron or just me. I’m not going to jump to blaming the Lupron at this point. Stay tuned.
February 3, 2008 at 2:54 pm
hey guys.. I m onlly 16 and i was wondering if a few of you would be willing to answer my post.[ no one has answered ] thank you.
I posted it on Febuary 1st 2008
February 5, 2008 at 3:25 am
Hey Kelsey, try asking your question on some other threads, (maybe just ask them to look over here at your question)– not too many women usually check in here…(although January was a huge exception) — so many may not see your question unless they get all the posts emailed to them… but I also have to say, I don’t think I’ve seen ovarian follicles brought up here…. although my sister and I also had dermoid cysts on our ovaries, in my case when I was 19 and I lost almost all of my L ovary, and my sister had surgery for hers in her 30’s. Mine was only the size of a base ball…not a cantaloupe – wow! But mine was was a long time ago…so I didn’t hear about lupron until I started reading this website and never had particularly painful periods. So try reading the old posts and keep looking on other webpages, good luck and hang in there!
February 12, 2008 at 8:38 pm
Hi All, Just to refresh everyone’s memory. When I started researching Lupron, I read a lot of scary things. What I didn’t find was specific information on what others experienced. So in an effort to help others, I decided I would post my “Lupron experience” for good or bad. Fortunately, it’s been pretty easy. My last post was Feb 2, 9 days post Lupron injection. No problem from day 1-12. On day 12, I had two hot flashes. I and they were both very manageable. I didn’t break a sweat, so I think that categorizes them as mild. I’ve had 1 or 2 since then. On day 14, I started what appears to be my period. Same flow so far. I’m now at day 19 and doing great. I plan to go for my second injections on Feb 22nd. I’ll keep you posted.
February 16, 2008 at 12:26 am
Claudia,
Glad to hear that your lupron injections are going well. I hope that this thread picks up more to share lupron experiences. I have finished my lupron treatment and am waiting on my period to come back.
I took a 3 month injection in October and had my surgery in December. Dr. says my period should come back this month or next.
I had an uneventful time with lupron and am thankful for it. Good luck with the rest of your treatment and please continue to share your story.
February 18, 2008 at 8:32 pm
I am scheduled for my first Lupron injections on Thursday Feb. 21,
2008. I wish I could explain first hand what is going to take place I can only explain to you what I have read. I also have a lot of fibroid tumors and a enlarged ovary.
Losing sleep, memory loss, and all these other crazy side effects I hear about arent exactly true.I know that its going to take more than a week for the side effects to start to appear. So I will be sure to share how Im feeling after another week or two.
Tell your doctor right away if you notice any signs of depression.
February 23, 2008 at 9:25 am
Hi Barbara, how many injections are you scheduled for? I just went back to see my RE and he was a little surprised that I have not started my period yet. Told me to wait until next month and if I haven’t started then to come back and see him. I was very regular prior to the surgery so hopefully my period will come back any day now…and hopefully before and not during my vacation!
Keep us posted on your lupron experience…I had a rather uneventful treatment and am thankful for it considering the stories I have heard!
March 5, 2008 at 12:38 pm
Hello,
I am so glad I found this website – I had endo and had laproscopy in 2004 to remove 50% of endo then began having terrible lower pelvic pain in March of 07 – placed on BC then in began bleeding from June to Aug with pain becoming horrific in July (receiving multiple pain meds of which none worked) then placed on Lupron in Aug – pain subsided first 10days then pain was more severe than ever – placed on prempro which made me crazy and stopped taking prempro within one month-
Took shots again in Sept – Oct -(Nov received 3 mo shot) – All the while very,very tired – decreased sex drive – night sweats did not occur until Dec and result in waking up 4-7 times a night – if I had it to all over again I would not have opted for this tx – also it has affected my job tremendously and have to use nearly all of my time off acrued in the past 3 years for this.
March 6, 2008 at 11:09 am
Hi,
Diagnosed with 2 fibroids, 9.5 and 5.5 cm. Have been bleeding anywhere from 13-18 days with first 3 days being very, very heavy! Scheduled for hys…gyn put me on Lupron to try and build hemoglobin as anemic and shrink fibroids. Started period Feb 5 day of first lupron shot and have not stopped bleeding since. Had 2nd shot yesterday and GP says see what happens with this shot. I ahvenoticed this morning the bleeding has really picked up. Any thoughts?
April 2, 2008 at 9:25 pm
Tammy, not sure if you are still checking these posts, but I would check with my RE. I didn’t experience any kind of increased bleeding while on lupron. I took the 3 month shot in October and just started my period in March. Lupron, for me, was not a problem and my treatment went just as my RE stated. I feel pretty blessed to have had a rather good experience with lupron.
April 6, 2008 at 9:17 pm
I am a 49yr old female and I have been given Lupron Depot a few week ago for fibroids and thickening of the uterus I was also having a problem with long and heavy periods now I have hot flashes worse than I had before, bone burning infact I can’t get out of bed without pain medication (it’s in my heels) nothing has changed only new problems like acme “at 49” I don’t want my second shot I’ll take my chances with a hysterectomy my Doctor keeps telling me all this will pass. My feet get so swollen I can’t walk very far! I’ve lost 5 lbs due to no interest in food or eating. Is anyone else having the same problems my Doctors are at the veteran’s hospital and have always been good but this is a drug someone needs to pull off the shelves! What do you think?
April 6, 2008 at 10:06 pm
Diana – I think everyone’s experience with lupron is unique to that particular individual. I did not have ONE problem with lupron and I know that from reading these posts I am extremely blessed. I didn’t experience hot flashes, decreased libido, etc. My experience with lupron went just as my RE stated.
I certainly think that taking lupron is a heavy decision; however, it was the best decision for me. It shrunk my fibroid and improved my recovery after my AM.
I am sorry to hear that you are having a rough time of it with lupron!
April 7, 2008 at 7:37 pm
I will be getting a Lupron shot in the next couple of days. My surgeon hopes that it will help shrink my fibroids before the AM that I have scheduled for May 27th. I am terrified about the possible side effects, but I love and trust my doctor. I promise that I will post regarding side effects whether or not they occur.
April 7, 2008 at 10:26 pm
Eve — Good luck with your shot! Believe it or not not everybody has horrible side effects.
April 10, 2008 at 12:45 am
Thanks for the good wishes. I got my Lupron injection yesterday afternoon. I was very nervous, but I received the shot in my hip and there was virtually no pain. The girls at my surgeon’s office were very reassuring; they said that the vast majority of their patients experienced no side effects, and that the few that did only complained of headaches. This relieved a lot of my anxiety, and I remain hopeful. Of course it’s only been one day, but I have not noticed anything so far. I was told that if they were to occur, symptoms usually develop after two weeks. I’ll report back then or if I notice any side effects, whichever comes first. BTW, this was a 3-month shot.
Thanks again for the reassurance, tk08! I can’t really get too much of that right now.
April 10, 2008 at 6:53 am
Hi Everyone,
It’s Melanie, I posted on January 27 to talk about how i was feeling after having 4 zoladex injections. I just thought i’d let you know that i had my op on February the 13th and it went really well with the surgeon removing 1 large fibroid (weighed 2lbs) and 2 small ones. Anyway i just want to say the effects of the zoladex have almost completely worn off and i’m feeling a lot better within myself and more like myself. I am still recovering from my op and having to work from home cos travelling to work in London on the tube didn’t do me any favours after trying to go back to work after 6 weeks i ended up aggravating my wound and couldn’t hardly walkafter a few days and had to see my doctors. But just wanted to say to those who are still having lupron or zoldaex injections and are having bad experiences. Hang in there it does get better and you will feel so much better within yourself once the fibroids have gone
. My hubby and i are still working through things as the change in my personality really affected him but through prayer we’ll get through.
April 12, 2008 at 6:36 pm
Eve – I had the three month injection too. I took the shot in late October and my period came back in late March. I did experience very light (pinkish tinge) bleeding in November and it was only a day so I don’t really count that as a period.
Please keep us posted on your treatment experiences.
April 12, 2008 at 6:38 pm
P.S. –Melanie, congrats on your surgery and I wish and pray for continued recovery. Did your period stop on the zoladex?? I ask b/c I am unfamiliar with this medicine. Also, IYDMMA, do you already have children or are you and your DH trying to conceive?
April 15, 2008 at 7:14 am
I have finished my 6 Lupron shots (for suspected endo – dr. never really confirmed) last month and have experienced weight gain and bloating… nothing fits right and even with excercise I cant lose the weight. Biggest issue is accumlation of “belly fat” around my midde , you know that horrible hang over your waist band fat… blah. Anyone else have this issue?
April 16, 2008 at 4:01 am
Hi all,
Just wanted to post a bit of info relating to Lupron side-effects.
I had a 1 month shot on 3/18, and had one rare response:
Note: Developed severe right earache 1 week post, lasted for 4 days. Decongestant and heat helped. Painful skin on scalp and headache accompanied.
Dr said indeed a rare but documented side effect!
And the balance of ’stuff’ for comparative purposes:
‘Twinges’ in left ovaries over 2 days one week post. Forgetfulness, difficulty following through on thoughts or plans. Mild back pain periodically. ‘Old blood’ show 15 days post and 5-7 days early for ‘normal’ monthly cycle; frank blood by day 2 through day 6. Sugar and salt cravings days 17-20. Weight loss stalled, reversed some; extremely erratic weights +-5 lbs in a day! Insomnia/irregular sleep pattern severely aggravated by 3 weeks. Strong twinges in right ovary 4/11/08 PM; ‘period’ still minor frank to trace blood show through 4/14/08. Bladder control extremely weak by 3 weeks.
Changes: 13 days post-shot the urine control was back to being shot- little to no warning, no ability to stop it, frequent trips to restroom. I THINK this means the fibroid is shrinking!
The last 2 days it seems like my concentration and memory is getting a bit better- at about 4 weeks post shot.
Good Luck to everybody
S
April 16, 2008 at 4:16 am
Hi tk08, zoladex is similar to lupron, i think, that’s what they use in the UK, my periods did stop after my 2nd zoladex injection and returned in march after taking my last injection on the 17th january. Thank you for your prayers too.
Mel x
April 16, 2008 at 10:17 pm
Hi tk08 et all… it has been one week and a day since my Lurpon shot and so far I feel fine. My regular cycle was due about two days ago and did not come. I assume that this is the shot as I am like clockwork. I had light cramping that lasted for about three days (nothing out of the ordinary) but that has stopped. Nothing else to report except that my boobs are BIG. I love it, but I know that this is probably just due to the temporary increase in estrogen and I will be super sad if they shrink up to smaller than before. We’ll see! I am also experiencing the rapid weight gain/loss that someone else mentioned– a few pounds up or down in a day. I average 125 so that is pretty significant. It’s not bothering me because I have been horribly bloated for over a year as the fibroids are filling my bowel cavity… so in that area, I’m no more miserable than usual.
I’ll continue to keep you all posted!
Best,
Eve
April 17, 2008 at 5:22 pm
Update on that last post: I did start my cycle, it was just a few days late. So far seems like a normal period.
April 19, 2008 at 9:00 am
Hi! I am 48 and had a single Lupron shot on Apr 10/08. I was already day 3 of my 14 day or so pre period PMS. That means my boobs get sore and I begin to bloat. Since the Lupron shot I have gaave 10 lbs of water, all in my breasts! I have Never had so much pain, not even when pregnant with my 3 kids. I have an excellent support bra and when I took it off 2 nights ago, I could not raise my arms above my head . . . the breast pain and stinging is that severe. I am taking 50 mg of B6 3xday 1000/500 mg Cal/Mag, drinking soy milk, eating edamame beans, eating 35 gms of fiber/day and walking a min. of 10,000 steps. This a.m. I see blood. I am scheduled for an ablation and internal cyst removal May 22. I thought the Lupron would stop my period from coming, and it doesn’t appear so. My Ob/Gyn lives 5.5 hours from me. I am going to contact her Monday a.m. Any advice from anyone about the breast pain would be great. I am big busted to begin with, but now it looks as if I am nursing twins! I cannot touch my breasts or even brush them with my arms, without pain. Help! Moira
April 20, 2008 at 9:02 am
Melanie – have you had your second cycle since coming of meds?? I ask b/c I was supposed to start my cycle this past Wed and no show. Preg test negative. I was wondering if the lupron was the culprit. I was really hoping that my periods were going to get back to normal…however, on the other hand….I am keeping my fingers crossed for a BFP.
Moira – I had a very easy go of it with lupron so I can’t help you there. Good luck with getting some relief though it must be agonizing!
Motherof3 – inner tube does stink!! I didn’t get it until after my AM. I am still trying work it off!
April 22, 2008 at 2:43 am
Moira, I really don’t have any experience with lupron…but the question that comes to mind is if all the soy you are taking may be contributing to your problem…. ?
April 23, 2008 at 6:15 am
Is it possible to lose the weight you gained from the depot lupron?
April 23, 2008 at 11:39 pm
Hello all;
Just filling you in. It is now two weeks and a day since my 3-month Lupron shot. My period started three days late and now I am still bleeding… it’s been about eight days and I never go for more than five. I am not crampy and the bleeding is not heavy, so it’s not horrible… My skin is definitely showing some signs of breakout, but my friend works for Proactiv and she gave me some samples and so far it’s helping (that is not a plug, just a lucky coincidence for me!). Other than that, I cry at the drop of a hat; I’m feeling pretty stressed and anxious. Some of that is the Lupron and some of it is real stress (my AM will be somewhat complicated and I’m worried about transfusion or hysterectomy). None of this is awful– so far, so good! I had headaches for about a week but not for the last couple of days. I’ll post another update soon!
Moira– please be careful with the soy!! I do think that it could be problematic, and if anything it’s working against the Lupron and not necessarily helping with symptoms. Do further research before self-treating.
Best,
Eve
April 27, 2008 at 2:42 pm
Yet another update: It’s been just under 3 weeks since my Lupron injection. I’ve lost 5lbs in the last week, and my abdominal pressure seems to have lessened somewhat. I realize now that I was kind of crazy during those first two weeks, because I have evened out emotionally and I’m feeling MUCH better regarding my mindset. Other than that, I have very mild and infrequent headaches and minor hot flashes– they are frequent at night so I keep the fan on, and they will come on during the day if I drink a hot beverage. I don’t mind them; it’s like getting into the car on a sunny day when it is just a little bit too warm in there and you feel like you are in the womb. I sort of sink into them and let the moment wash over me. Still spotting daily, but it’s VERY minor.
May 4, 2008 at 4:20 pm
Just reporting in… I wanted to let you all know that aside from continued hot flashes, the Lupron ride has been no problem at all. I finally stopped spotting several days ago (yay!), so the flashes are my one and only remaining symptom. Now that the crazy hormones of the first two weeks has worn off, I feel super mellow and even-keel. I’m looking forward to my pre-op and finding out whether the Lupron has been effective in shrinking these bad boys. Even if there has only been minimal shrinkage, I would say that this has been well worth it. Three cheers for the bell curve!
Eve
May 4, 2008 at 8:18 pm
Thank you all for your posts. I received a 3 month Lupron shot 12 days ago, and I was worried because I have almost experienced a surge in some of my symptoms. Then I started reading some really scary things about this medication, and I got very scared. I’m glad I found this site, which is very balanced.
Although i’m still bleeding every day, it is nothing like the heavy (and I mean heay) bleeding I had been having for the previous 3 months. I have had headaches, but I suffer from migraines. My appetite goes from nothing to strong cravings.
I am emotional, and I am very tired-but I think this also has to do with my anemia and heavy blood flow. I had to have a 3 pint transfusion, and am now taking super iron pills… I will be having surgery June 5. I have massive fibroid tumors and cysts…
I will continue to keep you posted on how things are going with this treatment.
May 5, 2008 at 1:39 pm
Hello All, I’ve been away for a while but wanted to give everyone a recap and an update.
I had large fibroids and planned to have a hysterectomy. One surgeon said I would have to go an Lupron and even then they would only consider an open approuch (abdominal hysterctomy) Hum!!! Didn’t really like that idea.
I consulted with another OB Gyn surgeon, who is noted for being progressive. So the plan was to go on Lupron for 3 months and then attempt to have the least invasive hysterectomy possible. She wouldn’t be able to tell the exact extent until she was in there and got a good look.
I started Lupron in January and was very concerned about all the side effects and horror stories. Because of that , I opted for the monthly injections, so I could discontinue at any time. The bottom lines was I didn’t have ANY problems with the Lupron and my fibroids did shrink significantly.
I was able to have a supracervical hysterectomy on April 25th. Nine days ago. I work at home so was able to work for a couple hours everyday since then. I’m not joking or exagerating. I know this isn’t typically, but because of the way the hysterectomy was done, the recovery period is down to 2-3 weeks, instead of 6-8 weeks.
For those of you who are interested in information about the difference with a supracervical hysterectomy, here’s some background.
Abdominal – They make an incision across the abdomen cutting the abdominal muscles cut all the connections to the uterus and remove them through the abdominal incision.
Vaginal or laproscopic assisted vaginal – With these, they go through the vagina make the cuts and pull everything out through the vagina. No cutting of the major abdominal mucsles.
With the supracervical (above cervix), three small incisions (portals) are made in the left side, right side, and belly botton. These incisions do not cut the major abdominal muscles. The surgeon places a light, a cutting tool, and a grasping tool through the portals. The surgeon then cuts across the uterus just above the cervix. (The cervix is the bottom of the uterus and is where the uterus is connected to the pelvic wall. As we age and have children, the pelvic wall mucsles can weaken. When the pelvic wall muscles are cut they become even more weak. Because the cervix is left and the pelvic wall connections are left intact, you have less pain, better pelvic support, and a reduced recovery. Girls, this is not your mother’s hysterctomy. This is GREAT. Like I said, other than discomfort from the bruising around the portals, I have NO pain. I haven’t taken anything for pain since the night of my surgery.
OK enough from me on that. I just wanted to give eveyone an update and let you know how much I appreciate all the information you provided as I was making my way through these decisions. I hope sharing my experience, both with Lupron and the supracervical approuch, will help others as they move through this process.
Take care, Claudia
May 5, 2008 at 9:52 pm
Danny;
Best of luck with your treatment… the first two weeks for me were like being on crazy pills. Seriously, I cried (hard!) every day and had lots of headaches. Hopefully, you will have a similar experience to mine; I was so happy to stop bleeding and I feel so normal now emotionally. Just down to hot flashes and some mild, infrequent headaches (I get migraines once in awhile too).
I’ll be keeping my fingers crossed for you that you will remain safely under the bell curve as I have.
Best,
Eve
May 5, 2008 at 9:58 pm
Just to clarify on that last post, when I said that I get migraines once in awhile, I meant in my normal life… NOT because of the Lupron (that would be awful). Lupron headaches have been normal and manageable with non-aspirin pain reliever.
May 13, 2008 at 8:32 am
I had my Lupron shot on April 10th, and began my period on the 19th. It last over 8 days, heavy bleeding, plus 6 days of red spotting – 2 weeks in total. I am having an ablation done May 22nd and a cyst remove from my vaginal wall. I have packed on 10-15 lbs, all around my waist. My eating habits haven’t changed, and in fact I have been taking a 10,000 step daily challenge for the past 3 weeks. I am exhausted, yet my sleep is short-lived and deep. I fell asleep around 11:00 p.m. and wide awake at 4:30 a.m., Haven’t slept since. Even when I nap on the weekends I am constantly tired despite taking all sorts of vitamins (including Iron). Does Lupron affect Thyroid levels? Is quick weight gain a symptom? What about my constant tiredness . . . is that a symptom?
Thanks!
Moira
May 14, 2008 at 8:33 pm
Moira – I didn’t notice a significant weight gain. However, I was doing a “biggest loser” contest at work so maybe my activity countered any weight gain. You should contact your dr or rn…I didn’t experience ANY side effects with lupron. I started it right after my cycle ended, had some light bleeding the next and then nothing for about 3 months. I had the three month injection in October and period came back in late March. Hope that your symptoms wear off and you can get some rest!
June 30, 2008 at 1:23 am
3 days after first gnrh shot, my period arrived (CD 20?).i have done my laparoscopy 6/16 (CD 10) then shot 6/23.brown spotting with cramp so hurt then period next day.my gyno talk to take calcium after shot cause of osteoporosis side effect.and yes,my bone is hurt.i dunno bout early period after shot.i call my er then he said, its okey.and shot must go on schedule.and i suffer from migraine too.but,till now,thank god there’s nothing to woorry.
July 2, 2008 at 2:03 am
I’m 25, in December I had a surgery to remove cervical cancer and endometriosis. After 1 week my OB/gyn put me on Lupron, 6 shots, 1 shot a month. I hated it. It made me feel like I was going through menopause at 25. I had hot flashes so bad I could feel when one was coming on and all I could do was sit there with my eyes closed and sweat while it passed. For some reason they always made me sick.
I gained a lot of weight too. I was finally down to 120 after having my son and during having those shots my top weight was 198. Its been a few months after having my 2nd to last one. I didnt get to finish, my insurance only covered 4 and those shots cost around 500 each in tennessee so there was no way I could pay for them myself. Ive been bleeding pretty heavy for 3 weeks now. Ill stop bleeding not wear a pad for 2 days then all of a sudden a big gush of blood will come out. Ive been trying to find out if this is normal. My doctor seems to think so but Ive wanted to hear others?
July 2, 2008 at 4:25 pm
Hi everyone! This blog has been really helpful!
I know that most (okay, pretty much all) on this thread have been diagnosed with fibroids or endo. My problem is that I was given a Lupron Depot shot by mistake. I have neither…and I’ve been through about 10 ultrasounds in the last 6 months….
DH and I have been going through infertility treatment. We were set to do IUI and needed a HCG shot to prepare. The nurse mixed it up and gave me a Lupron shot instead.
I have had hot flashes, night sweats and headaches that are just crazy. I was told that I should get a very heavy period 3 weeks after the shot and then it will probably take another 6 weeks to get another period. After that period, we can start TTC again.
I spotted for about a week after the initial shot. Then, I got my period 2 weeks to the day after the shot and have now had a heavy period for 9 days with no end in sight. I’m feeling VERY tired all the time. I’m wondering if I could be anemic?
Also, has anyone just had 1 month worth of Lupron? How long did it take to get back to normal after it?
I really appreciate this blog. I’ve been reading so many scary things about Lupron that I’m terrified my doctor’s office really, really, really screwed things up for us!!! It’s nice to hear from people that went through it and came out okay on the other side….
July 8, 2008 at 9:09 pm
So glad I stumbled on to this site. I had the 3 month lupron depot shot 2 weeks ago for large fibroids. I feel my abdomen has gotten more huge and I have more pelvic pressure. Has anyone experienced this? Does the initial surge of estrogen cause fibroid growth in the beginning?
July 8, 2008 at 10:05 pm
SES,
That is a terrible mistake! I had lupron (twice for 6 months) I’m not sure if mine grew at the beginning but the lupron didn’t reduce them much. The symptoms are not fun but aren’t the worst either.
Goodluck with TTC!
salsera
August 30, 2008 at 8:56 am
Thanks for such an informative post about cancer.I need this info because my friends mother is suffering from Cervical Cancer, information mention in this article will greatly help me in offering her some advice
thank you
September 8, 2008 at 8:05 pm
Has anyone gotten pregnant while getting Lupron injections are after recieving them?
Please try either Maca or Vitrex, they help shrink fibroids and I have read articles that regular exercise helps because it helps regulate hormones. Another thing to try is a do a Liver detox.
Kim
September 29, 2008 at 8:14 pm
I just got my second Lupron shot about a week ago. I had my first hot flash while I was at the beauty parlor. I thought I was going to pass out. I was sweating like crazy I became light headed and my vision became blurry, I really thought I was going to faint, does anyone have any suggestions about how to handle them? It probably only lasted a minute or two but it felt like and hour. Has anyone seen their blood pressure rise from the Lupron?
October 25, 2008 at 5:38 pm
I got my first 1-month shot on Oct. 2. My period started 10 days later. The period was extremely heavy, and 6 days into the period I noticed that I was getting out of breath and my heart was racing after doing the simplest of tasks like unloading the dishwasher and just walking through the house. I went to the gyn who tested my blood and found that my hemoglobin was down to 4.8! I was told that it should be at least 12. I was immediately admitted into the hospital and had to have transfusion of 6 pints of blood, and the nurses told me they were surprised that I was even still conscious with a hemoglobin level that low. I was released from the hospital once my hemglobin got back up to 11, but I am still having the bleeding and it is still pretty heavy, despite the add-back hormones that the doctor gave me.
I have never had trouble with low hemoglobin before, and am very alarmed with what has happened. The doctor DID NOT tell me that heavy bleeding could be a side effect, nor did I see it listed in any Lupron information or on their website. This has been a very scary experience, and I wonder if I am ever going to stop bleeding, and I’m afraid that I may have to get another blood transfusion if this bleeding doesn’t stop!
It was comforting to find others on this blog who have also had heavy bleeding, although possibly not as profuse as mine. At least I know I am not a freak.
October 28, 2008 at 5:57 pm
I took my first Lupron (1 month) shot a week ago and have had a headache once or twice (this is not unusual with the weather change though) but no other side effects. Did it take a couple of weeks for the side effects to start? I have read so many horror stories and am not experiencing them.
October 29, 2008 at 2:48 pm
I guess I spoke too soon, so begin the hot flashes.
October 30, 2008 at 10:16 am
Mary, a few days after I got my first lupron shot I also had a heavy period, shortly after my second shot I had my first and only(knock on wood) hot flash. I also had some bleeding after my second shot but it was light. I just got my third shot and I finally have no bleeding at all. I am finally able to donate blood to myself for my upcoming abdominal myomectomy. Although I have had only one really bad hot flash I do find that I sweat alot more and I am constantly running a fan or air conditioner.
November 25, 2008 at 4:24 am
I have been on lupron injections for over a month now due to becoming a gestational surrogate mother. The only problems that I have had are the headaches. They seem to come and go. I have to give myself shots every night.
November 26, 2008 at 12:51 am
I was to receive a 6 months treatment of Lupron. I’ve had already 5 injections, and this week I’m supposed to have the last one. I’m having second thoughts about getting it. I know that is the last one and all that but you don’t know how miserable I feel. I’m young but I cannot do anything while on treatment, I have no energy, not even for driving! I’ve had the ad back therapy and it has helped me to sleep better and with the hot flashes, but still have no energy! Do you have any information on what could be the results if I decide not to get the last shot? This has been horrible for me, I’m not willing to have to live with this for one more month. Please reply to me! Thanx
December 3, 2008 at 12:46 pm
I received my first Lupron injection (3-month) on October 30th, the second day of my period. My period was not as awful as usual (no huge clotting) but still heavy. I have bled and/or spotted since with the exception of four days November 27th through November 30th. December 1st I started spotting again. I’m waiting to see if this turns into a full-blown period. I’m disappointed (depressed, actually) since I was hoping that my periods would stop altogether. Maybe they will. I am being treated for fibroids and anemia. Since I’m so close to menopause (I hope – I’m 52), my physician feels we can avoid a hysterectomy by using Lupron until natural menopause kicks in. I have experienced hot flashes – mostly during the night. I feel tired too, but I’m not willing to blame it on the Lupron since I usually stay up too late most weekninghts. Other than that, no other noticeable side effects. This website has been helpful – most of the other Internet information I’ve found has been too hysterical and one-sided to be of much value to me. Thank you.
December 4, 2008 at 11:59 am
Hi Kim, I’m 53 and had hysteroscopic endometrial ablation w/ a D& C 2 years ago, and my bleeding completely stopped! I’m no longer anemic and I feel great with the exception of backpain which may or may not be fibroid related. I also still have a belly I don’t like – so I’m going to get these darned things out. But, I’m thrilled I had the procedure and would recommend it highly. You don’t know when menopause will kick in. I would suggest finding a doc who can do a hystereorscopic EA – as not all can do them… I’m partial to them based on what my doc said and the bloating I’ve seen other women complain about on this site. Look for more info on EAs on this site – there are several threads. It’s easy for the doc to tell you to wait – he/she isn’t living with the bleeding and the anemia or the side effects of lupron. Best to you!
December 16, 2008 at 1:27 pm
I’ve read through a lot of the posts and had similar experiances with the injections. I had the surgery the end of June and had another large cyst grow on my right ovary shortly after. (Kind of wondering if the doctor missed it). I am 30 years old and do not have any knowledge that this runs in my family.
I started two months ago with the injectons a lot of cramping and normal periords. The heat flashes are getting worse and I’ve had some issues with memory loss and I seem to be loosing a lot of hair every time I wash it. Keeping my fingers crossed that the heat flashes, memory loss and hair loss are only temporary. My peroid is over 4 weeks late so it may have stopped. The cramping is all but gone.
December 17, 2008 at 2:10 am
So happy to have found a site like this!! I got my first Lupron (3 month) shot on the 11th. I don’t have anemia or endo that i know of. My GYN is doing this as a trial, as i have had severe abdominal pain for the last 8 years. (I am almost 25 y/o) Had a mass taken off my right ovary in ‘03 one more surgery in ‘05 and constant issues since. We can’t seem to figure out exactly what’s causing the pain at this point. He’s hoping that if we can shut everything down the pain will stop. Here’s hoping…
I turned down the Lupron shot in ‘05 because of the side effects, but am at the end of my rope now with the pain. So far for side affects i have experienced a few headaches – which is uncommon for me normally, and just some tiredness, but nothing too bad.
How long does is usually take for side effects to really start? I’m a little uneasy about this whole process and don’t really know what to expect.
January 7, 2009 at 4:48 pm
I’ve been on Lupron for about 2 months now, and haven’t really had bad s/e. The only ones I have experienced started about a month after the 1st injection (I am on it for 9 months, 1x/3 months).
I had mood swings, but it was more like just a really short temper fuse and the problem of crying at everything! I also got horrible headaches for about 2 weeks, but coffee really helped. The other thing I’ve noticed is hair loss! Nothing significant, but I am cleaning out my hairbrush every few days and shedding everywhere! My hair texture has also changed – it’s oilier and my scalp is different.
The headaches have lessened as time went on, but I imagine I’ll cycle back through them after my next injection. Honestly, I was TERRIFIED after reading about horrible experiences of other women. I expected to break out like crazy, gain 30 lbs, and have horrid hot flashes, etc. I put on about 3 lbs, but that could have just been Thanksgiving and Christmas! It hasn’t been that bad for me, overall, and I just hope that in 9 months my endo is lessened and we won’t have trouble TTC.
January 7, 2009 at 4:50 pm
Follow-up to previous post – I never experienced any bleeding.
January 9, 2009 at 10:59 am
I started taking the Lupron shots in May 08 for the treament of fibriod. I had taken 4 shots and then I had a hysterectomy. The doctor found then that I had endometriosis. He suggested that I take 2 more of the Lupron shots after sugery to treat the endometriosis. I did that and I took the last shot in Nov. Since then I have had panic attack and LOTS of anxiety everyday. When I have the anxiety then my blood sugar will also drop. The doctor has put in on Buspirone for the anxiety. Has anyone else had the issue of anxiety after taking the Luprone shots? My last shot was in Nov and as time goes by the Luprone shot should be getting out of my system but the anxiety is still the same.
January 11, 2009 at 9:52 pm
Had a 3 month Lupron injection in Oct. Have not had a period since November (Enjoying that!!). Scheduled for myomectomy this month (Not excited about that!!). I was terrified of Lupron, but didn’t have many options left. So far the only symptoms I’ve had are hot flashes. They started about 6 wks after my injection. The length and intensity have increased from a fleeting second to about 3 minutes of heat and sweat. Unfortunately no shrinkage of my fibroids. Thus far my experience with Lupron has been positive. This is a great, helpful site. Keep blogging!!
January 17, 2009 at 5:55 pm
I was diagnosed with Genetic Hemochromatosis in 2006 (Iron overload) so I had to have blood removed to lower the iron levels. Than the fibroids took over causing ten day periods with heavy clots etc. Became anemic went to see GYN she suggested Lupron and a hysterectomy when my iron levels went up. One dose of Lupron lasted six months ( it was a three month dose). The result no periods (thanks to Lupron) but lots of hot flashes, sweating, and my nails were cracking like I never experienced.
Now my iron levels are a at their lowest “1″ and I’m trying to decide what procedure will work best with the least physical impact. I do know I want this basketball removed because it’s hell feeling bloating like a pregnant lady and not knowing when my bleeding is going to stop. Good Luck!
January 26, 2009 at 4:29 pm
I received my first Lupron shot mid December 2008 after being diagnosed with fibroids late October 2008. Birth control did not stop the excessive bleeding and that had caused my blood to level to be at an 8. After my first shot of lupron I continued to to have a period every day sometimes so heavy that I was using a pad an hour. The doctor said this is normal sometimes and it should diminish. I just received my second Lupron shot 2 weeks ago and although the bleeding has not stopped entirely, most days are light spotting and sometimes very bad cramping. My next shot is scheduled Feb 11th. I thank you ladies for all of the insight you have provided because I felt so alone when I was experiencing all these symptoms but you helped me realize how common these annoying fibroids are and what to expect with all of these new meds and side affects. I am very grateful that the lupron has not given my hot flashes, but I can definitely feel the mood swings. My doctor has continued me on birth control with the Lupron because it apparently balances out the mood swings, hopefully that was a helpful hint.
January 26, 2009 at 7:08 pm
Jamali, I can see Lupron affects everyone differently as I posted earlier; a 3 month shot lasted me over six months allowing me to bring my iron levels back to normal (the doctor told me Lupron can only be given once or twice a year at these heavy doses because it is known to cause thinning of the bones). May be your doctor should offer you the three or six month dose so you’re not subjected to so many shots and visits. Also the birth control I believe might be just to secure you don’t get pregnant because Lupron is not a guarantee.
I opted not to take a second dose just because of the brittleness of my nails. As soon as my anemia goes away (my ferriten levels are a 2) , I’m opting for removal of my massive fibroid. I would Google all the options on Fibroid Treatments because doctors sometimes push their preferences on their patients. I initially was advised to go with a hysterectomy – I’m already up in my forties. Than another doctor suggested embolization but this only shrinks it and does not remove it.
Fibroids made me feel so old but doc says they’re very common even in young ladies, 20 etc. Note, Heavy cramping and clotting is a side affect from the fibroids.
January 26, 2009 at 7:59 pm
I had several very large fibroids . I had taken 4 Lupron injections, one each month to help skrink them before I had a hysterectomy. I had a hysterectomy in Sept 2008. The doctor found endometriosis when I had surgery and had to remove that from my bowel, ect. I had a 10 week recovery and wished many times over that I would of had the sugery many years ago when I first knew I had the fibroids. After sugery I took two more Lupron injection because of the endometriosis. The Lupron shots had caused me to had a great deal of anxiety. The last Lupron injection really did a number on me. I had anxiety 24-7. I could not go out of the house or drive. I ended up in the ER with very high blood pressure because of the anxiety. I now have to take Buspirone to help manage the anxiety. I did have hot flashes, it was nothing more than a light warm feeling. I take Evening Primerose to manage the hot flashes. I had very sore and achy bones. I would not take the birth control pills that the doctor reccommened because of my age. I’m 48 and knew the risk that came along with taking the pill after age 35. The anxiety had built up over the months that I had taken the injections. My periods did stop and the fibroids got smaller. Looking back I would never had taken the Lupron if I would have know the anxiety that it would end up causing me. I would never take it again. It’s not worth having a heart attack or stroke that the anxiety could cause. The doctor in the ER had done several test to make sure that I didn’t have a heart attack because my blood pressure was so high. They gave a shot of valium and a prescription for Lorazepam and told me to watch my blood pressure and get to the ER if went up again. It’s been 2 months since my last injection and my anxiety is just now starting to get better. The doctor said it could be another month until I get back to normal. Has anyone else had a problem with anxiety from the Lupron?
January 27, 2009 at 1:06 am
I don’t usually like to blog to much on a subject but I want to make a comment about what my practitioner at Kaiser says about Lupron. Lupron is supposed to stop menstruation, (which it did for me) therefore, you’re not feeding the fibroids the blood they thrive on to GROW–cut off the blood supply and those benign tumors stop growing. Has anyone seen what they look like. I found this on Google after a woman had hers removed and took it home. Twice a child occupied my uterus and now I vision this thing; a chunk of ham that’s repulsive, and it certainly interferes with pleasurable sexual activities.
January 31, 2009 at 3:20 pm
adelavan, for what it’s worth, my nails have always been extremely hard – until I became anemic due to all the damn bleeding. Once that was taken care of, through an endometrial ablation and d&c, my nails are finally back to normal, my hair is shiny and no longer brittle, etc. amazing what happens to all of our body over time. I never was on lupron, so I don’t know if that is also a side effect – but you may be assuming that – it will take a while for them to grow back strong, but they will.
February 5, 2009 at 10:25 pm
I’ve had ONE (1) Lupron injection in May 1998 (almost 11 years ago) and I have not been my normal self. My hair sheds profusely, and consistantly. I have so much hair on the floor it is ridiculous. My hair is thin and I used to have very thick and healthy hair. I went to a few doctors: GYN, Dermotologist, and Internal Medicine Doctor and they all said that I was fine. But my hair still sheds for almost 11 years. Why? …And how can I fix this on-going issue? Please help!!!
February 7, 2009 at 3:40 am
Regina, I don’t have any experience with lupron, but I was anemic and perimenopausal and after going on estrogen, my hair is fine again… you didn’t give your age, but if you have entered menopause, maybe they can give you some estrogen… if not, maybe have them measure how much you do produce and if it’s low, they could put you on a small dose. You could go on a small patch. That’s what I do…
February 8, 2009 at 12:58 pm
First, what a great website! I have been on Lupron 3.75 mg injections for two months now, 3rd dose is due in a couple of days. A couple of years ago I had a ruptured ectopic, and they discovered endometriosis then. In December I had another surgery to remove more endo and bowel adhesions. Immediately after surgery I received the first Lupron injection. I know I am experiencing some side effects — some good, some bad. I had one period about two weeks after surgery, since then nothing, yea! I have no more pain from the endo. Pre-surgery it was really affecting my quality of life. I was dependent on Vicodin and 800 mg ibuprofen just to be able to work and function. Instead of depression, my husband & coworkers say I’m easier to get along with and laugh a lot more now. Instead of dryness, quite the opposite, and no more pain! I am experiencing muscle, joint, and bone pain in my legs and shoulders. This pain is annoying and I constantly feel like I’m about to catch a cold or the flu. I would say this is the worst side effect. I’ve also had hot flashes, but it’s winter and my office at work is always cold so it’s actually made this winter more bearable. I just dress in layers and remove clothing when necessary. My hair did seem to be brittle post surgery and I did lose some. I just got my hair cut a little shorter, professionaly deep conditioned and colored darker and that seemed to stop. I think that was just from the stress and anxiety of surgery and starting the Lupron. If I had to make the decision again, yes I would chose the Lupron. My husband and I have resolved ourselves to the fact that we won’t be having children and we are happy with that decision. I’m really to the point that I wish I could just have a hysterectomy and be done with everything, but my gyn wants to try to extend that for a couple of years. I am thankful that I am in my forties and have the fertility drugs, ruptured ectopic and disappointment of not getting pregnant behind me. For me, the Lupron has been good.
February 8, 2009 at 4:21 pm
Sue…..
Hi, If you dont mind a have a few questions, i am starting Enantone, which is equivalent to Lupron but in Europe. Due to start the next few days and am terrified. I came to this wonderful website over 2 years ago when i was due for my myomectomy….if it wasnt for the wonderful women here, i dont know if i would have done it.
Anyway, i am back, have tried with no success for 2 years to get pregnant and that as i have been told is no longer an option. But i have been miserable for 2 months with consistent bleeding and pain. I have a great dr. in NY but my hubby is in Europe for work, so i am pretty much stuck here now.
I know i cannot live like this much longer, but i have not put the pregnancy thing behind me yet, like you. I am trying, but its still too new to me. I thought after my surgery 2 years ago, i would definately get pregnant.
I am told hyster is the only solution, but wow…that seems so final? any thoughts you would like to share i will greatly appreciate it…..
Gab
February 8, 2009 at 10:38 pm
Gabriela –
I can say that the Lupron has stopped my periods, and that has made me feel so much better. My doctor has said that after the 6 months of Lupron, I will probably go on depo shots to keep me from getting a period. For me the pain was getting to be unbearable, and now I don’t have that any more. Is your bleeding and pain from endometriosis? My doctor has told me that the hyster is the only permanent solution, but there are other temporary options (Lupron, birth control pill, etc) For me the side effects of Lupron so far are much more bearable than the endo.
Sue
February 28, 2009 at 2:02 pm
Hi I just started with my first dose of lupron on Feb. 26 and have read nothin but horror stories untill I found this site! Thank you to all who have sucess with this med and posting positive ideas and thoughts!
I haven’t really had any side effects, (some nausea and stomache ache and I Lose train of thought) We are trying to shrink cysts and relieve me from pelvic pain and constant pressure. Thanks for positive info!!!!
March 1, 2009 at 12:47 pm
I’ve read this site and now I feel much better. I still have some questions. I finished my 3 shots of Lupron (1 every month for 3 months) in Nov 2008. Now its march 2009 and I started my period or what I think its my period. Its just that now its not a lot and painful but its almost the passing stages of spotting and dark. Is this my period? Should I be alarm? I can not have surgery now because Im a deployed Soldier and I wont be back home until the fall. I still have 3 more shots of Lupron untouch but they were not part of the plan. Can I get back on Lupron for another 3 shots? I was told that if I start my period I may have to go home early and get my surgery. I dont want to go home early unless I have to, I would much rather get back on the treatment for another 3 shots if thats possible.
March 1, 2009 at 12:59 pm
When I first got the shots I just experienced hot flashes and MOODY. But my period and pain stopped right after my first shot. I also had some hair loss. But the benefits of being pain free and period free ( I had my period for over 3 months) overpassed my side effects. I workout more and lost some weight and i wear heavy gear all day and have no issues. Im glad i took Lupron
March 6, 2009 at 12:06 am
I was diagnosed with prostate cancer. I’m 73 years old. I had 44 days of radiation and then was put on lupron shots. I had a total of 4 lupron and after that I refused to take any more because of the effects. I don’t seem to be any the worse off for not taking them. I have a friend who was told by his dr that he would have to take them for the rest of his life or he would die. One every 4 months. I feel sorry for him as they seem to really affect him adversly. Does this seem right to you. I have told him that he needs to get a second opinion because I think it’s too much for him. Or at least he needs to sit down with his dr and have an intelligent conversation about this.
Please give me some information of this.
Thank you, Fred
March 21, 2009 at 9:11 pm
Hi! Its three weeks into my first Lupron shot and I truely hate life, from mood swings to weight loss, I look like a concentration camp victim. i don’t sleep and the bleeding that I’ve had is horrendus. I have actually been put on anti anxiety meds to keep me (moods) leveled off. Unfortunatly my Doc GYN wants me to do two more shots before we look at any other alternative treatments. now on the positive side I have less pelvic pressure, the pain level is the same but I’m not having to run to the bathroom as ofen as I was. My PCP wants me off of the Luupron and addback meds. I don’t know who to trust…. The Gyn ive seen only 3 times my PCP ive known for 2 years….. what do you guys think?
Terrie
March 28, 2009 at 5:08 pm
I have vericose veins in my uterus and endo on my ureters my only options are Lupron or hysterectomy. Neither of which sound promising to me. Obesity runs rapidly in my family, I have somehow managed to maintain my average weight but I have to pay close attention, the weight gain freaks me out…but so does everything else. I have 4 children to take care of and feel I can not afford any of these side effects…I guess I just need to get it off my chest…I’m happy to hear the different good/bad side effects thanks to everyone who took the time to post!
April 11, 2009 at 8:51 pm
I’ve heard horriable story about the lupron shot, but I had to proceed since I was having surgery to remove my little golf balls. I’ve received my first shot 3/26. I didn’t really notice any side effect until today 4/11 when my cycle started. I was really upset when I saw that blood. But I knew something was up because my breast were very sore. I’m going into my third week hoping that the bleeding stop because I am celebrating my 15yr anniversay on a cruise and don’t want to be bother with my cycle, please pray. Other than that my moods are normal I get moody any way. Breast is fuller like that LOL. Have the muchies sometimes. I’ll check back in when my cycle stop or if there is any noticable changes with me. My surgery is 5/27.
April 11, 2009 at 8:57 pm
By the way…I have to no regrets for taken the lupron shot. I would do it again, if only my cycle would really stop. Oh yeah…I’ve notice that intercourse is not that painful anymore, guess the medicine is shrinking those golf balls after all.
April 11, 2009 at 9:03 pm
Golf balls aka Fibroids…my special term for them. Good luck.
April 13, 2009 at 9:25 am
NOT A BAD LUPRON EXPERIENCE:
All in all, I just wanted to show that not all experiences with Lupron are bad. I will get my last shot at the end of May. Then hopefully my next pap will come back clear and we can start trying to get pregnant later this year. Good luck to everyone & please pray that all of this works out in the end! 
Back in November of 08 I was told that I needed to have a cervical conization to remove the part of my cervix that had developed stage 3 displaysia. During my surgery it was found that I also had endometriosis on my right tube & ovary. My doctor suggested that I get a shot of Lupron once a month for 6 months to shrink the endo and keep more from forming. Of course I was very nervous. Then I found this site and read all the horror stories that you all have had with Lupron. So then the nervousness turned to just plain scared. But my doctor assured me that all of the symptoms that I had read about weren’t common in all women and that there was a good chance that it wouldn’t be that bad. She was right. I got my first shot on New Year’s Eve. Didn’t have any side effects from it right away. Had my last cycle in January and haven’t had any bleeding since… be it spotting or heavy. By February I was feeling very emotional… mad as fire one minute, crying my eyes out the next and with no reason for either. So my doctor put me on Celexa. Basically, it’s an antidepressant. Although that is not something that I am proud to have to take, it really helps me stay level, mentally & emotionally. I have managed to plan my whole wedding in these 4 months (I’m getting married May 2nd!!) and my fiance’ hasn’t killed me yet!
April 19, 2009 at 1:12 pm
Sorry, to hear about your awful experience. Well, I said I would report back. My cycle has final ended. Longer than usual, but glad it’s over. It was more spotting than anything. I had two heavy days of bleeding. Normally, have one day. I am having my fibroid remove. Doctor wanted to give me a His…just couldn’t bring myself to it. After reading all of those stories on previous website. Because once it’s gone its gone! Hopefully, I have just six more years with my cycle. Since I am 44yrs old already. Hoping that I don’t see my cycle any more for at least a few months.
April 19, 2009 at 1:18 pm
Oh, yeah congrats! on your wedding day…that’s my granddaughter’s first birthday. You will do fine. You might have been moody all because of your wedding, it’s a lot to deal with. Jealous, that you are doing so well in not seeing your cycle. I am hoping for the same this next month. And hoping that it don’t come back no time soon. Best wishes on your second injection.
May 21, 2009 at 9:10 am
Hi lady’s,
I had my first Lupron 3.75 injection a few days ago. No one says how soon the side effects start after 1st shot. Directly following the shot (within hours) all my lower muscles were so sore I had to lay in bed all day. Next day I had such a pain in my side and back I couldn’t function. 3rd day spent most in ER, thought it was kidney stones, tests negative and no idea why I’m having this pain. My GYN says it’s way to soon to start side effects from Lupron and oppistie side of injection sight. I have had headaches but could be from stress. Pain in side is still there today. Any idea’s??? I’m so happy to have found this site. Like everyone all you can find is negative stuff and people giving warrnings to never take Lupron. I’m being treated for endo, but thats just a guess. I didn’t do the scope to find out, just went by symtoms. Mostlt pain during intercourse. My periods arn’t as bad as most, just lots of spotting for days and small clots. I started Lupron at 1st day of period, it’s slowed and comes and goes, manly as spots. I thank you all for your experiences an support!!!!
May 27, 2009 at 7:57 am
Hello everyone! I am 25 yrs old and diagnosed with uterine fibroids. I had my first injection of triptorelin (averkap) 3.75 a week ago (thats a week before my period)…dn’t know anyone who has taken this type of medicine and I really hope there is someone out there who is sharing my experience.. i was fine for the first 4 days, then on saturday til today I started having really severe menstrual cramps on my left side which is where the large fibroid is.. I have also had my first hot flush today and at work i had a few major sweats.. I am actually really scared! If there is someone out there who is also taking triptorelin it would be great to hear from you
May 27, 2009 at 10:43 am
HI Lara, wow you had your lupron before your period. I had my 1st on my first day of period. Your left side pain? Does it hurt to touch the side underyour arm pit about half way down?? Thats what I had the day after my injection, so bad it hurt to walk. Dr’s put me on narcartics and muscle relaxerso 3rd day of pain after i spent all day in ER running tests. On day 6 after shot felt much better. But it was not a cramp. I havn’t had any cramps. I have been spotting since my shot, maybe it’s your period cramp. Have you called your Dr? My Dr. doesn’t seem to have any answers about the injections and side effects, like when they start. sorry post so long.
May 28, 2009 at 7:27 am
Hey Jessa, yeah i mean I asked the doctor to start the injection just after my period and he said to start it straight away! it doesn’t hurt me under my armpit although I have really tender breasts!maybe its ur breast also and it seems like its ur armpit. where did u have the injection? i had mine on the bum..it was sore for 2 days..it did say in the leaflet that the injection site would be temporarily tender..gosh u must have been in pain..ive been just the same..on monday (5 days after injection) i had such a cramp i was sent to the clinic to have also strong morphine injection..i nearly died after it..the side effects were aweful..i told him my symptoms n my doctor said i will feel worst for 1st 2 weeks..did urs say the same? he said as the body is trying to clear the estrogen there will be a temporary increase of estrogen and then the pains will subside..and then he told me i will start to see the spotting..am pretty sure its my period cramp but am late one week…he didnt say anything strange about my case..i bet he doesnt know also! sorry my post also a bit long!
May 28, 2009 at 10:56 am
Ithink when I said armpit I confused you, I ment down my side just under my breast butt right in my side. i guess it’s hard to explian, but so far I haven’t had any more pain, although I couldn’t sleep last night even after taking sleeping pills. I only got like 3hous sleep. Other than that I’m okay, not even night sweats. I talked to my Dr and she said spotting is normal but couldn’t tell me for how long. Not many people know about lupron. Oh I got the injection in my hip. Didn’t hurt but I could feel my muscle swell up.
May 28, 2009 at 3:27 pm
Thats good..am feeling better today’s second half of the day…no cramps! i hope its over, i have lower back pain however which is constant throughout the day and i wake up regularly in the night and have to take a painkiller…my doc told me the spotting is to happen regularly…what really scares me is one of the side effects, actually 2 my doc mentioned….like dry vagina and reduced libido…sounds really scary…u havent experienced these have you? am worried that once the estrogen stops being produced everything will slow down…but most menopaused women dnt have any problems! so we shudnt either!! oo i dnt know!!
May 28, 2009 at 3:51 pm
I haven’t personally had those sied effects yet, my drive is normal high so if it does slow abit my hubby might be happy!!!!! I have had increased achne, thats a pain in the a$$. I have ome lower back pain to but not that bead. hopefully I wont have the joint pain. I have been takng lots of calcium.
May 29, 2009 at 6:36 am
great!!!! i have to start taking calcium also…keep me updated with ur symptoms if they change and good luck with ur therapy!
May 30, 2009 at 6:30 am
Hi all,
Well, I received my first Lupron injection on 5/28/09. Was put on a progestin the day before to counter any side effects. I’m supposed to have a monthly shot for three months and lap myomectomy at the end of August. I guess it’s too soon to see how it’s affected me. Will keep in touch.
May 30, 2009 at 12:00 pm
hey agnes, I am also having a lap myomectomy in 3 months…i started the injection on the 19th of May..my doc prescribed prog also but i didnt really like the side effects i read! i will be taking calcium supplements i suppose…
May 30, 2009 at 3:50 pm
Lara, you better get on calcium, you don’t want bone loss. Have you had any headaches, I keep having them every other day or 2. I finally stopped spotting!!!!! Hope it stays that way! Agnes, Are yoou taking lupron for infertillity? or other treatment?
May 31, 2009 at 3:33 am
Jessa, I took my first calcium tablet today, the 600mg, i havent told my doctor, il call him next week though..he asked me to take progesterone 100mg to prevent bone loss, did she ask you to take it also? i dnt like the side effects so am not taking it…im gonna try and tolerate the pain and take lots of vitamins. No dnt have headaches at the moment..i just have really painful lower back and this morning i sort of felt a deep pain on the bone of my upper leg..it was for just a split second thanks god. However I must say its 2 days now and the cramping has stopped! Thats a relief at least
May 31, 2009 at 3:39 am
thats great you also stopped spotting in ur case of endo..i havent started yet..i actually hope it starts cos it means fibroid is startin to degenerate!
May 31, 2009 at 3:34 pm
I am taking Norethindrone 5mg daily for bone loss, and calcium 1000mg daily. I already have arthritis in my back and I have scolliosis so I am high risk for ostioperosis (sorry my spelling sucks). I am very tiny 5′3 and just 100Ibs so bone loss is very bad for me. I’m not aware of fibriods or what they are, how do you know if you have them?
May 31, 2009 at 7:28 pm
I made it! I have now been on the Lupron 3.75 for 6 months — with no add back therapy! Tomorrow I visit my gyn to find out the next course of treatment for my endo. The lupron has worked wonders for me…the pain that was once sometimes debilitating is very minimal. I’m almost scared to go off the Lupron
Does anyone have any advice or experiences with life after the lupron for endo? I wish those just starting their treatment much success.
June 1, 2009 at 2:19 am
Hi Jessa, I’m taking Lupron to reduce a 16 cm fibroid for a lap myomectomy later this summer. According to the surgeon and my gyn, I have to take three shots. Apparently, I have a few other tumors, but this one is so large that the instruments would have no room to move around. When I saw my MRI, I wanted to cry.
I hope I have very few side effects of either drug, but I need this to be taken care of now. I look pregnant and several people have asked me how far along am I. I’m just sick of it.
June 1, 2009 at 3:42 am
Hey jessa fibroids as benign tumors of the uterus.. 80-90% of women have them doctors have said and bcos they may cause no symptoms u may not even know they exist..they are basically harmless tissue growth but if they get too big they need to be removed if u wanna get pregnant or if its becoming too uncomfortable..jessa and agnes, i have 1 fibroid which is 10cm and its the big one i have and a big troubler! it makes me urinate frequently and making my periods REAAAALLY crampy so i cant stand it anymore, plus it makes u look pregnant as agnes said! i also have another 2 smaller ones of 3 and 4cm….jessa i saw them through an abdominal ultrasound and transvaginal scan..they stick this long telescope inside you!!! NOT A NICE FEELING!!!
Oh by the way i started spotting for the first time yesterday but my period also came and its like a SEA!! never had this before..i called my gynae, he said its normal and to take postan forte to reduce the flow…
June 3, 2009 at 12:24 am
I’m scheduled for an ab myomectomy next month..my doctor has recommended that I take one shot of lupron. Hearing of all the side effects makes me wonder if it’s worth taking one shot (especially considering the potential side effects)…how much shrinkage can occur in 1 cycle??
June 3, 2009 at 8:05 am
Tove, They are not severe…its one month i have the injection so far..ok i sweat a lot and have constant back pain..but i still go out and have fun..I dnt think they are delibitating..I go to the beach everyday…I work…drive…I still do everything…you will manage ok am sure!!! well my tummy has gone down a bit since the first injection i have to say..i looked EXTREMELY bloated at the start…I can see the difference..are u not taking 3 shots?
June 7, 2009 at 5:57 pm
Hi Lara,
No, I guess 1 shot is all I have time for prior to the surgery (it was just scheduled recently)..that’s why I wonder whether it was even worthwhile to take it but that’s good to hear that you’ve already noted benefits with 1 shot, and that the side effects have been manageable for you…
June 7, 2009 at 8:21 pm
Tove,
Everyone is different, I also have the “sweats” but I seem to only really notice it at night. I get headaches alot, I havn’t spotted since my period at time of injection, 3 weeks ago. I go for my 2nd on the 15th. Lots of back pain, I’m going to go to PT to help with the pain, I ws waiting to see if I could control it with streches and muscle relaxers my Dr gave me Friday, but then Sat I fell in the shower, so PT it is. Good luck!!
June 10, 2009 at 7:55 am
I don’t know if its odd, but I have no pain anymore since my period, am not spotting either..I hope the injection is working! But if everyone had it and its working, then why shudn’t it on me?!! I mean I live in a hot country,, dnt know if my hot flushes get mixed up with the intense heat..in other words, dnt know if am actually sweating from the injection or the heat! my back/bone pain has disappeared all of a sudden after my period and after all that intense pain..don’t know whats going on…am going to get my second injection on the 19th of June..really worried its not working anymore. But is it possible??! or a maybe am lucky?!
June 10, 2009 at 7:56 am
Jessa whats PT? Hope the pains are not too delibitating..all the best of luck in improvement
June 10, 2009 at 10:53 am
Lara, Hope your still feeling good! PT stands for Physical therapy. I also have athritis and scoliosis (soory my spelling is bad). So in ither words I have alot of back problems, but the pain in my hips (mostly left) is almost unbarable. So I’m starting PT on monday and getting my 2nd injection. Hopefully I won’t have the muscle pain like I did with the first shot. My hot flashes have calmed down, but I was only having them at night. Other than that I feel great!!!! I did fall in the shower Sat so that didn’t hel my back!!!
June 10, 2009 at 11:55 am
I have both fibroids and endo and was given 3 month Zoladex implant (am in the UK, so equivalent of Lupron) on 1st May, with a view to having an abdo myomectomy in July I had a dreadfully heavy and painful withdrawal bleed about 10 days afterwards…then nothing until today when i started bleeding with cramp…was terrified of having another period as they are meant to stop completely. It now seems to have eased…was wondering if anyone has experienced anything similar?
June 10, 2009 at 12:09 pm
Oh, and meant to add that I am taking Livial which is an add-back HRT, and have actually suffered hardly any ill effects from the injection other than that dreadful withdrawal bleed. No sweats or hot flushes whatsoever; so do speak to your gynaecologist if you are worried about this.
June 11, 2009 at 12:48 pm
Jessa, am hoping you back problems settle asap! I totally understand how you must feel..for the first time in my life i had really back bone pain, i thought I was gonna die from the severe pain! so I can imagine your situation but keep strong and ur gonna get thru it!!!! we are tought women!!! I keep having hot flushes..all day today!! and the intense heat has caused me to have yeast infection again…i had one 3 weeks ago..treated it with cream and now it came back again..its also the humidity in this country..causes changes in body temperature..i HATE IT…have to go to gynaecologist again!
June 11, 2009 at 3:45 pm
Hey Girls,
If you are having problems with hot flashes while on Lupron, try Evening Primrose. You can get it at any Health Food Store. It worked wonders for me with the hot flashes. I had to take 6 Lupron shots for Fibroid tumors and endometriosis. One shot a month for 6 months. I still ended up having a hysterectomy 6 weeks after my last injection of Lupron. The last two shots of Lupron I had taken was a nightmare for me. Good luck Girls!
June 11, 2009 at 4:12 pm
thanks!!! I think I will buy it bcos am too hot and am feeling the summer heat more intensely…if am sitting for long periods and i get up am completely soaking..!
June 14, 2009 at 10:44 pm
Been reading the posts, they have helped alot, thanks! Anyone START bleeding AFTER taking lupron? i am 33, took first shot almost 2 1/2 weeks ago for endo tx. Had stopped bleeding after going off depo the week prior to the shot. Then today WHAM! Here we go again? I have had cramps continuously, in addition to the chronic pelvic pain, so this was a surprise.
Thanks,
Beck
June 15, 2009 at 9:32 am
About 10 days after my Zoladex shot (UK equivalent of Lupron) I had a really bad bleed…apparently it is completely normal and is your withdrawal from oestrogen. Be warned that it could be a bad one…mine was worse than my period normally is (and that’s pretty bad, as all of us with endo and fibroids know!)
June 16, 2009 at 3:29 am
I will have my second Lupron injection on the 26th. So far, I’ve been alright. I started sweating in the early morning and it’s causing me to wake up before my alarm goes off.
Haven’t had bleeding problems. The only issue I have is gas. It’s so bad that sometimes my stomach will ache. Has anyone had this problem?
June 16, 2009 at 7:48 am
I had my 2nd lupron injection yesterday. I haven’t had any bleeding since the 1st shot which was given at the start of my last period. I havn’t had sweats in a few days now!!!! My back still hurts, I started physical therapy yesterday and it did give releif, only pain right now is at injection site (feels like a tetnus shot). All else is great, already relief during sex, alot less pain!!!!!!!!! Thats what I was focused on! I won’t know about the cancer cells until mt next biopsy next year, but I have my fingers crossed.
June 16, 2009 at 3:22 pm
Wow….. SO glad to have found this site. I am going in for my first Lupron injection in a week and I have to tell you I was (kind of still am) really scared about it. Everything I have read on the internet (until this site) has been nothing total horror stories. I had a laparoscopy in April to try and remove my Endometreosis, but it was all in places they couldn’t cut. They did remove a benign tumor, an ovary and tube though. I also had an ablation that day (but I did still get a period after – only 4 days, not 10 so it’s better). We also found out I have Von Willebrands disease (blood disorder where blood dosn’t clot they way it should). So… given all that history I guess I am wondering if there will be bleeding and what the side affects will be for me. Mostly I am scared of any long term side-effects, but I have been in pain for 2-3 years now and really just want some relief. I am thinking it is worth a shot, no pun intended.
Thank you to all of you for posting your experiences. It has helped me a lot to read all of your stories and I don’t feel quite as scared as I did before. I will definitly be coming back to this site.
Best wishes to you all and God Bless.
June 17, 2009 at 6:27 am
uuu what interesting stories! I am getting my second injection this Friday…so far I have not had any pain at all..just sweating A LOT…day and night sweats….my period is also due some time in the next week or so and I hope it doesn\’t come cos it means the injection is working…i\’ve had some strange twitching on my left ovary..dunno what that means but am not really supposed to ovulate! Don\’t have bone pain/back ache anymore…I have a feeling thought am gonna cramp again just before my period week just like last month.
June 17, 2009 at 6:28 am
since my fibroid, its caused me to feel really bloated, especially my stomach..but since the injection, all that has subsided
June 17, 2009 at 6:41 am
So the bloating will go down hopefully? i have gone from a size 1 to a 7, lost my 4-pak and now have a budda belly… i am really not enjoying the budda belly along with the pain
to Kristy – Von Willebrands runs in my family too. Some days you can cut yourself and not bleed at all, others it wont stop. depends on what level you have too, most people fall in the 1, and sometimes 2. there are some good websites out there regarding this, if you just found out about it. Many of my doctors didnt know what it was.
( http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=182&contentid=47&rptname=bleeding ) hope this helps.
June 17, 2009 at 12:03 pm
Beck, thank you! that is a great resource! I had never even heard of Von Willibrands until they told me I had it. But it makes so much sense now. All those bad nosebleeds, heavy periods, complications with the births of both my kids, bleeding gums etc. At least I know what was causing all that. I am lucky that I do only have type 1. Thank you again for that website, it is full of great information.
I hope your pain goes away soon and you start feeling better!
June 17, 2009 at 9:59 pm
I have had Lupron at 2 different times to shrink my fibroid. I had 7 of the one month injections about 2 1/2 years ago. My period stopped and I had mild hot flashes. Basically minimal side effects. However my fibroid barely shrank. It was 5.5cm at the time.
Then 7 months ago, I decided to get it removed. My doctor put me on Lupron again to shrink the fibroid to make my surgery go a lot smoother. It was 6.5cm at the time. However, I had a total of two injections – one every three months. The dosage is a lot more all at once – and I got really sick on the second injection. I ended up in the ER – nausea, tingling in my arms, headache, vomiting and chills. They concluded it was the injection I had the day before. It took 2 days to feel better. I had other side effects – moodiness, decrease in sex drive, etc. However, my fibroid shrunk to 3.7 cm.
June 18, 2009 at 1:44 pm
I had lupron last Jan 2008 3 month shot, and again in april
i’m the exception to the rule i loved it!….other than mild hot flashes and night sweats, i had energy because i wasn’t anemic anymore, my period stopped all together the enrire time and resumed in october 2008 ( 10 months of bliss!)
my doc didn’t give me lupron to prepare for surg she gae it to me to minimize my symptoms and buy me time to decide if i wanted to have children right away or get a myeo …in any event i was so relived not to have symptoms that i totally let the worries of broids slip away…best summer i ever had!
and my fibroids shrank to half their size including the smaller ones reabsorbed back into the lining all together. i went on micronor as a step down and here am june 2009 and looking at surg and not a happy camper before i couldn’t even feel them and now they feel like they doubled in size
June 18, 2009 at 5:08 pm
If you take a preganancy test while taking lupron will it give false results? I don’t think Im, preganat but i was wondering how you can tell when all your hormones are messed up? Not much to report, back and hip pain is worse than ever, Phisical therapy helps but only few hours, no one willl give me pain meds they just keep saying take ibuprofen. I have gained 10 Lbs in the past month but for me thats great, I havn’t been able to gain weight no matter how hard I try. Most of the weight has gone to my belly, thats stincks.
June 19, 2009 at 8:44 am
I am having my second injection in just under one hour..feeling rather nervous because I don’t know how my body is going to react from it this time…..really scared!
June 19, 2009 at 1:27 pm
Is it a thre month shot? The monthly shot seems to be milder.
I had my shot on a Friday as well. I started feeling not to well the night of my shot. By the following morning I was really sick. I ended up in the ER per the recommendation of the on call nurse at my doctors office. In the end, all the ER could do was percribe a drug they give to cancer patients to stop the nausea that disolved under the tongue called Zofran. You may have absolutely no reaction or a very mild one. Maybe the injection had more effect on me because I am on the smaller side. Anyways, if you experiennce what I experienced – get that nausea drug as soon as you can! (If the nausea is the main symptom) Once I took that, it made me feel so much better!!
Try not to be scared – just be cautious! Every body is different. In the end my fibroid shrunk by almost half from the Lupron and despite the side effects, I was glad I did it. Before the Lupron, my fibroid was a bit more riskier to operate on because it was so big and it was located near a major blood artery/vessel. I just had my surgery a week ago and it went really well. Partly, I think, because my fibroid was reduced thanks to the Lupron.
Take it easy and think positive thoughts.
June 20, 2009 at 9:15 am
Hi, Michelle!
Its a three month shot also…Its Triptorelin I am taking..I think the equivalent is Lupron I suppose in the USA. I took my shot yesterday but like you said everybody is different.. I didn’t have any side effects actually.. I have the major side effect however which is the hot flushes!!! I have that EVERY SINGLE DAY since I started it. I already have an anti-emetic called Stemetil..just in case!!!! It works so well for my nausea…. I will have my surgery in August….how did you feel after the surgery? Did you feel ill? I am scared of feeling sick after the surgery or feeling strong pain. Did you feel a lot of pain? good luck with the recovery!!
June 20, 2009 at 3:03 pm
Lara, How can you be on the 3 month shot every month??? Seems to me you feel good then bad then good again??? Are you for real???
June 21, 2009 at 4:35 am
its one injection per month!!!! for 3 months. Like everybody else! What did you think!!! I don’t know WHAT am feeling!!!! i think triptorelin works differently..for 1st 2 weeks am supposed to feel really shit..hence all that cramping/bone/back ache/hot flushes I had..then its supposed to get better..its a month now i have hot flushes and no other symptoms..i took my second injection on friday and really its supposed to continue to run smoothly…however cos my period is supposed to stop this month and have spotting..i dont know what am expecting really..if am gonna be in pain or not! I dnt know if triptorelin is the same as Lupron!
June 21, 2009 at 4:38 am
I forgot to mention..i have been having severe mood swings due to this injections
June 21, 2009 at 11:36 am
I don’t know what your talking about, I’m having 1 shot a month for 6 months, and there are injections just every 3 months. If you look at your posts you change what your feeling every time. Mine is always the same. Back pain/ joint pain, hot flashes.You just don’t seen consistant thats all i’m saying.
June 21, 2009 at 2:16 pm
Hey Jessa and Lara,
I have had both types of shots. Two years ago I tried the once a month type. And 7 month sago I tried the every three month type of shot. My reactions were more severe and did morph over time. The first shot (the every three month shot) I actually felt really good for the first two weeks. It was wierd. But when I got another shot three months later, I had really bad reactions to it and ended up in the ER. (See my post above on June 17).
Lara – you asked about recovery a few days ago. I only took vicoden after surgery and I am still on it – although a much lower dose. After surgery, you will be sore. However, I only felt sore when the pain meds started to wear off. Also, for the first 5 days it was hard to bend over or do any type of movement other than walkiing forward. So I guess, I did not feel sick and I was not in a lot of pain at all. I did not have an appetite though. I think the anesthesia could make some people sick – especially if you get car sick easily or have a tender stomache. I spent a lot of time worrying over my surgery and I wish I had not. I am glad I had it. It had been a week and a half since my surgery. I get tired easily and I get sore (near my incesions) when the pain med wears off and it is at the end of the day. I feel great in the morning – and I am sleeping like a rock!
For the surery, make sure you are very comfortable with the surgeon and his/her capibility to do the surgery. My doctor had done a ton of these type of surgeries and was highly regarded by my other doctors. Don’t get someone who is just learning or has done relatively few surgeries. And just to clerify – my surgery was done laproscopically. through 4 incisions.
I am sure you will have success in your surgery and all will be fine.
June 22, 2009 at 6:49 am
Sorry Jessa, I have one injection a month..and it will be a 3 month therapy… am on my second injection (2nd month) and I have one more injection…next month. my symptoms were at its peak the 1st 2 weeks following the first injection..bone/back pain, period cramp, hot flushes, sweats and mood swings..I spotted just on the first day of my period and then after that I had no more pain..nothing…I’ve only had hot flushes and mood swings and then this yeast infection that kept creeping up…so I was worried the injection wasn’t working bcos all of a sudden I didn’t have any side effects anymore…that’s all…
June 22, 2009 at 8:20 am
Michelle, I am really glad you’ve had a good post-operative experience, I wish mine will go well! I am living in Cyprus and although it is a small country and althought there are many specialist doctors, some haven’t had the sort of ‘30-year-experience’ within surgery. That’s what worried me, but I found a cypriod doctor who graduated from london university and is already a member of the board of royal college of obstetrics and gynaecologists and to be a member in london you really need to be a strong consultant surgeon.he was the only specialist who showed confidence in offering to operate me..he said he’s been operating fibroids for the last 35 years in cyprus and england and he knew the whole process inside out so he must know what he’s talking about so i’ve agreed to let him operate me…I mean nobody knows what will happen on the day anyway but my gut instinct tells me to go for it….its private also so it better be spot on for what am paying for!
I am excited and nervous at the same time as I’ve never had an operation before..I have one more injection to go and that’s it..I hope I won’t need a fourth one actually..its supposed to be just 3 for the time being.
I asked him to have laparoscopy, he told me it will be like pulling the camel’s arse out of a needle eye!!! He’s got such funny sense of humour! but I don’t know I’m hearing different opinions on open surgery and laparoscopy…lapa you only have one night stay compared to 5/6 with open. Less invasive also..he says its much better….I don’t know…but if my fibroid shrinks to 5cm I hope he will do laparoscopy cos I dn’t wanna have scars on my tummy!
June 22, 2009 at 2:44 pm
Went in for my very 1st Lupron injection today. So far I don’t feel any different, but I understand the side-effects may take time to start happening (like a week or so?). I am anxious to see if this helps me within a mo. or so (treating endometriosis). I was suprized how little knowledge the staff at my doctors office had. I was under the impression I got the 1 mo. shot. After the fact the nurse told me she wasn’t sure if it was the 1 mo. or 3 mo. shot. She ‘thinks’ it was the 1 mo. shot, but my doc is out of town until Thurs. She handed me a prescription for some Progestin that was in my file. I asked her if this was the “adback’ (sp?) therapy my dr. told me about… again she didn’t know. I asked “well when am I supposed to start this prescription” surprise surprise…. she didn’t know. WTF? I am thinking I need a new dr. when this is all over. Now I have to wait 1-3 days til she gets back to ask her. Did any of you take this RX with the Lupron, and if so when did you start it ? Do I wait for side-effects, or take it before they happen. I just love it when people in the medical profession are so flippin useless!!!! Any advice is much appreciated.
June 22, 2009 at 5:50 pm
Kristy,
I took my first injection (1 month type) almost a month ago. Within 4 days i got my first hot flash and mood swings started a bit before. I was surprised how quickly that happened, but meds always work funny on me. I have had a couple of good days though. I asked my dr for something for the hot flashes etc. for when they got bad. 1) the effexor (pristiq) made me very dizzy and nauseous. I stopped it after 1 pill.
2) the other one is a hormone, nor-something. I am not going to take that unless i get really bad. Especially after the fiasco with the pristiq.
It is very frustrating when someone doesnt know, or doesnt care to find out what is going on. I had my dr tell me my pain was all in my head, even after finding the endo and other stuff in the lap. But hey, we are also 10 years behind most medicine on this island too. Don’t give up, keep pushing, even if you have to get another dr that “fits” with you and your needs.
hope this helps.
June 23, 2009 at 8:21 am
Hey Kirsty, the Progestin is the add-back therapy to prevent bone density loss and slow down osteoporosis that is brought on due to the reduction of oestrogen. You take it 2 a day, one morning one night..you really should start it as you start the injection, but it depends on the person again…I was prescribed the same drug but its 2 months now and I don’t really have bone pain so I didn’t wanna take it bcos its got some funny side effects! I’d rather have just the hot flush thanks!!! nothing else!! But thats what its used for..its a low dose add back of oestrogen to make ur side effects from the injection not so powerful and more tolerable…hope I was clear!
June 23, 2009 at 10:56 am
Beck, thank you!!! Sounds like you dealt with some of the same frustrations I did too! Trying to get the help to get rid of the endometriosis even though they knew it was there. Sorry your first prescription made you feel so sick too! No fun. Thank you for your comments, it does help.
Lara, Thank you very much! That was clear and more informative than the info I got AT the dr’s office!!!! I think i am going to wait until the side-effects of Lupron start and see if I can just deal with them. I don’t want to have any unnecesary side-effects I don’t have to, or take anything else I don’t have to.
I hope you are all feeling well and having a good week. Thanks again!
July 3, 2009 at 3:01 am
Hi all,
On Monday, I received my second Lupron injection. I’ve been bleeding since the middle of June and was told that it will stop eventually. I still wake in earlier than usual but the night sweats are not as bad as before. I do still have minor headaches.
My surgery is scheduled for the end of August. The thought of the procedure scares me, but I want to get rid of this large mass in my belly so people can stop staring at me and asking when the baby’s due. I’ve never had such a hard time losing weight in my life. After the procedure, I don’t thinks I’ll ever take BCPs again. You never realize how much hormones affect your body until they are out of sync.
July 6, 2009 at 10:54 am
Hello everyone,
I stumbled upon this site after searching for some information about bleeding I am experiencing while on Lupron Depot.
I appreciate the discussion about the bell curve and the large number of negative reviews. I am in the middle of my second 6 month course of Lupron and I fully understand the lack of positive reviews. The first time I did a course of Lupron (about 4 years ago), I had no symptoms or problems. In fact, my cycle stopped after the first shot and didn’t return until 3 months after my last shot. No hot flashes, no weight gain, no bleeding. Just 9 months free of symptoms. Unfortunately, the symptoms did not fully abate after I was done with the course.
Now I’m on a second course of Lupron, and my experience is much different… I was specifically bothered by the frequent bleeding and cramps that I am experiencing. But after reading other posts, I realize that I don’t have it as bad as many others. Thanks for sharing your experiences, it has helped me to better understand my side effects.
Good luck to all,
Elizabeth
July 7, 2009 at 9:24 pm
Wanted to share again –
Don’t try to “tough it out” without the add back therapy. I have been getting the monthly 3.75 mg injections for eight months now. Just started the add back therapy 2 weeks ago — and what a difference it makes! I’m still having some hot flashes, but it’s helping with the emotional side. Before I was crying for what seemed like no reason. (My poor husband could not say or do anything right.) So if you are having issues, please don’t be afraid to talk them over with your dr to see if the add back will help. Sue