The original visitor deep vein thrombosis question:
Ann-Marie: Has anyone else had any problems with deep vein thrombosis? The weight and size of my growth is so big now and is pressing on my veins/arteries. I have had two clots in my legs and have been put on Warfarin (the rat poison!!! – how did they find out that worked?!!!) and I have just spent 2 fun-filled nights in hospital with the suspicion it had travelled to my lungs (phew, it hadn’t) but I really don’t want to have any more problems. In addition I have to come off the Warfarin and go on stomach injections (ughhh!) for a week before my op in 2 weeks!! Any suggestions/comments would be appreciated.
I had previously heard of DVT but not in connection with fibroids. Reading through the visitor comment, it makes complete sense that this would be a related problem. Found some information so I’m including those links:
Deep Vein Thrombosis (Wikipedia)
Warfarin (Wikipedia)
Deep Venous Thrombosis (MedlinePlus)
What is Deep Vein Thrombosis? (NHLBI)
These links include signs and symptoms, diagnosis, and treatment.
[Added September 17, 2006] Sprkly commented on the importance of being aware of DVT symptoms. I agree and have decided to list them here. From the NHLBI web site:
It is important to see a doctor right away if you have symptoms of deep vein thrombosis or pulmonary embolism. Deep vein thrombosis can cause very serious complications if not treated.
Deep Vein Thrombosis
Only about half of the people with deep vein thrombosis have symptoms. The symptoms may include:
- Swollen area of the leg.
- Pain or tenderness in the leg. The pain is usually in one leg and may be felt only when standing or walking.
- Increased warmth in the area of the leg that is swollen or in pain.
- Red or discolored skin.
Pulmonary Embolism
Some people find out that they have deep vein thrombosis only after the clot has moved from the leg and traveled to the lung (pulmonary embolism). The symptoms may include:
- Chest pain when you take a deep breath
- Shortness of breath
If anyone has an experience or thoughts to share, please post a comment.
——————–
Related Post:
Uterine fibroid symptoms (not my idea of fun)
September 16, 2006 at 2:01 pm
My Gramms was on coumadin for years, and I felt like I was poisoning her with my own hand everytime I gave her the pills. I went online and checked for drug interactions and found that there were moderate to severe problems with coumadin and ALL FIVE of her other meds….We continued our leafy greens and in a short while her coumadin doseage came down from five mg. DAILY to between two and six mgs. A WEEK.
Things some things that thin your blood:
leafy vegetables (such as broccoli, cabbage, collard greens, kale, lettuce, and spinach) and some vegetable oils. Some fish oils, too.
K vitamin…Ensure, too.
: Mayhap you can speak with your Dr. and/or Dietary specialist (for lack of a better term) about DeCon and your aversion to it.
Once you are out of the woods, changes can be made. Meanwhile, chocolate also has bloodthinning properties I hear. ( a hug and a Hersheys Kiss go along way when I am down)
Take care.
O,
I am
TwoShoes
vvvvvvvvvvvvvvvv vvvvvvvvvvvvvvv
Talk to the Dr.
Talk to two!
Ask questions until you understand
Then do what is best for YOU.
September 17, 2006 at 2:14 am
I had a hysterectomy this week to remove a fibroid that caused a serious DVT. While in hospital, more than one of the nurses on the gynaecology ward asked me “Fibroids can cause DVT??” so I think it’s not all that common.
I would urge any women with sizeable fibroids (mine was around 14cm x 16cm x 6cm at its largest) to be aware of the symptoms of DVT. I had no idea and it was only when my leg was extremely swollen and I could hardly walk that I went to the ER. Fortunately, it turned out all right but it’s been a long 7 months of hospital stays, blood thinning and surgeries.
Before the DVT, my doctor and I were operating under the do nothing if the fibroid causes no problems policy. I highly doubt that any doctor would have predicted the DVT without seeing a CT scan, which doesn’t normally get ordered for fibroids (usually just an ultrasound).
The first couple stomach injections are the worst. After that, you’ll be fine
September 17, 2006 at 10:50 am
Sprkly,
Glad that everything went well for you with your surgery and the months of hospital stay, “decon” and stomach needles are over … Now onto the road to recovery !!!! dont forget that “laugh pillow”.. cause laugher is one of the best medicines… hummm that and a couple hersey kisses……
Let us know how your recovey goes…
September 18, 2006 at 12:17 am
Did a quick literature search using Google Scholar with the search phrase “deep vein thrombosis uterine leiomyoma” (without the quotes). Yes, it is rare but it does occur. Thanks to Ann-Marie for posting the original question. Definitely, learned something new with this one.
TwoShoes:
Thanks for talking about your experience with your Gramms. It’s great the two of you were able to lower her medication. Always good advice to ask questions and look for answers. Best wishes.
Sprkly:
I agree that knowing the symptoms is important. I’ve added them above and also added a link to this thread in the uterine fibroid symptom post. Thanks for sharing your DVT experience. I wish you well with your recovery.
fibroid free:
All this talk of chocolate… Where’s that link?… Ahh, yes… Godiva Chocolate… Ummm.
November 28, 2006 at 10:33 am
Hi there – did a search asking the question – how long does it take for a fibroid to die after UAE – found your site – what a help – I also had DVT and several clots traveled to my lungs – had PE – I have recovered from both by the use of coumadin – now on low dose aspirin – My doctors could not figure out how I developed the blood clots – they never thought of the possiblilty that my fibroid and the clots were connected – will mention to my doctors what I found at this site….I have more to share – will try to find the appropiate place to put my experinces……
November 30, 2006 at 5:30 pm
Hi MissLynne,
Glad you found us!
Thanks for sharing your DVT experience. I never would have associated it with fibroids if not for the comments left here. It makes sense if you have a fibroid pressing on vessels and disrupting blood flow, DVT could occur. Happy to hear you’ve recovered.
Don’t know if you’ve found the Forum but it’s a good place to start. Feel free to wander and post where you like.
February 23, 2007 at 6:45 pm
Hi all,
I was very aware of DVT and so worried that I was twirling my ankles as I was wheeled back to my hospital room and still groggy after my anaesthetic. Once home from the hospotal, I had a very sore left calf and it was really bothering me. I went to my GP and he ordered an ultrasound of all the major arteries in my leg. Fortunately, I did not have a DVT. He told me that if I did, I would need three months on Warfrin to disolve the clot. I had read that abdominal surgery can lead to DVT.
I think my calf pain was me being too diligent regarding my anti-clot exercises!! Sometimes there are only very minor symptoms for DVT, but it pays to be aware of them. I walked as soon as I could to get my blood moving-even before the nurses asked me to-it’s a good idea.
Sunday.
March 16, 2007 at 10:26 am
I had been suffering from what I thought were fibroids for 10 years. I had many ultrasounds and a CT scan that even gave the sizes of the fibroids. In 2006 I was
diagnosed with DVT and I am taking coumadin. In January 2007, I was given an
MRI to see if I was a candidate for uterine artery embolization. Guess what?
NO FIBROIDS were seen, instead I have adenomyosis, which is tissue growing into the muscle wall of the uterus. If anyone is having intense cramping, I would check
with a doctor to have a leg doppler for DVT and a MRI to further evaluate your condition.
May 18, 2007 at 10:57 am
Just wanted to say after being to many different doctors,
I have finally decided to have a hysterectomy by LAP.
I do have fibroids and adenomyosis and I currently take coumadin for my DVT that was diagnosed in Oct. ‘06.
They will test me first to see if there is any residual clot, if there is they will insert a filter before the hyst to catch it
if the clot should travel. I am keeping my only ovary for the hormones and my cervix, HOPEFULLY. I am scheduled for
June 28th. I am very nervous and will be more so as it gets closer. I still believe the condition of my uterus has caused this DVT but no doctor will agree with me, because my fibroids aren’t that big. I am hoping that they will see some proof of this during my surgery. If anyone has a similiar experience, I am anxious to hear about it.
July 15, 2007 at 11:56 pm
I am currently on warfarin for a DVT that I believe I got from being on high levels of birth control to help control bleeding from a fibroid that I have. I had a D&C to help with the bleeding but it did very little to help and the birth control didn’t help either. I was sceduled for surgery to have the fibroid removed when I got the DVT. Surgery is postponed for now unitl the DVT is taken care of. The fibroid takes up two thirds of my uterus so it is good sized, I have horrible bleeding, huge clots are passed, and cramps three of the four weeks of any given month. Since I started the warfarin, I have not had the bad bleeding. Does anyone know of any connection between blood thinners and the huge clots not being formed any more? I also have had three weeks of no bleeding which hasn’t happened for over six months.
July 16, 2007 at 9:31 pm
Tracey,
I haven’t had experience with DVT or warfarin, and I can’t tell how long you’ve been on warfarin and if you have had any bleeding yet… (and this is just an educated guess on my part): if you are bleeding at all, the warfarin won’t let you form large clots, and you probably won’t have horrible cramps because, at least in my case, they seemed to be caused when I was passing clots. Sometimes I would take asprin to thin my blood so I wouldn’t clot as much… not really sure if it helped or not, but I did it anyway! Anything to reduce to size of the clots and the pain… If you do start bleeding a lot again, I found out that Motrin cuts down on the bleeding! Wish I’d found that out before — I thought it was just took care of pain and inflamation!
August 3, 2007 at 5:40 am
I jusy spent 7 fun filled days in the hospital, due to pulamary embilism, which the doctors say also came from fibroid tumours but my regular doctor doesn’t think can happen, I too had to endue stomach shots. Anyway does anyone know for sure this is possible.?
August 12, 2007 at 2:50 pm
Hi there,
) crossed that my problem doesn’t come back but (unfortunatley) when we go for another baby I will have to have shots every day to be on the safe side.
No one thinks that DVT and fibroids have anything to do with one another but I can honestly say that they must do otherwise people wouldn’t end up in situations like this!
Within a week of being diagnosed with my fibroid I got DVT in both of my legs (something else that they said couldn’t happen but believe me it did!!).
I’m glad I raised this as a topic (way back last year) and I only hope that other people reading this can also spot the signs before risking pulminary embolisms!! I am now well on the other side of my abdominal myomectomy (Sept last year) and have had all the blood tests relating to DVT and it has proved that I have nothing in my genetic make up that carries the risk of DVT so it could only have been the mass.
I keep my fingers (but not legs
I will keep you all updated.
Glad this forum is still going – thanks to everyone for all of your support.
xx
September 15, 2007 at 1:10 pm
Interesting discussion. I’ve had large fibroids for about 5 years. Woke up last Saturday with PE and DVT – all doctors concluded based on the CT scan that one of my fibroids was pushing on the vein and caused the PE and DVT. Now I’m searching sites like this trying to figure out how soon I can have a hysterectomy to remove the cause of my DVT. They want me to wait 3 months but I want to get rid of the problem.
October 25, 2007 at 1:19 pm
I was just reviewing some of the research literature and found this from June 07. The association between DVT and large fibroids certainly seems to be more accepted than before.
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17694975&ordinalpos=52&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
BACKGROUND: Lower leg thombosis can occur in association with a large uterine leiomyoma. CASE: We report a case of extensive lower extremity thromboembolic disease secondary to large uterine myomas. The patient presented with sudden onset of lower extremity swelling in the absence of risk factors for thrombosis. Workup revealed extensive thrombosis involving iliac, femoral, popliteal, posterior tibial and peroneal veins secondary to vena caval compression by large uterine fibroids. Hysterectomy was performed after vena caval filter placement. CONCLUSION: In women with large uterine leiomyomas, the preoperative workup should include testing to rule out potential asymptomatic thrombi.
October 30, 2007 at 3:21 pm
I have two 7cm3 fibroids that we have been treating with watchful waiting for two years. I’ve spent 14 of the last 17 days hospitalized with blood clots in the left leg the inferior vena cava and the right kidney. The inferior vina cave and right kidney already had veins that had grown around the clots leading my diverse team of specialist to conclude that the clots has been there for a very long time. A vascular surgeon blasted the leg clot and the vena cava with some really strong medicine and left a pump in place for about 20 hours to deliver more medicine. The leg clot was broken up, however the scared vena cava was untouched. End of the day the specialist say that the cause of the clots are a genetic tendency to clot. I still wonder why now at age 39 and not years ago do I get these serious clots. Also could the pressure in the pelvis from the fibroids contribute to these clots? My husband and I are somewhat concerned that a recent vaginal discharge of a “jelly fish” was a miscarriage but blood tests cannot confirm this. I have never knowingly been pregnant nor do I take birth control pills or smoke. I am moderately active and now am taking Warfarin and wearing support stockings for life. I’d like to look closely at how a hysterectomy would improve my health. Beth, were did idea that you’d have to wait three months come from?
November 22, 2007 at 11:42 am
I talked to the doctor about getting more serious about my fibroids. He said that he would not recommend a myomectomy for at least a year as I would have to be immobile for about a week and in the OR for an hour or so. I run the risk of clotting causing my clots. Beth are you out there?
December 23, 2007 at 11:55 am
I was just discharged last week after an 8 day vacation at Hotel del York Hospital. I had DVT that ran from my thigh to my ankle and from the MRI the numerous doctors on my case had determined that my very large fibroid had placed so much pressure on my illiac vein that it caused the clot. Apparently it is rare, but, they could see the evidence right on the film and there was no other reason for a blood clot. While in the hospital, I had an uterine fibroid embolization to attempt to reduce the size of the uterus in so that further clotting could be avoided. All in all, the doctors had been very open minded and I believe they treated me with all the resources available to them. Thank you for this discussion board as it has helped to validate my experience!
January 12, 2008 at 6:08 pm
Does anyone know of the least invasive way to remove uterine fibroids while on warafin?
Was hospitalized for 8 days after finding I have DVT and PE. Only risk factor they said was birth control pills. Now I see it could be the fibroids. I have 3 fibroid tumors that we’ve known about for about 2 years. No one seemed to connect the two problems. They prescribed warafin for the next 6 months but need to do something about my heavy menstrual bleeding but cannot have surgery until I am off the warafin. I was also anemic.
March 14, 2008 at 7:56 pm
Apple, my gynecologist has prescribed a Merina IUD. It is loaded with a tiny dose of progesterone which will eventually shrink the endometrial tissue and reduce this non-stop bleeding. The fibroids will stay in tact, but eventually I might stop bleeding all together. So far he has taken a biopsy of the tissue and started things in motion with the insurance company who must pre-approve the IUD. My hematologist chided in that the progesterone might elevate my libido, adding that very little progesterone will exit the uterus.
March 15, 2008 at 1:30 pm
Apple,
Hope you read this.
I was on warfarin until 2 days before my op to remove my fibroid then went on injections of heparin before my op and then for 2 days after my op and then I went back on the old rat poison for another 6 months. I think they just weigh up how much you need the op as they would prefer to operate with no additional risk.
Hope you are OK
Ann-Marie
June 1, 2008 at 7:23 am
I had a hysterectomy on March 12, 2008, because I had a cyst on my left ovary. When I went to my 6 weeks checkup. The doctor pressed down on my abdomen, I almost jumped off the table. It hurted bad. I had a ct scan. It showed I had a 1.7 cm diameter cystic in the right lower pelvis (Thrombosis of the right ovarian vein). On May 6, 2008, I was admitted in the hospital. I was on Heparin for about 3 days, at the same time they started giving me Coumadin. I was released from the hospital on May 13, 2008. I was in the hospital on Mother’s Day, I was depressed. Now I’m on Warfarin, I have to go see the doctor twice a week. It doesn’t make sense, I had the surgery because I was having pain (from the cyst). Now that I had the surgery I’m still having pain. I am so glad I can talk to someone about what I going through. My sister is a RN, she had a hysterectomy a couple years ago, she’s fine. She doesn’t know how I feel. Now I have to take a blood test to see why did I get a blood clot. Thank you so much for your help. I pray you all get better soon.
June 24, 2008 at 2:08 pm
Hi, so glad I came across this page. Five years ago I had a full leg DVT, managed to get an appointment at the doctors , I was sent to hospital where they carried out tests. During the previous night I was disturbed with very bad period pains, something which I hadn’t suffered for years ( I was 53 at the time) it was what I used to suffer when a teenager. I told all the doctors I came in contact with in this time as I felt it was connected with the DVT. Heperin and Warfrin were given. After a few days I had an ultra-sound, I asked what had she found and she said that ” I had a large mass of fribroids in the overies, sometimes they expand, this had caused the DVT “, obviously they were pressing on an important vien. One large fibroid was 10cm the other 3 cm. 6 months later I had a total hysterectomy which has been a bit of a roller coster as when both overies are removed its a nightmare. I wish I had asked for at least one overy to be kept , if possible, as it wouldnt have been so bad maybe. After the op a doctor said that the fibroids had not caused the DVT which I was gob-smacked. I firmly believe that they were to blame for the DVT. I have not suffered another DVT since, also I am not on any medication for clots.
July 16, 2008 at 3:09 pm
Wow! I’ve been trying to figure out why I developed a pulmonary embolism after having my appendix removed in February. Nobody ever asked me about uterine fibroids, which I’ve had for several years, causing heavy bleeding, severe pain and anemia. I had uterine ablation done in September but they were unable to remove the fibroid because most of it is in the lining of my uterus.
Now I don’t have the bleeding problem but I still get really bad cramping, plus digestive problems because the fibroid presses against my intestines/bowel.
It makes total sense that it was also pressing on veins, which may have caused the fibroid.
My doctor has suggested hysterectomy, but I”m hesitant because both breast cancer and heart disease run in my family. I’m also hesitant to take hormones for the same reason. Don’t know what to do other than hope that menopause will shrink it. Any advice?
July 19, 2008 at 1:36 pm
Dear Mary, obviously I’m not medically trained but if your doctor has suggested a hysterectomy perhaps that the answer but do ask the doctors to save at least one overy as this is very important for both conditions you have mentioned. I found the hysterectomy a breeze but the after effects of having no overies is another matter. Hope this helps.
July 30, 2008 at 12:59 pm
At the end of June, 06 I had to drive for 8 hours straight on business and that evening noticed my legs were swollen. After a couple days they didn’t get better so I called a doctor who couldn’t see me for 1 week. She ordered a blood test and ultrasound and said she found a huge fibroid. Within a couple days my left leg swelled up like a balloon and I got scared. I went to see an oncologist and she put me in a wheelchair, told me not to walk, and admitted me into the hospital because of the DVT. The next day they implanted a filter to catch any blood clots before they could go into the lungs. The day after that I had a hysterectomy, leaving one ovary. I was in the hospital for 9 days. I did get the stomach shots but only felt the very last one because my doctor did great pain management. I’ve been on 7 mg of Warfarin ever since. Nobody could tell me what will happen with this filter after 10 years! I was only 41 at the time and they told me that typically senior citizens get the filter and they do fine for about 10 years. What happens after that???? Anyway, just had an ultrasound and they found two tiny cysts on the remaining ovary. Now I wish they had just removed it too. Monday I’m seeing a specialist to find out more.
Don’t wait to let the fibroid get so big to cause problems! Also, when they are smaller they can be removed with a laser and minimally invasive surgery to avoid hysterectomy.
I don’t wear the recommended stalkings–but I do make sure to put my feet up as much as possible, even at work, and try to go for a walk 3 times a day to get the fluid circulating. So far, so good. Oh, and NEVER SMOKE. This greatly exacerbates the problem. Good luck all and hang in there! Really grateful for this forum.
August 3, 2008 at 11:08 am
I did not follow up on the IUD because my watchful waiting turned into sever pain.
May 5 my husband drove me 200 miles to the urban hospital where I had been treated for DVT last October. We thought I was having a pulmonary embolism. I had shortness of breath an pain in every part of my abdominal trunk. I was given a bed right away. ( I think because I was dry heaving into a plastic tub I’d brought along.) CT scans and blood tests did not show anything, and I went home nine hours later with the diagnosis of viral infection and constipation. They gave me a script for Oxycontin and something for nausea.
June 4 the same exact symptoms presented. I tried to treat it at home. On blood thinners, the only pain killer I could use without a prescription is acetaminophen, and the pain was intense. Eventually I drove myself to the local rural emergency room. They felt my abdomen and came to the conclusion that I needed a hysterectomy. By ambulance I arrived back at the urban ER. Admitted to the hospital I started a series of blood draws, imaging tests and a colonoscopy. My enema was so extreme that I needed a blood transfusion, though my menstration was practically nothing. As always my GYN refused a hysterectomy because of my tendency to clot and my blood thinners. Unfortunately, I developed a temperature in the hospital and had to stay until it diminished. I was in the hospital a total of nine days which in hindsight was a huge waste of my time and their medical resources.
July 10 was the first procedure other than a test to solve the problem. After a office visit with the GYN we came to the conclusion that a UAE would be a preferred procedure because so little cutting is involved. I went off coumadin for three days. The procedure was fast, but I stayed 23 hours in the hospital for observation and pain management. I felt fairly normal after three days as the interventionist gave us an excellent schedule with medications to manage swelling, pain and potential infection. The pain is like a bruised muscle deep inside. Ten days later I had no symptoms.
I haven’t had a period yet, so I don’t know if my bleeding and cramping will be intense. The interventionist said that it might take some time for the monthly pain to normalize. In three months, I go back for a second MRI and the fibroids will be measured again to assess shrinkage. If they haven’t, the GYN will be amenable to surgery, but I’m confident that the UAE is going to work.
August 5, 2008 at 1:25 am
The more I hear about the results of “watchful waiting” the madder I get! Maybe it works for a lot of women, but for those it doesn’t work for, it often sounds like hell and very scary! I can’t but continue to be shocked that the medical profession doesn’t know more about these damn growths, the problems they can cause, and how prevent them or at least properly treat them or even remove them without ever removing everything around them. Auurgh!
August 10, 2008 at 1:00 pm
Amy, the UAE is about as close as you can come to treating the fibroids without removing other tissue surrounding them. In hindsight I wish I’d had an UAE the moment i was diagnosed with fibroids. At the time they weren’t causing any symptoms other than heavy bleeding and constipation, both of which I could manage if I stayed on top of them. I do not know if the DVT can be linked to the fibroids at all. The vascular surgeon says not as does my GYN. I’m paying close attention to the edema in the left leg as these unwanted visitors shrink.
August 12, 2008 at 12:20 am
Dawn, I’m curious to know how you do…especially as I haven’t decided what to do about my fiboids… You sure have been through a rough time. It is interesting that so few docs seem to recognize that there may be a relationship between dvt and fibroids… or at least fibroids in certain locations (I’ll bet that is where they need to focus)…it just seems to make sense to me. Given the blood thinners, you really didn’t have much of a choice for dealing with your fibroids … but you say you’d wished you’d had the UAE when you first found out..did you ever consider removing them at all prior to the DVT? And if so, did you consider other procedures? I’m curious to know if you had it to do over and actually had had a choice, would you still chose the UAE? I don’t fully understand what happens to the fibroids with UAE… I understand the procedure, just not what actually happens afterwards… so it makes me uneasy… so I’m starting to wonder about laparoscopic myomecotomy since I can’t take much time off of work…
August 14, 2008 at 2:53 pm
I am so glad I can across this blog. I was just released from the hospital after about a week. I had been having shortness of breath, chest and back pain (that I thought was integestion (sp)),feet and ankle swelling, and what felt like intense heart pounding. I finally went through emergency when I tried to make a salad and didn’t have the energy to do so. The doctors told me that it was a good thing that I came in because they found blood clots in my left lung and a bit of pneumonia. I was also found to have low blood, dehydration and low iron in my blood. Looking back, I had been on my period a few days prior and the fibroids I have always get bigger around that time and I can feel them pressing on my other organs ( I have to go to the bathroom more often). I too was told to leave them alone until they started to bother me. They have not until two months ago…. my periods have come a week earlier and I’ve started to bleed a bit more……..Well back to the hospital stay………I think I was given every test know to man to figure out 1) why and where the clots were forming 2) why I was my blood was so low. My doctors were puzzled because my lifestyle didn’t predict that this sort of thing should happen me. I have never been a smoker, I never touch alcohol, I don’t do drugs, I’m not on birth control, I don’t have heart problems or high blood pressure. Besides being a little bit overweight ( but in America, who isn’t) and a previously healthy 43 year old I was a bit puzzled myself. I was put on oxygen and given heparin, 2 pints of blood, iron pills, antibiotics and 20 mg of coumadin while in the hospital. Needless to say I started to get much better and the doctors released me after about a week. I now take 10 mg of coumadin once a day and give myself a shot of 80g of lovenox twice a day. I’m scheduled to see my primary care physican next week for a follow up appointment and also a GYN. I feeling better, still not my old self yet, but by Jesus’ stripes I am healed. I will let everyone know how things are progressing along.
August 15, 2008 at 10:09 am
Angela, you have been through quite an ordeal! Some of these things just seem to come out of the blue with no explaination. Thank goodness you got good medical care and came through it well! Be patient and kind with yourself now to give your body time to heal.
Brandy
August 23, 2008 at 5:11 pm
Amy, I had put serious thought to a myomecotomy, but at that point I thought that it was either this or a hysterectomy. I think my rational for watchful waiting was rather cowardly in hind sight. I just didn’t want to devote the time needed to undergo a medical procedure, and beside I could control the adverse effects of heavy bleeding and constipation. Web research relieved the UAE which seemed ultimately more efficient than the other measures, for wouldn’t effect hormonal production in the uterus, and I wouldn’t have to argue with the doctor about keeping my cervix and ovaries. About a year into watchful waiting I was diagnosed with a clotting disorder after as I was in the hospital for a DVT. Like Angela said, “I was given every test know to man to figure out 1) why and where the clots were forming 2) why I was my blood was so low. My doctors were puzzled because my lifestyle didn’t predict that this sort of thing should happen me. I have never been a smoker, I never touch alcohol, I don’t do drugs, I’m not on birth control, I don’t have heart problems or high blood pressure.” I am on 25mg of coumadin per week now to prevent blood clots. I am currently on day 14 of my first menstrual flow following the UAE which I consider too long. At least I am only using one Kotex per day with no tampon, which for me is as light and my teenage years. I will find out if the unwanted aliens living in my uterus have shrunk in October, three months following the intervention. Amy, does this help?
August 24, 2008 at 11:29 am
Hi Dawn,
I’m sorry to hear you’re still bleeding! It does seem however, that sometimes it takes our uterus some time to get back into the normal flow of things (no pun intended!) After all, we are doing strange things to our bodies.
Thanks for giving more of an explanation…though I’m still left with the question: what procedure would you choose today – knowing what you know now?
I’m also wondering if the doctors say you will have to be on coumadin forever? That would be a shame if the fibroids really are the cause and the docs are wrong….. I’d bet definitively documenting the relationship btwn. fibroids and DVT, if there is one, would change a lot of our choices when it comes to dealing with these darned growths!.
August 28, 2008 at 8:26 pm
Amy, with or without a clotting disorder, I would choose the UAE. The procedure, even if it is a failure, will be a step in the right direction should I need surgery. I really think this thing is working though. I needed my bleeding to reduce and the monthly pain to cease. So fare, so good. My usual 26 day period was only 14 days this month, and was light. The aliens are shrinking and getting absorbed by my body. I also know this because my waist measured 35″ the week before the UAE and measures 34″ today.
If you can afford to take the days off from work should you need to recover from the UAE followed by a hyster a or a myomecomy a few months later, I would take the steps to put the UAE into action.
Amy, be able to tell your GYN exactly what you need and the time line that is acceptable to you, then, implement your plan. Your body and health is work this tenacity.
August 29, 2008 at 10:31 am
Thanks Dawn, interesting, and I never thought of doing UAE in preparation for a second procedure! More to consider! Nice your belly is going down! I would love that! So, are they really reabsorbed or do they just shrink? Thanks and best to you!
September 3, 2008 at 3:21 pm
Hi all! I have not posted in awhile. Just want to let you know that I believe totally that my DVTs were caused by the condition and contracting of my uterus. My uterus, after removal, was found to have fibroids, adenomyosis, enlarged veins, and very inflamed. Before my op and for sometime after I was on coumadin for a DVT. I know the DVT has been gone for quite sometime and the drs felt I needed to be on coumadin for the rest of my life. When I would have my blood checked by the hematologist for anticardiolipins pre my op they would be high. I read up on adenomyosis and found that it could elevate anticardiolipins. After my op I had my blood checked again and the anticardiolipins were normal. So against the drs advice I have been coumadin free for 8 months now. I take a baby aspirin everyday and I feel GREAT!! It has been a long road and I just want everyone to know there is a light at the end of the tunnel. We know our own bodies, doctors are not always right. Good luck to all of you!
September 3, 2008 at 10:54 pm
The newly-published 2008 clinical guidelines for physicians from the American College of Chest Physicians (ACCP) on how to treat DVT and other forms of venous thromboembolic disease are available as a domplimentary download at http://www.thenewguidelines.org
September 8, 2008 at 12:23 am
As others have commented: this site and topic is appreciated.
I am 47 years old and have a few fibroids which represent the size of a 16 week pregnancy. Other than the size (and it being very apparent visually, when touching my stomach, and during intercourse), and a very heavy flow the first day of my period – I had no other symptoms. We were monitoring the size to determine change and I also started taking black strap molasis on a daily basis. (I was hoping I could get to menopause with no surgery and they would shrink on their own.)
Unfortunately that strategy started to change when in January my husband, daughter and I were shopping in Costco and I fainted (syncope). An ambulance was called. After EMS examined me, I chose to ‘walk’ out and go to the emergency room on my own. After walking 10 feet I fainted again. We got to the hospital via ambulance where I fainted a 3rd time.
They rushed me to a CT scan where they found massive blood clots (yes many and LARGE) in both lungs (as well as clots in my left leg). It was an emergency situation and we made the decision to take a drug referred to as TPA or ‘clot buster’, instead of surgery. Fortunately it was very successful and the situation was no longer life threatening.
Of course it was the first day of my period, so the bleeding was massive. That combined with the blood thinners I was getting – I had to have a blood transfusion.
My immediate thought at the time was that it was the fibroids that caused the problem. The doctors understandably at the time disagreed since I had had a broken leg 5 months earlier and had flown on a 5 hour plane trip 6 weeks prior to the syncope (both issues are classic text book causes of clots). I went on blood thinners for 6 months and got a clean bill of health (all clots gone) and went off the warfarin.
Four weeks later (2 weeks ago), I felt shortness of breadth and played it safe and went to the emergency room. Sure enough clots in the lungs and leg again. Fortunately it was not as severe this time – so no TPA. But now they are talking warfarin the rest of my life. Again my thought – the fibroids.
Since I had two PEs (pulmonary embolism – clots in lungs) within 8 months we are very concerned. So far tests indicate no hereditary issues. So why the clots?
Apparently clots that occur for no apparent reason can also be symptoms of early stages of cancer — your body is fighting the bad cells and you clot. I am now getting every test under the sun to rule out any cancer in my body.
In the meantime, my GYN and I are discussing the fibroids. Most doctors are saying ‘no, can’t be’. Fortunately my doctor is very open minded and thinks they could be the problem as well. I seem to have lucked out, in that my GYN has had 4 women patients with abnormal fibroids that progessed into problems – you know that 1% statistic we all hear about. Most GYNs have 0 – 1 patient in their careers with issues; he has had 4.
I’m meeting with my GYN next week with my CT scans (since I suspected the fibroids, I insisted during both my PE visits in the hospital that they scan my pelvic area and fibroids as well – fortunately they did not grow at all between January and August) and we are going to discuss our next steps.
I am very happy to find this web site – now I know this is very feasible and I am not crazy.
While this has been a very long contribution, I wanted to provide my background, so I can continue to share my experiences over the upcoming months. I am VERY lucky that after 2 PEs I have not damaged my lungs or heart, and I am very healthy (over weight – but healthy). The most frustrating aspect of this has been the inability to find anyone else that has had the same experience.
Hopefully as I continue down the path to resolve my issues my experiences can help someone else going through this …
In the meantime – if you have large fibroids make sure you are VERY familiar with the symptoms of an embolism (clot) – they are very elusive and easy to ignore (http://www.apsfa.org/pesymptoms.htm ).
Thank you all again, and I’ll keep you posted.
P.S. – I promise to keep it short next time!
September 8, 2008 at 12:01 pm
HiHave had the DVT too! I had been rescheduling my surgery for almost a year. 3 days before admission, my left leg started swelling, thought it was a cramp so didn’t go to hospital coz was going to go anyway.So on admission, my doctor called a heamatologist, and to cut the long story short, stayed in hospital for a month, to clear the clot. Otherwise, going for the UFE in the next 2 weeks. Lets stay strong, believing that God is takin care of us.
September 20, 2008 at 12:12 pm
Just an update: My menstruation duration for period #1 after the UAE was 14 days. Month #2 was only 8 days, with one day of sever cramps. Since the procedure I have reduced the coumadin dosage to 25mg per week. Something grayish and purple come out with the flow and it wasn’t a blood clot. Anyone have any ideas of what it was? As Amy and Terry suggested I wanted to be tested for anticardiolipins to see if my blood was still sticky. My hematologist doesn’t want to order this test saying it is highly unlikely anything has changed. I can still ask the radiology interventionist or my GYN if she or he would order the test.
September 20, 2008 at 12:28 pm
Kristin and all others who are working through these seemingly unconnected conditions DVT and uterine fibroids: Keep your spirits up. These are conditions that actually have resolutions and each month you’ll feel just a little bit better. Eventually you’ll feel vivacious and participate in your life without budgeting how many tampons and maxipads you’ll need to use that day. You’ll sleep better without the need for two pillows under your legs at night.
September 21, 2008 at 9:56 am
Hi Dawn,
I’ve never been on coumadin, but those I know who take it are regularly tested to check their clotting factor. I would suggest getting one of your other doctors to order the test so that your dosage can be adjusted if necessary and also just to confirm that everything is tickety-boo.
As for the grayish-purple, I would suggest it might be what other UFE’ers describe as “chicken guts.” Some of the fibroid may be sloughing.
September 21, 2008 at 11:59 am
The problem is that pressure on the underside of thighs from the seat pan and the edge of the seat pan presses against the thighs, which reduces back flow of blood. If you’re wearing socks it’s not enough; only redistributing pressure can help.
September 30, 2008 at 12:48 am
Aja, thanks for the shot in the dark for what the “chicken guts” might be. Let’s hope you’re right.
All, Should I understand what John S. is talking about here?
September 30, 2008 at 3:12 pm
Hi, Glad to have found this site, lots of ppl with similar issues to share and guide eachother.
I had severe cramps with adenomyosis always and then developed superficial thrombosis. Doc assured that I would not get DVT.One fine day got PE and realised DVT. Was on clot busters and recovered. On blood thinners ever since. Struggled with bleeding and cramps issues after this since blood thinners agravated it all. Tried Merina loop. After few months it showed no effect. Then ended up being anemic due to blood loss and one fine day with in 6 months after 1st PE , i realised that I was having another milder PE attack and also got a Pulmonary Hypertension. Filter was inserted. Finally opted for Hysterectomy, ovary was saved. Thouhgt things are settled for good, but after another 6 mnths, cramps kept increasing and detected ovarian cyst, mass of 7 by 8 cm size. Currently struggling with monthly right abdomen and back cramps for 2weeks of the cycle.. hoping and praying that the cyst will subside, so that the surgery can be avoided.
I worry about – what next? will it resolve, will i have to go under the knife, what if ovaary is removed, wont that cause clotting issues?
September 30, 2008 at 3:14 pm
BTW my age is 32, episods of DVT etc happened while I was 31.
September 30, 2008 at 6:27 pm
Just wanted to share my update…I’ve been undergoing many tests for various forms of cancer to rule out that the PEs aren’t being caused by undetected cancer anywhere in my body (so far all have come back negative).
I went to a Gynecological oncology surgeon at the recommendation of my gynecologist. After discussing my situation, and my very strong intuition that the fibroid was causing my PEs, he shared his opinion that although my fibroid was a 20 week pregnancy equivalent, it was very ‘mobile’ and he doubted it was causing the PE.
He then recommended an MVT (Magnetic Resonance Venogram). He felt this would determine if the fibroid was putting pressure on any arteries and thus causing the PEs.
I got the call this morning with the results — The fibroids were applying pressure to my arteries and could definitely be causing the clotting – especially if I have a tendency to clot. In fact I now have to go in for a sonogram, since the blood flow in my femoral artery is extremely slow, and I may indeed have a clot in the artery now. Fortunately I am already on blood thinners due to the PE last month so there is no immediate danger.
I will now proceed with plans for a uterine fibroid embolization to shrink the fibroids and remove the pressure — hopefully minimizing any future risk of a PE.
Thanks to all – having a place to go to discuss these issues (and more importantly become educated) has helped! Good luck!
October 1, 2008 at 1:58 pm
I’ve been on warfarin for almost two months now. I still worry about my health, although I feel better, I still am not my old self since the PE. I don’t know if I’m having side effects from the medicine or because a clot has traveled to my lung, I now have a dry cough and I feel twinges (if that’s an actual word) in my chest area and sometimes I feel as though I can’t catch my breath. I have a list of complaints I come to the doctor with now because I have become a complete worry wart when it comes to my health. I notice every ping and pain I have in my body now. My doctor thinks it could be from the medicine or my nerves. I’ve taken two EKG’s in the past month, which turned out to be normal, my blood pressure is fine and my doctor says that my lungs sound clear. My INR’s are unstable, though, so my medicine is being adjusted often. I will be glad when I can one day put all of this behind me.
November 8, 2008 at 12:43 pm
Just an update: October’s period was 7 days and November’s I think occurred in the middle of the night, for just a few hours. Odd. I am on guard for a tsunami of coumadin rich flow of blood, but have none of the swelling or spotting that would foreshadow this.
October also brought an other DVT followed by all the tests in the book for cancer and two nights of hospitalization. (I am scared because I have started to know the nurses and tech’s at my preferred hospital. It’s so odd to catch up with the overnight staff.) I’ve asked so many health professionals about the connection of DVT and fibroid. My intervention radiologist asked if the clot in teh vein was all the way to the uterus, and it wasn’t. She explained that if the fibroids were causing the problem the clot would be all the way into my pelvis. That puts the cause and effect relationship to rest for me. I don’t think that the fibroid and the tendency to clot create the conditions that causes the DVT. I think that the tendency to clot operates alone.
Happily, the newest MRI tells us that the fibroids are DEAD and shrunk 20% in three months.
December 1, 2008 at 2:40 pm
Found Geek’s blog back in Aug/Sep 08. First commented in “How are you doing after your abdominal hystorectomy.” Surgery date is Dec 15, 08. Have decided to have overies out due to overian cyst. Information on DVT is good to know before the surgery.
TwoShoes Sept 16, 06 your comment on vitamin K helping to thin blood may be inaccurate. Vitamin K is used to help blood clot. This is one of those memories from childhood in school learning about the Russion royalty’s blood disease that prevented their blood from clotting. It was discovered that by giving those aflicted by the disease vitamin k their blood clotted.
All the dark green leafy vegetables are a good source of non-heme iron (vit c helps it be absorbed better) which will help build red blood cells and stop the anemia.
Reading the entries makes a connection between blood loss, anemia, and blood clots. The fibroids are increasing the body’s blood loss, anemia occures. To build up red blood cells we take iron. For me I was consuming lots of leafy green items and alfalfa tablets (high in iron and vit K). I noticed a significant increase in blood clots during my 4 week mensus. I stopped taking the alfalfa and many of the other leafy items (developed a hypothyroid problem during this time, another subjuct I would like to discuss and find out if other have had this occur) and found a iron gluconate tablet, Fergon, to help with blood building.
How is this related to the DVT? One cannot have real thin blood when going into surgery or there is the possibility of bleeding to death. To thick blood could possibly promote blood clots. Not enough red blood cells (anemia) and oxygen does not get to where it need to go. I do not know if thin blood is the same as anemia.
Besides having fibroids, I was informed that the prolonged mensus was due to the uterine muscle lining(?) acting as a sponge in absorbing blood flow and not properly constricting to expell the aborbed blood. This is my third cycle like this and seems to be going into a fifth week. During these last 4 weeks the blood clots have not been as several and I have not had the vitamin k.
I have my preop Dec 3rd when I will ask about DVT possibilities to my gyn/surgen.
My sister had a total hystorectomy May 08 due to enterin-uterin cancer. She went to the hospital last week due to a blood clot in her leg and was put on a blood thinner. This is six months after her surgery.
December 1, 2008 at 3:06 pm
My appologies to all. Was reading google sites to become better informed about DVT’s. Typed in How do blood clots form There were several techinical ones along with the adverts. Go read. It is better to get it first hand.
February 8, 2009 at 5:45 pm
I started this blog January 12, 2008 and hadn’t logged back in until now and was shocked to see all the conversations. When no one replied for a few months, I figured I must be alone. It’s been 13 months since my PE & DVT. I was on 10 mg coumadin daily until May 23, 2008 when I planned to have the fibroids sugically removed vaginally. About a week prior to my hysterectomy, my hematologist took me off the coumadin. The equipment started malfunctioning during surgery so I ended up with a vaginal hysterectomy. While in the hospital for the hysterectomy was injected with lovanox. Hematologist has me on one baby aspirin daily for rest of my life. Just wanted to let all of you know how things worked out for me. The hysterectomy was the best thing that could have happened. I feel healthy and look healthy. No more anemia, no more bleeding. I am hopeful for no more DVTs or PEs. I firmly believe that mine was caused by the fibroids or possibly the progestin I took one month before diagnosis of the DVT to postpone my period by one week due to my vacation. If I could have changed things, I would have stopped birth control pills a long time ago. My old obgyn said the fibroids were caused by the birth control pills. I was 40 when this all happened. I think God that he carried me through this and pray that all of you are also healed.
February 16, 2009 at 10:11 am
I was hospitalized for 3 wks with DVT. My fibroids are 7.9 and 5.4 cm. The doctors say I cant remove the fibroids right now because I am on Warfarin 10mg. I am afraid of doing the myomectomy because I am 30 yrs old and do not have any children as yet
February 19, 2009 at 8:23 pm
Cassie, why not UAE? You’d be up and moving much sooner and you’d still be able to have children. Your DVT makes me think that laying in bed could be very dangerous to you. The myomectomy might scar the wall of the uterus which might make it difficult to stay pregnant. Have you talked to your doctors about this?
March 21, 2009 at 6:18 pm
My latest MRI imaging shows my almost normal sized uterus neatly tucked into the pelvis and 9 months after the UAE the uterus is 40% smaller. All fibroids are dead except two rather small ones. I asked if those aliens are growing and the intervention radiologist explained that that it is like a teeter toter. as the others shrink, these two might grow, but the many shrinking fibroids ontinue to shrink faster than the live ones grow, so the whole system is shrinking. The pain is nearly gone. The periods are about 3-7 days. Yucky still, but not nearly as yucky.
July 3, 2009 at 10:25 am
I have had trouble with heavy periods since Feb09 when a gynae Dr confirmed I had 3 small fibroids. I had an ultrasound in Apr09 when the sonographer said they were bigger than had been previously mentioned, approx 9cm x 8cm. Within the space of 3 weeks, I could cup my hand over an area of my stomach where the fibroids were and after eating a meal, I would have to go to bed because the pain was so bad. One night in work, I passed a clot as big as my hand and went to the hospital, where a blood test showed my iron levels had dropped to 6.8. I received a blood transfusion and was let out of hospital the next day. 4 days later I had a bad pain in my leg which my GP told me was my muscles cramping from the anaemia. 3 days later when the pain had not subsided, I went to A&E where a D-Dimer test and scan revealed I had a DVT. I received Heparin injections for nearly 2 weeks and was given Warfarin. I did not fit the ideal for someone to get a DVT. Non smoker/drinker, fit and active, slim and under 40 yrs. Finally a Haematologist advised me that the DVT had been caused by the fibroids and accumulating uterine clot pressing against arteries after I had eaten. Hopefully I will have a hysterectomy within the next few weeks and on the Warfarin for another 3 months at the most. Hope other people suffering find this useful
August 4, 2009 at 12:44 pm
Hi, My daughter who’s 34 with no children just had a hysterectomy (both ovaries remain). She had a fibroid the size of a 7 month baby and also had a PE and DVT 3months ago. After another DVT with very swollen leg occured several weeks ago the gynecologist/oncologist was called in and concerned the fibroid was actually a cancerous tumor and wanted to do the hysterectomy immediately. She was already on coumadin at the time so was bridged off and put on shots and a filter was inserted to prevent clots from moving. Surgery went well. No cancer. Uterus and large fibroid removed. She is doing well but has been advised to stay on lifetime coumadin even though testing after 1st clotting episode in early May showed no abnormalites that would cause clotting issues were present. Some of her doctors seemed to be willing to say the fibroids could cause the clotting and some seemed unwilling to consider it. I’m not sure if we’ll ever know if the clotting issues are resolved unless she takes herself off the coumadin. She also had no known risk factors for clots although she did have a sudden heart attack from a spontaneous dissection in an artery about a year ago. I’m wondering if the heart attack may also have been caused by a clot caused by the large fibroid. So many questions….
August 4, 2009 at 1:49 pm
Nancy, I am sorry I have to be brief, but here is my two cents worth. Look at a diagram of the venus system and you will see the veins and arteries placed in an upside down y just above the belly button. It would take a huge boulder sized fibroid to pinch them enough to clot. I don’t think the fibroids can cause a clot. The fibroids and the coumadin will definitely cause heavy bleeding. Does she also see a cardiologist?
August 4, 2009 at 4:13 pm
I previously wrote in regarding my fibroids and subsequent DVT. My Gynae Dr said he didn’t think the fibroids had been caused by the fibroids, which goes against what the haematologist said. He said the DVT would’ve been up in the thigh area had it been the case and not in my calf. However, a week ago I spoke to someone in work who had had a DVT in her arm when she was 14 and they put the cause down to air bubbles in an injection she had in her arm a few days before the DVT. I then remembered that while I was having a blood transfusion 5 days before the DVT, a nurse was flushing the line out with saline. I commented to her about the air bubbles in the syringe and she said as they were only small bubbles it wouldn’t matter. Now I’m beginning to wonder. I will be asking my haematologist if this could be the cause of my DVT. Seems a bit of a coincidence. Will let you’s know
August 6, 2009 at 4:43 pm
Yes, She does see a cardiologist. Hopefully the blood clotting issue is under control with the coumadin she is on. The fibroid is gone and so is her uterus and chances for children but I’m just thanking God that she is alive through after at least 2 episodes of DVT and PE. Thanks for the comments and concerns.
September 19, 2009 at 9:47 pm
Hi Everybody! YAY!!!
FYI — I contacted WordPress and they were able to fix the blog!!! Still no sign of Eclectic Geek herself, but at least most things seem to work.
I’ve asked if it was an actual malfunction or the domain mapping wasn’t paid up or whatever…. and will continue to follow through on this is just in case.
I really hope the whole thing is working again and all the regulars come back!
(for those who get ALL the comments emailed to them, sorry for all the repeat posts, but I want the message to get through to everyone!)
September 20, 2009 at 4:49 pm
Amy thank you for putting in the hours it must have taken to get the blog fixed. It is quite odd that the Eclectic Geek herself seems to evaporated. I hope all is well with you.
September 20, 2009 at 10:19 pm
Dawn, you’re welcome – I just hated to see this end! And I just keep wondering what in the world happened to EG… I emailed her personally, searched for her on the net, she even had another blog – it too ended… if you look at her most recent entries in the beginning of ‘07, you’ll see she had a lot more plans for improving this site…. I guess it will remain a mystery. But I can’t help but think she would have wanted this blog to continue….