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Blood clot in pelvis
Started by Wiffle
Posted: January 11, 2011 at 03:20
Has anyone had this?? I have a clot in the illiac vein extending into the vena cava discovered via CT scan for an unrelated issue a few weeks ago. I was on lovenox shots and now just warfarin. I'm going to a hematologist in a couple weeks but so far all the doctors I've talked to rarely heard of this?? It would be nice to know I'm not the only one with this :( I also have factor v leiden, heterogygeous. (I just had a baby 6 weeks ago so the ER doctor said this was most likely the cause of the clot)
Also, last night and today I started having pain in my left abdomen/ hip area. Has anyone had this? It's very bothersome and I am using a heating pad all day today. I talked with a nurse who thought it could be residual from the clot healing but who knows??
Trying to get out of this "woe-is-me" attitude...
19666
Re: Blood clot in pelvis
Reply #1 by Naomi
Posted: January 25, 2011 at 21:48
Hi Wiffle,

I had most recently a clot starting in my right thigh and it went up into my groin via the Femoral and External Illiac. It went down to just behind my knee and was found to be mostly occlusive in all superficial veins, popliteal, femoral, illiac, etc. Basically in every vein and artery they could find.

It's annoying and there's nothing you can really do for the pain in your groin. I hadn't thought of a heating pad but that's a good idea. I usually just softly rub it forcing the blood through and I find that helps a bit.
19902
Re: Blood clot in pelvis
Reply #2 by Essie
Posted: January 25, 2011 at 22:13
Hi Wiffle

My clot was extended from my ankle into my pelvis & common iliac vein. My common iliac vein is now occluded. The pain in my groin/hip area subsided after a few weeks but I did have massive swelling in that area. I just rested when possible & elevated my leg above heart height & took pain killers.
19903
Re: Blood clot in pelvis
Reply #3 by Emily
Posted: January 26, 2011
Wiffle,
I had a clot from my ileac to all they way down below my knee and some additional clots below that. I wear compression hose and that helps the pain and swelling considerably. I hope that helps. Also, did you ask them about putting in a filter? I have a filter in to prevent the clots from going to my lungs. However, I already had clots in my lungs so that might be why, but I would ask your doctor about this. Good luck.
19908
Re: Blood clot in pelvis
Reply #4 by Diane
Posted: January 26, 2011 at 01:55
Wiffle,

Do some research on "May-Thurner Syndrome," and you will learn a lot about iliac vein clots and the congenital issue that leads to this situation. Ask you vascular surgeon about it and if he has no idea what you are talking about show him what you have learned.

If you are eventually diagnosed with MTS feel free to contact me about the resource group I have created @ woodcreek12@aol.com

19909
Re: Blood clot in pelvis
Reply #5 by blessedmomof2
Posted: June 14, 2011 at 04:00
wiffle,
You are not alone. I was diagnosed with a blood clot in my iliac vein about a week ago. I had recurring abdomen pain and also was complaining of pain in my lower right butt check that reach to behind my right knee. A doctor ordered a ct scan to see about the abdomen pain and stated the other pain was caused by a pinched nerve in my back. When the ct scan was read they discovered the clot. One doctor thinks it was caused from PID caused by a IUD I had removed in April. The doctors are a little puzzled due to there being no clots in the lower part of my leg. I am on 2 lovenox shots and 15mg of coumadin daily. For some reason my PT/INR test still come back 1.7. They are wanting it between 2.0-3.0. I have been informed to take it "easy" for 6-12months. I can not sit more than 2hours, ride a lawn mower, 4 wheeler, boat, basically anything with any type of jerking movement, hold my son 1yr old other than getting him out of his chair/car seat, Do not have "honeymoon sex"... the list could go on and on. What type of precautions where you given? I am scared to death being i am only 26 but I still do not want to live in a bubble for a year if it is not necessary. I see this was posted in January so ANY information you have received since then would be VERY much appreciated. I hope you are doing GREAT and healthy as ever, blessedmomof2
21754
Re: Blood clot in pelvis
Reply #6 by David White
Posted: October 3, 2012 at 20:16
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26490
Re: Blood clot in pelvis
Reply #7 by SJ
Posted: June 2, 2013 at 20:58
I had blood clots in both lungs last September (2012) and was
immediately put on Warfarin and had the shots in the tummy for a
couple of months as well. I have a very old Dr. who can't remember
anything from one appt. to the next even when I was seeing him once or
twice a week. Anyway, I was wondering if I should be asking to see a
specialist as they never did verify where these clots came from. I
have such severe back pain that I swear it has to be coming from
there. This past week the pain started radiating into my pelic area
which has never happened before. I have a physical job and can't
afford to quit as I have no other training but am worried that I'm
killing myself. I only could afford to take off 1 month after the
clots. Now I have to try and get by on have of the work I did before
as I just can't seem to do any more. My Doctor gives me 0 info and if
I ask him anything he says I worry too much so I don't ask him a thing
any more.
27162
Re: Blood clot in pelvis
Reply #8 by SJ
Posted: June 2, 2013 at 21:16
Sorry, didn't realize how this forum worked. I shouldn't have posted
the above question here. I don't see any way to delete it so just
ignore it and I'll repost elsewhere.
27163
Re: Blood clot in pelvis
Reply #9 by Bobby
Posted: June 4, 2013 at 04:16
Hello guys,
I was diagnosed with a blood clot in my left internal iliac vein, 8 weeks ago. The clot travelled all the way down my leg. Im 29 yrs old and have 3 children, the last 8 weeks have been the worst for me and my family. Im in so much pain, and as a result of this i have not worked, or been able to look after my children as i did.
If anyone out there knows when my body will break this clot up, pls respond to this.
I feel desperate most days as i just want to b as i was. Im taking warfarin and do not know why this has happened to me. Im very active and not over weight. Is there anything i can do to help this to get better???? Thanks
27183
Re: Blood clot in pelvis
Reply #10 by Diane
Posted: June 4, 2013 at 05:53
Hi,

Clots are funny things and can dissolve in a few weeks, or not dissolve at all.

I got my second clot in Oct 2010, from ankle to iliac veins, both deep and superficial. I was off work for 3 months and then 3 months admin work before back to clinical (I'm a nurse). It took a good 6 months after that to get back to reasonable normality at work, although I still have issues with certain things.

I won't sugar coat it but it has taken until recently to get control. I still have clot from just below my knee to before my groin and from above my groin to the join of the iliac vein to vena cava, so it's looking like it won't go. I have PTS.

On the positive side, as your clot is only 8 weeks old, you might find someone to consider thrombolysis - a clot busting drug which can break down the clot. It is best done within 3 weeks, but some will try it later than that. Stenting can be done, but isn't widely available.

Things can take a very long time to improve - I was told a year, but note with both clots I've had that it can be up to 2 years. Learn what makes things worse (eg too much activity early), rest where you can and don't over do it. I found that by doing less, I could do more (if that makes sense) I sacrificed speed for stamina. Give yourself more time and whilst I understand wishing everything was as before, it might not be for some time, if ever, but pushing yourself too hard makes pain worse and makes you feel worse. Set small challenges and accept that it's just going to take a while. I've now reached a point where I manage to do most things and can only now push myself to increase activity without pain etc getting completely out of control.

Sorry it's a bit long winded, but I hope it helps and I wish you well.
27184
Re: Blood clot in pelvis
Reply #11 by Charles
Posted: October 28, 2013 at 13:49
Thank you Diane for mentioning May-Thurner as a possible cause of my
DVT. I am a 40-something year-old male with a DVT in the common iliac
extending to the junction of the vena cava. It was discovered by CT
after presenting with pain in the central pelvic region. No swelling
then or at present. Put me on Lovenox and Warfarin, maintaining INR at
2.5 and I will see a hematologist in 2 more weeks. I expect some
intensive blood testing for Factor V Leiden etc. I have read that the
time to expect to be on the Warfarin is highly variable but most
likely 3-6 months. I have also read it is possible for the clot to
really never heal but just become permanently stable. Thanks to all
for the good information.
28082
Re: Blood clot in pelvis
Reply #12 by MP
Posted: October 29, 2013 at 09:28
Hello,
Definitely ask about thrombolysis and stenting. If the clot doesn't dissolve completely, it will be the focus of more clots in the future because the vein isn't "smooth" anymore. Also, as Diane said, May-Thurner causes a narrowing of the vein. I just had a stent put in for iliac DVT from 11 years ago after 2 days of thrombolysis...my doctor strongly believes that there is no "time limit", and I happily agree with him. Find an interventional radiologist who is willing to work with you. Research has proven that the common treatment of just anticoagulants doesn't usually resolve pelvic clots, and there can be severe consequences down the road. Good luck!
28092
Re: Blood clot in pelvis
Reply #13 by Charles
Posted: October 29, 2013 at 10:26
Thanks MP. At this point I don't have a medical diagnosis except what
I've given myself by reading too much :]. My primary care doc seems to
think the focus of my hematologist's appointment will be on blood
testing. I wish I could go tomorrow. I don't like this waiting game.
Prior to the stenting and clot-busting, during those 11 years, had you
had any other occurrences of DVTs? Had you been on any other
anticoagulants besides warfarin this whole time? Thank you.
28093
Re: Blood clot in pelvis
Reply #14 by MP
Posted: October 29, 2013 at 12:10
The blood testing is certainly important. In my case, after two hematologists and dozens of vials of blood, no disorder was found. I had recurrent DVT both times I came off Coumadin, so I stayed on it for 10 years. I recently switched to Xarelto and so far am happy with that. I didn't get the May-Thurner diagnosis until 2 months ago, when increasing pelvic pain led me to find another doctor who quickly determined the problem and the solution. He feels that I should stay on anticoagulants to make sure the stent stays open, but not all of them keep patients on them indefinitely after stenting. Keep reading and be an "informed patient who asks reasonable questions" vs. a "demanding know-it-all telling the doctor how to do their job." It's a fine line ;) A good doctor will respect your attempts to learn more about your condition if you make sure to respect their ego a little.
28094
Re: Blood clot in pelvis
Reply #15 by Charles
Posted: November 8, 2013 at 14:03
I have returned from the hematologist and tested positive for Lupus
Anticoagulant and negative for the other proteins, antibodies, and
factors. Doc says I need to retest in three months for a 'persistently
positive' result since I'm told this test is easily subject to false
positives, especially if tested while taking anticoagulant drugs
concurrently.
28177
Re: Blood clot in pelvis
Reply #16 by MP
Posted: November 9, 2013 at 17:38
Will you retest after stopping warfarin? Are you still having symptoms? My doctor wouldn't do any testing while I was on warfarin because of the unreliable results. Which side was your DVT on? I hope you're doing well!
28180
Re: Blood clot in pelvis
Reply #17 by Marigrace Furby
Posted: November 19, 2013 at 20:33
I am overweight. I weigh around 300 lbs give or take 20 lbs. I am 5 foot 3 inches and am
52. My legs have been painful for several years. Worse in the last year. Today I was fine
when I got up but then when taking a step later in the morning the pain in my upper, inner
thighs on both legs and vaginal area all of a sudden became horrible and I can't walk now
without assistance as the pain when I take a step is very sharp and painful. Doesn't hurt so
much when I am sitting but any attempt to walk is painful. No fever, no other pain, but just
really bad in that area. Any ideas?? My email is marifurby@yahoo.com
28205
Re: Blood clot in pelvis
Reply #18 by Charles
Posted: December 20, 2013 at 10:20
Thank you MP. My DVT is on the left side... the side where the iliacs
cross and cause problems. I was using a compression sock for awhile. I
have visited a new PCP around the 1st of the month who noticed some
pitting edema in both legs. The symptoms still come and go even now,
more than 60 days out. The hematologist didn't seem to think the lupus
anticoagulant was a big deal even if persistently positive. He told me
that a recurrent DVT has less than a five percent chance of showing up
once off the warfarin. Second opinion in order? Uncertain.
28319
Re: Blood clot in pelvis
Reply #19 by Charles
Posted: January 20, 2014 at 08:49
For those with pelvic/iliac DVTs. How long before symptoms have
subsided for you? Any other long-term medications prescribed out there
to prevent another thrombus other than staying on warfarin? Thanks all.
28511
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