1. Community
  2. Blood & Immune System
  3. Deep Vein Thrombosis

DVT and extreme lower back and pelvic pain

Posted , 7 users are following.

Pixwix
Pixwix

I was diagnosed with a DVT beginning of Dec. Followed by a PE and then fitted with a vena carva filter which was removed over a week ago.

I have had excruciating lower back and pelvic pain for weeks now and was wondering if anyone else has this as well?

My vascular surgeon seems to think that the pelvic pain is a separate issue from the DVT yet I'm convinced it is all linked some how.

Has anyone else had this as well? It would be great if anyone can shed some light on this. smile

Thank you@

1 like, 29 replies

29 Replies

Next
  • Karinbra
    Karinbra Pixwix

    Posted

    I am not sure if it is at all related, but there has been a suggsetion of a link between clotting problems and something called pelvic congestion syndrome on this website.  A relative of mine successfully underwent treatment after many years of frustration when it was finally revealed that this was what she had. Bear in mind that you should see a specialist in this particular field as, for example, early scans which my relative had did not reveal what was actually happening in her pelvis as they were taken when she was lying down. She was fobbed off by a fair number of gynacologists so it is worth persevering to make sure you have it properly checked ou. However it does usually typically show up more in women who have had children and so am not sure if this applies to you. Whatever the case, it is worth speaking to a medical professional about it to make sure that symptoms are assessed and diagnosed correctly.

    Good luck with sorting it out!

    • Pixwix
      Pixwix Karinbra

      Posted

      Thank you karinbra. That really helps and I will definitely look forward not it. smile
    • Pixwix
      Pixwix

      Posted

      I mean I will definitely look into it :P
  • sheila91262
    sheila91262 Pixwix

    Posted

    Hi there, I know something about May Thurner syndrome which you can look up online. It causes pain in the groin area and sometimes shows up for the first time after a leg DVT. Where was your DVT? I may be on the wrong track, but it's worth asking about, MTS is usually detected by ultrasound scan. A vascular consultant will be able to advice if you do have it. Have you been advised to exercise to encourage your veins to open up secondary small veins so they circulate more blood, known as collaterals.

    Hope you get to the bottom of this soon.

    Sheila. 

    • Pixwix
      Pixwix sheila91262

      Posted

      Thanks Sheila

      My clot us in my left groin.

      Been told to walk when I can otherwise I need to keep legs up sad

    • karen62535
      karen62535 Pixwix

      Posted

      Hi

       Can I just say beware of this advice. Ihad DVT in both legs starting from the groin and a PE to the lung. I was told to keep legs up and rest as much as poss and only walk when I had to. 6 months later, my thyroid had packed in through non movement, I gained 4 stone in weight which I am now struggling to lose, and I have developed Post Thrombotic Syndrome. This is a condiotion after a condition, caused by the resting with my feet up. Since then, specialists and other doctors have said the exact opposite...that I should have been exercising, so please get a second opinion on that. I wouldnt wish this on anyone. Doctors who are at a loss as to what to advice seem to be telling people to rest...it does not help to be still.

       

    • Pixwix
      Pixwix karen62535

      Posted

      Thank you Karen.

      I'm 37 married with 2 kids, and have my own business, so even though the first few weeks were spent in hospital resting, and my hubby ran things for me, I am now home and as I feel better I am moving around more and more, so thank you for your advice as I think you are absolutely right. My doc recommended I move as much as I can and put feet up when I rest.

      I have good days and bad days but make sure I move around every hour at least on my bad days.

      I am absolutely petrified of this happening again, and I can only imagine what a challenge it was for you to have a DVT on both legs!

      Fortunately the pain and meds have taken away my appetite so the silver lining is that I have lost 5kg in a month and a half! I will do whatever I have to avoid ever having to go through this again. I can imagine you must feel the same.

      I don't think anyone can fully appreciate how overwhelming something like this is, and having the PE and realising how a close call it was seems all quite surreal to me.

    • Pixwix
      Pixwix

      Posted

      So thank you for your advice. I will definitely keep it in mind, and I hope you have a "speedy" recovery. smile
    • sheila91262
      sheila91262 Pixwix

      Posted

      Hi, I "sent" you this earlier but it disappeared! You mention having a filter but nothing else, are you on blood thinners? Glad you are able to be mobile. 

      Sheila

    • Pixwix
      Pixwix sheila91262

      Posted

      Hi Sheila

      Yes I have to take Warfarin for at least 6 months. They still trying to figure out the correct dosage as my INR ranges from too high to too low.

      I developed a PE despite the fact that my INR was 5.7 which is why the vascular surgeon opted for the filter. He actually showed me the clots it had caught when he removed it after 3 weeks which was rather fascinating.

      The clot is still completely blocking the main vein in my left groin so my leg is still very blue and it gets very a painful and "heavy" sensation afterwards.

      Has your clot dissolved yet? If so how long did it take before it started dissolving?

      Thank you for your replies. It's awesome being able to chat to people who have actually been through this as well smile

    • sheila91262
      sheila91262 Pixwix

      Posted

      Hi, My son had the DVT in Jan 14 after abdominal surgery where he was sent home without blood thinners. He was on heparin then warfarin and his INR was good and stabilised at 2.5. He received almost no aftercare and was scanned on the GPs request and his body healed the clot but as it was extensive it took several months. He wore compression stocking on his leg as most of the daily swelling was in his entire leg but worst at the calf. He has Post Thrombotic syndrome as the clot left scars and damage to the leg vein, so had pain and swelling and a feeling of numbness. Hopefully you won't develop PTS, he also has MTS that I mentioned above. The best place for advice is Guy's and St Thomas Hosp London, their Vascular dept is second to none. He was told to be active and exercise and don't worry if it hurts as that is only short term. He was told he would improve over 2 years and that is what happened and he was able to do more exercise and have fewer symptoms. He was able to return to playing golf etc which was his aim. So stay active and you will feel better than you do now, stay confident. If your warfarin and INR levels won't improve they can put you on a different medicine.

      Sheila

    • karen62535
      karen62535 Pixwix

      Posted

      Bless ya!! And yes, it is a wake up call isn't it? There I was working like a Trojan and running around at 200 miles an hour and WHAM! So, surreal, you are right. And yes, I find even now when my legs jump at night, I can still feel the jolt and I think I'm going to die. It is rather dramatic but boy, it does make you panic. I hope you enjoy getting better, and here's to not taking life for granted again. haha

       

    • Pixwix
      Pixwix karen62535

      Posted

      Hi Karen. You mentioned 'when my legs jump at night'.... I think I also get that. When I'm sleeping I wake up with a jolt and my legs jump up lol! It's a rather weird sensation and catches me totally off guard every time .. :P

  • michelle181170
    michelle181170 Pixwix

    Posted

    OMG i too was diagnosed with DVt IN POPLITERAL VEIN BACK IN DECEMBER,   Sadly even after 6 weeks on RIVAROXIBAN  the swelling and pain returned so had another USSDOPLER & now ts classed   as EXTENSIVE  DVT as its now larger and well above the knee..

    Since this has started my lower back feels as if it is going to snap i dont have to travel too far either so i am pretty much hoiuse bound right now not good at age of  45yrs. Still waitingt to see Consultant to find out more

    what do you do to cope with this  my husband thinks im exaggerating im sure

    • sheila91262
      sheila91262 michelle181170

      Posted

      Hi, Are you exercising as it helps to reduce the symptoms? The swelling can be very painful, do you get a sort of dead leg feeling too ?

      Sheila.

    • karen62535
      karen62535 michelle181170

      Posted

      Stick with it Michelle. My DVTs were in both legs from the groin down and like you could not travel, even after 7 months after first getting it. I thought life of any use was over for me and I';m only 46. But with a little exercise at a time and a lot of bloody patience, it does get easier. Better, I can't speak for you, but easier definately. I still cant bend properly, nor walk for long distances, but it doesn't pain me half as much as before and I'm now a year after.
    • michelle181170
      michelle181170 sheila91262

      Posted

      hello Sheila   thank you  for your reply as to swelling  yes it does feel like i have a dead leg  when it does swell  up it can take days to reduce again
    • michelle181170
      michelle181170 karen62535

      Posted

      oh i do hope you are right it feels like im house bound and as a result i tend not to see hardly anyone  for weeks at a time

       

    • adrian_15415
      adrian_15415 sheila91262

      Posted

      Hi Sheila

      I am new to this site and also to DVT.

      The consensus seems to be that exercise will help, but in my case walking hurts like hell after a very short time.

      Do you know of any excercises that can be done, other than while walking up and down?

    • sheila91262
      sheila91262 adrian_15415

      Posted

      Hi Adrian, Do you know much about your DVT? have you had a scan to check it's progress? Do you wear a compression stocking? Normally a Dvt takes several months to clear but if it is extensive it will probably take longer. The info leaflet on this site is good and so is info on NHS and Thrombosis UK websites. 

      The complication that may arise is that sometimes a DVT leaves behind scarring which results in symptoms of Post Thrombotic Syndrome. My son has PTS and was able to walk and exercise well after about 6 weeks but had pain and swelling in his leg. He was advised to swim as it is non weight bearing. The stocking helped to reduce symptoms and he was able to walk more over time even though it still hurt but it was doing good as it helped to improve his circulation and produce collaterals. There are several strands on here about DVT, PE, PTS and MTS which might help you. If you give more detail you may get more accurate advice from others too. Good luck.

      Sheila

       

    • karen62535
      karen62535 michelle181170

      Posted

      Hi Michelle., How are you doing now? It's been quite a while since I last logged in. Are you feeling any better?

    • michelle181170
      michelle181170 karen62535

      Posted

      Hi Karen, to be honest its still up and down for myself  feeling a little blue at this moment in time not much longer now until get to see specialist which will be on the 14th July. they have been talking about putting my INR range up to 4 & 5 which i dread i have enough problems now keeping it on level par but lat 2 weeks its been 2 & MY RANGE IS 2.5) I TAKE 16MG WARFARIN 3 DAYS WEEK & ON THE OTHER 4 ITS 15MG.

      Seeeing the specialist a least gives me the option of asking questions regarding my problems, as to wether or not i get any answers remains to be seen.

      Hope you are well

      Michelle

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.