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pelvic congestion syndrome

Posted , 28 users are following.

katie191182
katie191182

Does anyone suffer from this? I have a dull ache in my lower abdomen. It feels heavy and I also have a burning sensation. It starts off not to bad then gets worse throughout the day. No problems when at test. I ve Googled and stumble upon this and symptoms match this syndrome

2 likes, 32 replies

32 Replies

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  • shannon86083
    shannon86083 katie191182

    Posted

    I have had pain in my pelvic region on and off for a few years now. I have had tests done and nothing ever shows up , not even infection. I am currently waiting for another ultra sound to see if it shows anything. Just feeling hopeless and tired of the uncomfortableness
  • cathy88329
    cathy88329 katie191182

    Posted

    Hi to you both, your symptoms sound so similar to mine, I've had a stitch pain in the right side of my abdomen, as I've got older it seems to be getting worse, do you think it's worth trying to get a ct scan?  I've also had all the tests to hit on Nothing, but I still have the stitch pain? Does anyone know where I should go from here? I feel my doctor didn't want to know when I saw her today? But as you both say it's frustrating I just warn reassurance like yourselves. X
  • mariakom
    mariakom katie191182

    Posted

    hi

    I have pain left side down pelvis/ groin area for 1 year.It is like a burnning and it is all the time,morning better,worst at night.Had MRI that shows pelvis vein congestion,but dr said that are no treatments for this,he addvice me to have contraceptive injection every 3 month,that might help with blood flow.Some other dr said might be muscle strain or nerv demage.Still not know.Will see soon neurolog.

    Do you have this pain for a long time?Think of what u did before the pain started.(I did lots of exercise for my tummy and I think that might cause me a nerve damage)

  • alice57
    alice57 katie191182

    Posted

    Yes my sister has been diagnosd with pelvic congestion syndrome. She had a doppler ultrasound scan. It sounds like you need to see a gynaecologist. Ask your GP for a referrral. 

    To read more about pelvic congestion syndrome see this article - my sister sent it to me: http://www.emedmd.com/content/pelvic-pain-4

    However there are lots of reasons for pelvic pain e.g. fibroids, ovarian cysts, endometriosis etc.- see here for an article about pelvic pain:

    http://www.emedmd.com/content/pelvic-pain

    Good luck and best wishes, Alice

     

  • callie19470
    callie19470 katie191182

    Posted

    I stumbled onto this discussion when I was online and thought I might chime in. I had lower back pain for years that I thought must have been an old injury. I tried lots of things to relieve it but it just worsened with time. When I was on my feet at work it got much worse so I got compression hose from my dr and they helped with the pain in in my legs but not my back. It wasn't till I talked with a dr who specializes in vein treatments did I find out I have Pelvic Congestion Syndrome. I've had my pelvic veins treated and my life is so much better. This gets under diagnosed so much and lots of women and even men have problems so I'm happy to answer questions about my experience if you want.
    • taddyb
      taddyb callie19470

      Posted

      Hi Callie,

      I've been having pain in back that wraps around to my front, where it is the most intense. I've had a CT scan and an ultrasound, both of which show a gonadal vein measuring .8 cm and other enlarged veins near my ovary. Both reports mention pelvic congestion sydrome. My pain sounds a little different than what I've read about. It's worst when I first get up and gets better as the day wears on. I cannot sit for more that a few minutes without pain. I feel like I have to constantly move to avoid pain. There are times when I'd put the pain at 10 - like this morning at 3:30 when I got up to pee (for the 3rd time!) and it started. There's nothing i can do to get comfortable, or make it better. It just finally wears down and becomes more of a nagging background kind of pain. I was diagnosed with osteoarthritis of my back despite the test results! After mega NSAIDS, muscle relaxers, a round of steroids, and PT, I'm still in pain. I'd appreciate your thoughts on this.

    • sanya11314
      sanya11314 taddyb

      Posted

      I get automatic email reminders if a followed post (and once you answer in a post, you follow automatically unless turn it off on purpose).

      Hopefully callie has not unfollowed this discussion.

    • NextHT
      NextHT sanya11314

      Posted

      Sanya, did you get any answers? I ran across this trying to help a friend get info. I have PCS and had embolization with coils 3 months ago.
    • sanya11314
      sanya11314 NextHT

      Posted

      Nope, no answers.

      How was your PCS diagnosed?  

      (in the MRI 'blood suppy of pelvis' was stated, but there was no real good pic of veins, only of the 2 big arteries and documented as : normal. I highly fear, radiologist did not look for PCS, just brushed a bit over it. Had many false results in x-ray and MRI, hence very suspicious when a 'normal' results comes back and I can't verify it myself)

    • NextHT
      NextHT sanya11314

      Posted

      Initially I was diagnsed in ER via a transvaginal ultrasound and then through a MRI with contrast to see the blood flowing through the veins and moments prior to coils being injected a venogram with contrast to see exactly where the veins needed embolization. It took years to figure out. There is a great active group on facebook.
    • sanya11314
      sanya11314 NextHT

      Posted

      Thank you!

      As I thought our MRI for 'pelvic blood supply' check was insufficient....got no contrast!

    • NextHT
      NextHT sanya11314

      Posted

      I I have had 2 MRI in the last 3 months and both with contrast. One before my embolization and one 9 weeks later. (3 weeks ago)
    • sanya11314
      sanya11314 NextHT

      Posted

      May I kindly ask:

      the MRI found PCS with gadolinium (in arm//hand vein) only?

      Or was imaging for diagnose only via catheter in femoral vein in a specific venogram  possible (or is this fluoroscopy through femoral vein only when actually during the coils for treatment?)

      TA!

    • NextHT
      NextHT sanya11314

      Posted

      Yes, the MRI with contract in the arm found PCS after a transvaginal ultrasound. Venogram with contract and embolization was done from my neck.
    • callie19470
      callie19470 taddyb

      Posted

      Hi Taddyb,

      Your symptoms seem pretty classic to me for pelvic congestion. Although it is likely you've got other problems too like the osteoarthritis the fact that they could see your dilated gonadal veins and other vessels counts as a positive test in my book. It's totally worth your time to find a doctor that treats veins by shutting down the problem veins with coils. I recommend finding a clinic run by Interventional radiologists because they are trained to do this in a very minimally invasive way. A vascular surgeon is another option but from my experience they usually work in an operating room which adds more cost and procedures.

    • karen08997
      karen08997 NextHT

      Posted

      Hi I stumbled across this discussion whilst looking to see if I could find prostatic e reviews on the embolism for pelvic congetion. Could I please ask if it was a success are you now pain free. 
    • sherry28116
      sherry28116 NextHT

      Posted

      I was diagnosed with PCS about a month ago after Transvaginal ultrasound and then a CT scan. I am having the same embolization procedure done next week by a Interventional Radiologist, anything I should be aware of?
    • sanya11314
      sanya11314 sherry28116

      Posted

      Yes, that PCS can be a result of nutcracker syndrome (compression of renal vein) further up, hence not tackling the real issue behind it.

      Make sure nutcracker was excluded!

    • Nattyg1980
      Nattyg1980 callie19470

      Posted

      hi, I wondered if you'd be able to help me? i have pain in my pelvis when i stand and walk and i wondered if i may have pelvic congestion? would you explain your story to me please and the treatment you recieved? its utter torture for me to stand and walk , I'm literally having to use a wheelchair, i lobe to hear from you. thank you xx

    • Nattyg1980
      Nattyg1980 sanya11314

      Posted

      can the nhs treat these conditions? if so which hospitals in england do you knkw of please. thank you so much..... i have so much pain ... many thanks Natalie

    • rachelraquel
      rachelraquel sanya11314

      Posted

      is this what you had? what were your symptoms? I've had extreme symptoms and was diagnosed with PCS and am trying to see a vascular surgeon now

    • zohrehosteo
      zohrehosteo Nattyg1980

      Posted

      Hi Natalie,

      There is a very experienced specialist for treating PCS in Gatwick Park Hospital in Horley. I understand he also works with the NHS. Hope this helps. Zohreh

    • ashley49004
      ashley49004 callie19470

      Edited

      Hello, Thank you for Answering. I have suffered for yr 7 now. Every movement hurts something. I cant sit or stand for long at all anymore. I am an Active 36 yr old mom of 2 little ones.

      What did you do to Fix yourself? I've seen so many specialists.

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