Pelvic Congestion Syndrome Community Group
Pelvic venous congestion syndrome PCS or Pelvic Venous Insufficiency / Incompetence is similar to the condition of varicose veins in the legs. In both cases, the valves in the veins that help blood flow toward the heart do not work properly. As a result, blood pools in the veins, and the veins in the affected body part stretch and bulge. In pelvic venous congestion...
Hi there! Is this group still active? I didn't find any threads in the discussion area. Please let me know.
I've been dealing with daily pelvic pain for almost two years now and still haven't been diagnosed. I strongly suspect pelvic congestion based on my symptoms and imaging studies showing dilated veins (some with retrograde flow, and one with a thrombus) around my ovary and uterus. Unfortunately for me, this syndrome is not taken very seriously by the medical community in my home town and only a couple of patients have been treated for it in the past several years (apparently with a less than positive outcome).
I would love to hear your stories and exchange info and tips.
Flutie
Daily pelvic pain since August 2010, as yet undiagnosed
I've been dealing with daily pelvic pain for almost two years now and still haven't been diagnosed. I strongly suspect pelvic congestion based on my symptoms and imaging studies showing dilated veins (some with retrograde flow, and one with a thrombus) around my ovary and uterus. Unfortunately for me, this syndrome is not taken very seriously by the medical community in my home town and only a couple of patients have been treated for it in the past several years (apparently with a less than positive outcome).
I would love to hear your stories and exchange info and tips.
Flutie
Daily pelvic pain since August 2010, as yet undiagnosed
I recogonize your user name from hystersisters. I haven't seen any activity here but we usually have daily posts on our support group on facebook! Just search for Pelvic Congestion Syndrome Support Group! Hope to see you there!
Mackenzie
I am trying to get seen by an interventional radiologist, but it is difficult as there is a complicated and lengthy referral process here in Canada. Also, there is a lot of skepticism surrounding PCS as a diagnosis, and even the IR section at our hospital is divided on whether it is a cause of pain or not. Plus, they've only treated a couple of women quite a number of years ago, which is depressing considering almost a million people live in my city! I expect there are a lot of women suffering needlessly.
I did have an MRI and ultrasound in February, but I'm not too happy with how the tests were performed and interpreted. For the U/S, I was lain with my pelvis elevated about 8 inches above my head by a big foam wedge. By the time the doc arrived, I had been like that for over half an hour and I stayed that way through the entire exam. (I am still scratching my head about that -- how do you check veins for a gravity dependent condition with the patient upside down? LOL) She had an intern with her and kept saying things to her that indicated she didn't really believe in PCS -- super frustrating, as this exam was the result of many months of emailing different people to get in touch with a PCS specialist! Sigh... I'm glad you didn't have the same frustrations, Crystal!
Anyway, end result for me is that the MRI showed a 13mm vein next to my cervix, which my docs say is no big deal, and the U/S showed 6mm ovarian veins (despite test being first thing in the AM and me having my bum in the air!), with 6mm cluster of tortuous veins around left ovary. Most studies I've read say 5mm is the upper limit of normal for pelvic veins, so I feel I need to pursue treatment even though both reports said there is no evidence of pelvic congestion!
Sorry to blab on... I'll join that FB group, Mackenzie -- thanks for letting me know about it! Thanks again for your replies. I'd love to hear more about how you're both doing!
Flutie