pelvic Congestion Syndrome

[Romans8:28]

Has anyone ever heard of or been diagnoised with this???

My last CT scan report..., says I have this.., TOO!

Shelly

[cgirard]

Yes, pelvic congestion syndrome can cause pelvic pain. Sometimes they embolize the veins for this.

http://www.hopkinsmedicine.org/vascular/conditions/pelvic/index.html

[Romans8:28]

I have been sent to a GYN, and I found a physical therapist that treats pelvic pain. including IC, Pelvic congestion syndrome. The doctors feel that for me, there are too many places for the embolizartion....,and are leaning to a hysterectomy...
they PT says this won't solve it and that she can teach me how to treat it... I just started seeing her so we will see... I hope she is right.

Do you have Pelvic congestion syndrome and IC?

Shelly

[MeganAnne]

This is an interesting topic... My physical therapist just told me about PCS today and I wonder how I can get tested for it. She said a combination of having cold hands/feet, hormonal imbalance, and some varicose veins (I'm only 26!) makes her somewhat suspicious. My IC-related pain is mostly a heavy "gotta go now!" feeling plus I have burning/stinging vulvodynia pain. Does PCS feel different?

[crkshnks79]

I have been sent to a GYN, and I found a physical therapist that treats pelvic pain. including IC, Pelvic congestion syndrome. The doctors feel that for me, there are too many places for the embolizartion....,and are leaning to a hysterectomy...
they PT says this won't solve it and that she can teach me how to treat it... I just started seeing her so we will see... I hope she is right.

Do you have Pelvic congestion syndrome and IC?

Shelly

Roman !!
before you go to a hysterectomy , try to see a Interventional Radiologist !!! I was treated w vein embolization for mine and the doc said that a hysterectomy might not necessarily work because the veins run along your reproductive organs as well and and I dont think they remove them during a hysterectomy ?? I would just double check , especially if you dont want one . I had my veins fixed and the pain and discomfort that was associated w Pelvic Congestion Sydrome went away after about a week . Its something to think about at least ..

[crkshnks79]

During my search for causes for my pelvic pain , doctors found PCS through an abdominal CT scan . I went to see an Interventional Radiologist at Crozer hopsital ( chester , pa ) who had affilations w Johns Hopkins . They had get an MRA done which is like an MRI but I think it may focus on the veins more . It showed that my veins were EXTREMELY dialated !!! My left was worse then my right but all over the place I had veins like this ... Now I dont have vericose veins in my legs BUT that is a main factor in having PCS . Mine was caused by having children , especially having 2 back to back children .

MY PCS SYMPTOMS WERE :
1) Always feeling " heavy " in my lower abdomen , like I was carrying around a baby or bowling ball lol
2) low backaches
3) general feeling of dull ach all over the lower abdomen ( I guess if its worse on one side it could be more achy on that side , but mine was worse on the left and I still felt it big time on both sides and in my back )

I hoped some of this helped you ?? I got my vein embolization fixed the december that just passed , id recomend it to anyone . While it obviously doesnt fix all your problems or take away all the pain or discomfort you have from other issues , it def took some of my discomfort away !!! Best of Luck !
Lauren

[Romans8:28]

THanks so much for your posts! Like you didn't find much here but went searching for info. At this point I can tel the difference between my PCS and my IC. My doctors all said that to do the vein surgeries actually can be worse since it would have to be repeated sometimes often. They were all ready for either putting my on a hormone thar would medically stop everything or doing a hysterectomy! However I found a PT for Pelvic pain that knew about PCS. I went to her and she helped me more then anyone.
She taught me how to use massage to move the blood flow out of my pelvic reagion. and also on really bad days to get off my feet and rest! She also found a lot of scar tissue which she (and I) manually broke up over several months! She found PFD too and gave me exercises for it! Over all I think she has helped me more then anyone! If you live in MO contact me and I will give you her info, Otherwise I highly recommend PT over any surgeries. I now only have a couple bad days a month other wise it seems under control!

Thanks for your posts!
Shelly

[MeganAnne]

Thank you so much for the information. :) What kind of doctors can do this kind of testing - a urologist or gynocologist?

[Romans8:28]

I believe when my doctors and I discussed it that the testing is done by a specail kind of radiologist. It rarely shows on normal testing since you are laying down and the veins buldge when your standing... from the pressure. The fact that my one side did show on a CT scan was very lucky, we caught it just right. Then without further testing they could diagnoise just by my symptoms.

One way to know if PCS is causing your pain instead of IC is that the pain goes away when you lay down. It may take a little while but getting off your feet brings relief. My IC seems to get louder when I lay down. The other thing I really notice is if I have to strain for a bowel movement, the PCS becomes really bad. I know this also effects my IC however it is a different pain, more on the side, really sharp etc.

If you think you may have this I really do encourage a pelvic pain PT, if they are trained in both IC and PCS they can help you more then anyone, even with the diagnosis! Just ask them ahead of time and ask around in your area.

Shelly