Just recently after being diagnoised with IC for 4 years, I was also diagnoised with Pelvic Congestion Syndrome. This is basically like vericose veins in the pelvis, and cuases the blood flow to increas in the region and back up into the ovaries. This does not usually show up when laying down so is missed on x-rays and CT scans. I was "lucky" in that it was soo bad on one side it showed up on my CT. When they suspect this most patietnt have a standing MRI or other type of radiology.

Doctors often want to do a hysterectomy for this syndrome but because it is a issue of the veins unless they are also treated a hysterectomy will not solve the problem! The thing that was the hardest for me is the limited info on this syndrome! I was very blessed however with a PT who not only works with IC, and PDF but was familiar with the Pelvic congestion syndrome. She taught me how to use the lymph system to more the blood flow back out of pelvic region. Gravity increase the pain and blood flow! Stregthening the abdominal muscles can help this syndrome!

I am so amazed with all the info. that is out there on Pelvic pain that more people are not familiar with this syndrome.

Shelly

Hi Shelly. Thank you for your posting! I am not familiar with Pelvic Congestion Syndrome. I know that vericose veins can sometimes be painful. Since you described Pelvic Congestion Syndrome in this manner, are you experiencing an increase in pain? The idea of blood flow backing up into the ovaries sounds painful. Can you describe some symptoms that accompanies this condition? This really sounds like something people need to know about!

ggtrr just did this long post and it gave me an error message!

Anyway, yes pelvic congestion syndrome is painful. It has similiar pain as IC, that crushing vice feeling but there is also severe flank pain when the blood backs up to the ovaries. To me it was very confusing before we knew because it feels a lot like a stone when it is obstructing and sending the urine back into the kidneys. The pain of pC gets worse when you are on your feet too long but unlike IC gets gradually better when you lay down and let the pressure off! To me it seems like my IC gets worse we I laydown, amybe because I am still and thinking about it! LIke IC my pain get worse during my cycle, when I ovlulate or after the physical relationship!
Like IC at times the pain gets soo severe I can hardly walk. However the PT helps a lot

The treatments for PC are different then IC, so a patient with pelvic pain that doesn't respond to IC treatments might want to ask their GYN if they could have this! I had never heard of it before being diagnosied nor had my URO. My GP did not believe it was real, but I then talked to many GYN's that told me it was very real and needed to be treated! I add that because like IC there are some doctors that won't take it seriously!

PC is common in women who have had mutiple pregnancies and difficult births. If a women has vericose veins, hemorriods etc. She is very likely to to also have PC. I was amazed after being diagnoised at the lack of info, on this condition esp. in the pelvic pain community! I really appreciate your interest! Since it is hard to diagonise with the standard test, I really believe it is more common but often missed by physicians treating pelvic pain patients!

The day may come with my PC that we have to do more dramtic treatments like, using chemicals to put me into menapause, (what the gyn who diagnoised me wanted to do) or even do a hysterectomy, etc.. But the physical therapist has given me the coping tools to get the pain undercontrol so far!

Shelly

Wow! Such a serious health concern and so little info. I hope this helps someone that may be struggling and has not been able to find any answers. Thank you for sharing your story with The Community.