Pelvic Congestion Syndrome

[MSKshelly]

I was recently diagnosed with Pelvic Congestion Syndrome! Does anyone else have this or know of some good resources of information on this.

Since I have had several children, and have also have interstitial cysitits, along with Meduallary Sponge kidney disease, with multiple stones and infection, I spend a lot of time in research to find answers. I am also an IC support group leader and work with other Pelvic Pain organizations, yet find little to nothing about this condition
even there.

When this new diagnosis was made, based on a CT scan which unusually showed the blood backed up in the left ovary, then I was sent sent to a GYN specialist, and a Pelvic Pain Physical therapist, all confirmed the PCS diagnosis, I was shocked at the last of information or support I could find on this condition!  The GYN here just wanted to do a hysterectomy but the specialist suggested this may or may not solve the problem.

My Pelvic Pain PT was the best, and taught me to move the blood flow using my lymph system.  This usually helps a lot, however had a bad bout of constipation that has flared it badly again and I am having trouble getting the pain back under control.  I would really appreciate any information or insight on this that I could find.  Not only for me but to help get the information out to others!!

Thanks for any input or advice!

Shelly

[jess601]

i was told 3 years ago when i was pregnant with my second child that i have msk and they left it at that. well just about two months ago i got kidney stones and ever since ive passed the stone my kindneys still hurt and im constantly neaseated again i went for a ct scan and it showed i still have stones in my kidney but they say there is no reason to why i still hurt im having a hard time with the pain and no help from the doctors and everything ive read on msk so far has said nothing to why my kidneys still hurt

[MSKshelly]

I thought my nausea was related to my MSK and kidney issues never connected it to
PCS.

Glad your doing so much better Jess!  What is up with the kidneys?

Shelly

[jess601]

i was finally diagnosed with pcs in december after suffering for almost 6 years of doctors telling me i was crazy.my doctor when she finally figured it out because of and ultra sound didnt know a thing about it so i had to do my own research and find my own spcialist which i did and hes awsome.in march i just had to of my upper veins embolized and it has made a significant change i still have to lower ones to be done but i dont know if i need it as of yet since there has been such a change and yes i did have nausea and the constipation and it was doing a lot better until my recent kidney problems i wish u the best of luck

[livnlrn]

I have been diagnosed with PCS and scheduled to do a hystorctomy next month.  I am trying to get a 2nd opinion before I do.

My main complaint is: NAUSEA!   I do have pain in the groin but not as bad as most people do.

May '09 I had my gall bladder removed because of the nausea and showed it wasnt working anyway.

I have been nautious ever since.  I seem to connect nausea and periods.  I am alway sick, and constipated right before I start.

Does any have NAUSEA with PCS?

[MSKshelly]

Well for me the only time one popped, my husband that I am now separated from jammed the breaks on HARD, several times to get the attention of the kids. This resulted in a lot of pain and 3 weeks of constant bleeding for me.  I would assume if the veins are so filled with blood that they can not handle it they will pop too.  I would imagine you would be a good candidate for a hysterectomy, with embolization.  My understanding is getting a hysterectomy does not always take care of the pain issues, unless the veins going into the uterus are treated at the same time.

What has everyone else heard or experience on this?

[spirit5]

I am 24 I have two kids. I've been going through 3 and a half years of bleeding for months at a time up to 6 months be exact. I had laproscopic surgery and found out I had a bad case of congestive pelvic sydrome. I can't take the pain and havnt found a good treatmen. I've felt a pop were most my pain has been and it started burning the pain was so bad it had me screaming and made me fall out in the floor. Would that mean a swollen vessel popped? I'm sao confused n need help.