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

[KimPCS]

Hi Ladies,

So glad to have found this forum, and I am going to join the group on Facebook too.  I too am debating whether or not to pursue the Embolization procedure.  My Ob/Gyn advised against it, however, I am extremely frustrated and uncomfortable w/ the constant pain. From what I have read, there is no guarentee of full pain relief after Embolization.

I developed PCS after my pregnancy in 2006.  I was having a constant dull pain on my lower right side, which was thought to be due to a small cyst that I had developed during the pregnancy.  My doctor found the variscosities on my Uterus during the Laprcoscopic procedure to remove the cyst. Since then, the pain is constant and has become a bit worse, especially two days prior to my menstrual cycle.  Having no relief from the pain is really wearing me down.

This has become a quality of life issue for me.  It would be great to read about some more experiences relating to the Embolization procedure.  If I move forward w/ this procedure I will post any additional information.

Thanks,
Kim

[angelbusch]

i m 35 yrs old. 3 kids, and have pcs, looked for a doctor for the last 10 yrs. found interventional radiologist at washington university/barnes st. louis, mo, Dr. vandantham.  I had coils put in both ovarian veins, helped with groin area pain tremendously. this was 2 years ago. I had no pain after surgery as others say they have. but the veins are still there and under buttocks and believe this is starting to cause problems in my leg veins.  I would like to get with all of you through my email ***@****.  I also am starting to experience the pain in pelvic area now during sex and after and around menstrual time.  I have found a doctor to remove the visual veins in groin area and buttocks due to this syndrome, I go this wednesday the 20th.   Please email me, I have written in to the dr. oz show and would like you ladies to go with me, we need to get this disease more known,  I am scared.  My pinky toe now has a blue tip on it.  Lets get together and hit this head on.

[BWM77]

Hello all, I have been diagnosed with PCS by a pelvic pain specialist in Birmingham, Alabama. I have been enduring the pain of Vulvadynia for 7 years. It has been the cause if much marital strife as painful sex is the last thing on my mind. After the birth of my 5 year old it only got worse and I began begin to feel a lot a pelvic floor pressure, especially before menstrual time. After the birth of my 10 month old, things really deteriorated. I began to experience severe pelvic bone pain 2 days after he was born. No I have the trifecta, PCS, Vulvadynia and this awful pelvic bone pain. My doctor has referred me to a physical therapist and I begin on 2/3. He seems quite confident in the physical therapy. Has anyone had any positive experience with phy. therapy and in anyone else battling vulvadynia at the same time?
BWM    

[MSKshelly]

YES!  I  can tell you my pelvic pain PT, was the most amazing woman!  I wish every single woman could go to a PT after they have a child.  My youngest was 14 and she could tell me by exam only my whole history etc, including some trauma I suffered from years ago!  A good  PT can really help heal and find many issue others doctors miss.
Mine also found that my pelvic floor was in a constant state of spams and was able to
relax the muscles so that was not the case!

For my PCS he taught me to move the blood flow using my Lymph system which does help, though some days I still just hve to get off my feet!

Our MOARK IC  website has a great article on treatments and self-help options for
vulvadynia and urethra syndrome.  If you need or want the link just pm me!

Good luck and keep us posted on how your doing!

Shelly

[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.

[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?