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Pelvic Congestion Syndrome Pelvic Congestion Syndrome

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Unread 02-27-2009, 07:36 AM
Pelvic Congestion Syndrome

I was told by my doc, after an ultrasound, that the veins in my uterus are congested and swollen. However, I have never been pregnant and it seems as if this is something that occurs after pregnancy. Has anyone else been diagnosed with this and never been pregnant?

I also have fibroids and probably adenomyosis. I have been talking with my doc about a hysto and she is on board with it. I had a uterine biopsy on Tuesday, still waiting for results, and an MRI scheduled for tomorrow. I am looking forward to getting more answers as to what is causing all my pain and bleeding.
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Unread 02-27-2009, 02:53 PM
Pelvic Congestion Syndrome

From what I am told that pelvic congestion syndrome is when the veins in and around the uterus are congested and swollen, like you said. It doesn't necessarily mean it always occurrs after pregnancy. Why do some people get varicose veins and others don't? That is how the dr put it to me. I had endometriosis, adenomyosis and pelvic congestion syndrome. I was in pain and bleeding all the time.

Good luck to you with whatever decision you make regarding surgery.

Unread 02-27-2009, 04:33 PM
Pelvic Congestion Syndrome

Greetings! WOW, there is a name for what I have! For years... since before 1994! I have had this... in 94 my ob/gyno went in and took out endo, cut the ligaments and tendons on the uterus, moved things around and caterized alot inside... I had pain so bad I could not stand, pee, move or breath! I was that way for over 6 months... not to mention a case of yeast infection that would not go away...They also had to on the outside of my body caterized me. There was a doctor who was going to do surgery and cut off my vulva and outer lips... and the clit... I didn't go that far, but not until today have I seen anyone who had this.... I started using All free and clear to wash my undies, NO POP or wine or alcahol since then, no fruit juices, very little breads, anything that could get the yeast going... NO antibiotics, I would almost die before taking them because the yeast would be so bad... and getting a doctor to RX for that is imposible... It takes 12 Diflucan pills for me... 12! most women one.... I had my TAH and ovaries and cervix removed on 2/18/09. DH and I have said we hope this takes care of all of the pain in the crotch that I have... I am so glad I found this thread... Thank you
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Unread 02-27-2009, 07:11 PM
Pelvic Congestion Syndrome

I am going to have to talk to my dr about this when I go in for my post op next week. I didn't even think to ask pre-op about any of these symptoms that I experience to. Full swelly vagina feeling. Sometimes puffy after intercourse. Does having the hysterectomy get rid of this?
Unread 06-01-2009, 09:57 PM
Re: Pelvic Congestion Syndrome

I had PCS and on 09/26/08 I and a vaginal hysterectomy with ovaries remaining. Recovery was not bad, I was just sooo tired. Now to tell you the best part. I can pick up my daughter. I can make love with my husband (was not sure if that was ever going to happen again). I have not taken ONE narcotic since two weeks after the surgery. My quality of life has improved more than I can tell you.
Unread 06-16-2009, 11:04 PM
Re: Pelvic Congestion Syndrome

I'm not sure if anyone comes on here anymore, or anytime recently, but I thought I would give this a try. Two weeks ago I started having severe abdominal/ pelvic pain. I went to my OBGYN and he said I had a ruptured cist and sent me home offering me pain meds. He said 7-10 days it should be gone. The pain got so bad I had panic attacks. I went to get a second opinion and saw a naturalpathic doctor. She sent me to have ultrasounds done blood work and urine tests which all came back normal. I felt like everyone thought it was all in my head. Today, I had a CT scan today and was told I have Pelvic Congestion Syndrome. My doctor says she needs to look more into it.

I did read online that sexual intercourse can be painful and then i realized that thats what happens to me. I have had extreme pain and it actually has effected my husband and my intimacy but I never thought it was anything besides maybe the outcome of having a vaginal birth.

We want one more child but I already had a molar pregnancy in 3/07 and ended up having uterary cancer from that and I had chemotherapy. Then had a normal pregnancy and had my first born son in 6/08. Now it is 6/09 and I am told I have this and that hysterectomy is probably the best bet but I have two concerns: can i carry a second child after having this and if I have a hysterectomy will my intimacy with my husband never be the same as before I had this PCS? I'm going to be seeing a vein specialist probably coming up soon. Anyways to soothe the pain besides prescription drugs?
Unread 06-17-2009, 07:13 AM
Re: Pelvic Congestion Syndrome

Dear Fallen Star:

Welcome to this site. I hope you benefit and enjoy all wealth of information it has available to you. I am very sorry to hear about your dilemma. If I were in your shoes I would find myself a really g ood doctor that specializes in ob/gyn oncology and maternal fetal medicine especially if you want to have another child. Seeing that you just had a baby I would assume that it is safe for you to have another before a hysterecomy. Only you and your dr can make that decision.

I had PCS and my drs told me that they think pregnancy is what causes it because of the increased size and weight of your uterus it causes the veins around it to dilate. It makes sense. I had my surgery for more than one reason. I had severe endometrimosos, adenomyosis, PCS, ovarian cysts the size of plums and constant severe bleeding.

I hope this helps you and I pray that you find the right dr and make the right decision.

Unread 07-01-2009, 07:34 AM
Re: Pelvic Congestion Syndrome

Fallen Star,
I have found that the only way to relieve the pain besides pain meds is to lay flat and elevate your feet for long periods of time. With kids I've found that's very difficult. I lay down, prop my feet up with a bunch of pillows and a few minutes later they need me for something.
I just had my third embolization, I found a great doctor in central/northern CA. I had a hysterectomy in 8/08 and it did not help my PCS whatsoever. If you need the name of my new doctor (an interventional radiologist) please PM me, as many OBGYNs know nothing about PCS or how to treat it.
Unread 07-01-2009, 09:21 AM
Re: Pelvic Congestion Syndrome


try googling "vulvar pain" there are many issues surrounding that area, maybe soemthing you find will shed some light.
Unread 08-06-2009, 05:17 PM
Re: Pelvic Congestion Syndrome

What made you go through the embolization so many time? The Dr. told me if it didn't work the first time it would not work and he also said a hysterectomy would not work. No one seems to have an answer and i am so deperate for any help? Not to mention some Dr. do not even believe this is a disease . I saw a urogynocologist and he examined me said i can't seem to find any problem them he looked at my MRI all he said was OH!!! This is a problem and many women are suffering . No one seems to know what to do. or do they just not care because it's not a big money maker.

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