Pelvic Congestion... anyone familiar?

I've had a diagnosis (after visualization during surgery) of pelvic congestion. Does anyone know much about that? Some say it's a "garbage pail diagnosis" and others say it's a symptom of adenomyosis or endometriosis and it's like vericose veins.

Is this something that is cured by a hysterectomy (the "congestion" is on my uterus)? One doctor told me that the endometriosis could be microscopic (explaining why it wasn't seen during the surgery to remove the ovarian cysts) or I could have adenomyosis and that's another reason they didn't see anything during surgery. I'm really curious what others have experienced like this... can anyone tell me anything based on their experience?

Thanks in advance!

what r your symptoms???

I have had a lot of pelvic pain, especially on the right side. It has gotten worse and more persistent over the past year or two. I have abnormal bleeding, cramping between periods (as well as with periods), ovarian cysts (a couple have burst), and I feel like I have a bad case of the flu every time I have my period.

I also have a vaginal discharge and itching (yeast cultures are repeatedly negative), but not sure that's related necessarily. My doctor said that could be related to the cysts, but who knows.

When I had surgery in April to remove the cysts on my right ovary, the doctor expected to find endometriosis. She had a baby about that time so another dr. in the practice did the surgery. She said she didn't find any endometriosis, but she showed me pictures of my uterus and said I have a bunch of extra blood vessels on there that could very well be causing my pain... and she called it pelvic congestion. I asked my regular dr. there about it, and she said it's actually a symptom of endometriosis. So now I'm even more confused... since she said they didn't find any of that during the surgery.

Anyway, any info. that anyone can give me based on your experience is very much appreciated. Thanks!

Hi,
I had my TVH on March 30th of this year. After the surgery my doctor told me I had Pelvic Congestion Disease, which is basically varicose veins on the uterus. My uterus was enlarged, globular and shifting to the left side. I had a lot of burning pain before the surgery, I actually felt like I was on fire some nights. I also had endo, fibroids, adenomyotic cysts and finally prolapse. The good news is, the disease is completely cured by the hysterectomy, since the uterus is gone the problem is gone. I was concerned it could affect my tubes or ovaries but the doctor said no. I also asked if it put me in a higher risk for varicose veins in my legs, and she said there isn't a link. I haven't heard that it is a symptom of endo, but I wouldn't dispel that either. I wish you the best of luck. I know what you are going through is very painful, physically and emotionally. It can be so draining to just want answers, a definitive diagnosis. To keep hearing it could be this or it could be this can be so frustrating so above all, I wish you peace of mind that you are doing the right thing. You're in the right place, this site is a fountain of information and support.

Nancy

Ah, thank you so much! I'm glad to see someone knows what I'm talking about. And I'm glad to hear that the hysterectomy will cure the problem. It is definitely frustrating to search out the correct diagnosis. I've had other health problems that have been just as (if not more) frustrating to diagnose, so I'm definitely ready for some relief.

I was "diagnosed" with pelvic congestion syndrome a little over a year ago - very similar symptoms landed me in the ER where the ultrasound showed huge veins. Got a lap which showed...more huge veins and nothing else, but my doc at the same said same thing - just because he didn't see endo doesn't mean it's not there, but veins are often a symptom and not a diagnosis. Well, I got the Mirena which has stopped the bleeding but the pain is back with a vengeance, and I've seen a few new drs who all believe I have adeno and that's why the veins are enlarged (and why the other dr didn't see anything with the lap). So, next week I'm having a hyst, which should get rid of all my issues. My symptoms are like yours - cramping every day, sharp stabbing pain sometimes, worse on the right side, worse with sex, worse with vigorous exercise, etc etc. Best of luck! Look into an endo specialist if you can - that's what I did to finally get a diagnosis and a treatment plan.

For almost 4 years now when I'm on my feet for even short periods of time or walking slowly through the grocery store or mall, I will get a sharp stabbing pain in my lower right pelvic area. If I can't get off my feet asap, it gets really bad really quick. I've come close to sitting down in the middle of a store and/or parking lots several times. Since I don't have a problem when power walking, doc #1 said, you probably have pelvic congestion syndrome which would probably be relieved by a hysterectomy (which I wasn't ready to do at that point) or menopause. The pain will go away when I can sit or even better lay down. Then changed to doc #2 cuz of insurance issues, she actually snorted (I won't be going back to her!) when I mentioned pelvic congestion syndrome. She told me to lose weight and get support panties! But then doc #2 did a endo biopsy and found complex hyperplasia so she sends me to doc #3. So now I am scheduled for a LAVH on Sept. 16th. When I told doc #3 about my pain and what docs#1 & #2 said, he was up front with me and said that since he didn't know the cause of my pain, he didn't know if my hyster would help or not. Then he pulled the rug out from under me when he said "It could make it worse"!

Besides being painful, it's very frustrating! I'm forever going off and leaving DH behind in Wally World cuz he wants to go up and down every isle looking at every item! So we get two baskets, I haul it through grabbing what I need while he strolls around. The little ladies at church put me to shame in the kitchen! I have to sit down and watch them finish up my tasks. I can no longer go to the rodeo, art fest, etc. So I'm hoping and praying that my hyster will solve my problem so I can join family outings once again!

Good luck to both of you Foxpup and Toria!

Here's to hoping that all our problems will be resolved with our hysters!

I got diagnosed with congestion years ago. Unfortunately, I never took it seriously. My dr told me it was a side effect of my endo and adeno. Since I wasn't mentally prepared to give up my uterus, I just ignored the diagnosis. Its been a lot of years of unnecessary debilitating pain because of my stubbornness.

Good luck with your treatment decision.