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Pelvic Congestion Syndrome-bleeding question Pelvic Congestion Syndrome-bleeding question

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Unread 01-03-2012, 06:48 AM
Pelvic Congestion Syndrome-bleeding question

I was formally diagnosed with pelvic congestion syndrome right before Thanksgiving. I had a laparoscopy to look for endometriosis, but instead it showed several large varicose veins wrapped around my uterus. I have been suffering from pelvic pain since I was about 18 and had a diagnostic scope then, which was clean aside from minor adhesions and have had a major increase in pain/abnormal bleeding over the past year or so.

Since the recent scope, I have met with my GYN of 12 years (who did the scope) and another GYN for a second opinion and both concur I will feel much better without my uterus. My GYN says lose the ovaries and #2 says get more information and possibly keep one since I am only 30. Both are confident that the hyst. will alleviate a significant amount of pain since it is the uterine veins that are affected. I also have IC which has finally started to respond to Elmiron, so the thought of having one type of pelvic pain gone is a big deal!

My question for you fine ladies is this: for those of you who have PCS diagnoses, do you have abnormal bleeding issues in addition to pain? I have been on continuous birth control for several years from to minimize bleeding, but have started having issues with clotting episodes (sometimes even between periods) and nagging low-level bleeding all month. My doc says to stay on the birth control pills while I decide about surgery. I don't have children, don't really want any, but I am pretty young so he's emphasizing that the uterus goes only when I have had enough and am certain about whether or not I want kids.

Another question: what the heck are you doing for pain while you wait for surgery? I wake up with my pelvis throbbing but it's not to the point of being unbearable. However, with any sort of physical activity, standing for long periods, or prolonged walking it escalates to the point of nausea and I am miserable by every afternoon. Naturally, I am a teacher, so this makes my job "challenging." Heat helps a little, laying flat eases up the cramps, but I still hurt! I have an autoimmune form of arthritis so this lack of activity is killing my joints. I take high dose anti-inflammatory meds for the joints and it doesn't even touch the pelvic pain. Ideas?

Thanks to anyone who can offer ideas or support-it seems like lots of women on here over the years have dealt with this but there's hardly any good information online about it aside from embolization, which I was told by both docs is not an option for me.
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Unread 01-03-2012, 07:17 PM
Re: Pelvic Congestion Syndrome-bleeding question

I was diagnosed over the summer with PCS and had my TAH on Oct 26th. THE. BEST. DECISION. EVER. I've had female issues since day one it seems like. I too had a lot of bleeding issues, was on many diff types of bc pills over the years, etc. And for the pain, I'd been on percocet off and on (mostly on) for years!! I also had horrible pain in my legs, which I never related to my female issues until I was diagnosed with PCS. I say a vascular specialist and she thought the 2 could be related, so I opted to treat the PCS first. ANd I'm glad I did... since I woke up in recovery, I have had NO leg pain... and it had been about 9 yrs!!! Amazing!!!! If you are okay with not having kids, I'd go for it. The sooner the better!! THe recovery is long but SO worth it. I have never felt better.... even dealing with a weird infection at 10 wks post op.
Good Luck!

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