Any one with Pelvic Congestion Syndrome (PCS)?

I posted yesterday
https://www.hystersisters.com/vb2/sho...d.php?t=268557

Basically I had my 4 week follow up visit. My doctor (and myself) were expecting pathology to come back with a diagnosis of adenomyosis...but all they found was a single fibroid!!!

She did show me photos that she took; my uterus was lumpy and "veiny" and there were a ton of veins on the pelvic walll...my DR. said she suspects PCS and that HOPEFULLY the pain subsides ( I KNOW the irregular and heavy bleeding will).

I am pretty upset at the thought of having had a perfectly normal uterus removed. I don't know what to think and am pretty upset. I just don't understand how a normal uterus could cause me to have huge clots, irregular periods (2x per month), spotting between, back pain, leg pain, uterine type contractions, etc.

My back feels somewhat better, but now that I am getting around "that time" again, I notice it is achey again.

I could not sleep last night. I am very upset right now. I had a hysterectomy, but no real diagnosis??? Why did I do this???

I went the round of Dr's even to the point of going to John's Hopkins. I saw a Dr up there (PM me if you want more info) who did a research project and paper on PCS. He said that was my problem and wanted me to be admitted for a couple of days, do a cath and block off the veins, yadayadayada.... Well, to start with it is over 3 hrs from home so it was very inconvenient. I wanted to discuss it with my physician. We tried a non-surgical approach. I took Venastat (otc for varicose veins) because PCS is essentially varices of the pelvic cavity. I got a lot of relief from the achy/heavy feeling. I've not been totally convinced that was what it was-no indication of it in my pathology. Just a uterus 3 times its normal size. Don't know if this helps, but that's my 2 cents worth.

If you are pain free and not nearly bleeding to death each month, then I'd say it wasn't a waste! I had my TAH due to fibroids and excessive bleeding. I'm only a little over a week out and feel much better! I don't think you had a "perfectly normal uterus" removed...it was lumpy and had a fibroid...those aren't normal things. I know it's an emotional time, but being free of your pain and other symptoms can only be seen as a blessing...just my humble opinion.

Best of wishes in your recovery!

hi i had and still have severe pcs,i went through 3 embolizations,to try to eliviate my pain before going for the big hyster. but they only helped a little,when the doc opened me up not only did i have them throughout the uterus and ovaries but also in the surrounding areas,and my patholigy came back as a abnormal lining but they was not sure why they had checked for cancer and there was none,i did have a calsified mass though that they figured was left over placental tissue. but i new about my veins before surg and still was in horriable pain .my dr's also in md. that performed the surgery said that in the long run i proabily will need the hyster.because my cycles was debilitateing.i had all your same symptoms .and i'm glad that i at least have some relief after.. now i have to go for bladder and rectile repair i just found out,because i didn't get the recovery time i needed so be carefull,and take it easy. if you need to talk more please pm me..

Thank you...I am hopin that if it was PCS, that I will not have as much pain. I know it is around what would be "that time of the month" because my chest is sore, and I have a pain in my left side that radiates down my leg. It gets worse as the day progresses and the more I stand. I hope this is not an indication of things to come (ie, continuing pain).

Thank you all for your input!

did you know that your body can still feel like it is cycleing even though there is nothing left,i can still feel mine acting weird. i think it can last up too around 6 months or so,it's like your brain can't figure it out that it's not suposed to or something... there were a few threads about it a while back,i'm sure you can find them if you put in a search....i get the pain down the leg too,but it's getting better!!it used to go all the way down and then sometimes wrap around too the back of my calf..and if i would put presure on it like standing or walking it killed me..there is not very many on here that has this if you want to talk please feel free to send me a message..do you have any veins on the outside of your body?all of mine were just right there,none on the outside!!

It is good to hear that there is hope...I am PMSing now and feel like I have had nothing removed LOL. I used to get the pain down my leg, around the back...it was so bad I could not sleep on my back at night. I would wake up if I flipped and was on my back.

I had no veins on the outside, not in that area. I do have large veins elsewhere...very weird ones. Not on my thighs, but, one on my inner arm (looks like a bruise), one on my brown (people often think I have pen or something there) and a year ago I had a huge one removed from the top of my foot (it got to painful). So I definitley have some odd things going on with my veins. I am thankful that I don't have any large ones on my legs. I am just starting to see some very small spider veins on my legs...but, after 5 kids that is not too bad

Thank you so much for your feedback. Like you said, it seems like there are not too many ladies on the board with PCS. This was definitely not the diagnosis that I expected.