Diagnosed with PCS during lap

I had my first laparoscopy on 1/24 to get out endometriosis...well the doc went in and found very little endo but found that I have pelvic congestion syndrome...anyone every had this done? I have never heard this and I am looking online now to reaserch treament..I have been the lupron route and it did help some about 80%...still had issues in the bedroom even with lupron.
So this leaves me where now?
so frustrated
Jennifer in Japan

I am so sorry you are frustrated but I do hope that with a definite diagnosis you will be more able to find the right treatment plan for you!

Basically, PCS is varicose veins in the pelvic and groin areas. It can depend on exactly which veins are involved as to which treatment option might be the most helpful for you.

We do have some information about pelvic congestion syndrome in our Resource Database and you might find this link helpful: http://www.veindirectory.org/content...n-syndrome.asp

Do some research and then sit down and talk to your doctor about all of your questions and concerns!

I went in and had my hysterectomy because of what wew believed was Endo... just like you, the doc found very little endo but severe Pelvic Congestion, I had huge veins and tons of them... since the surgeys my pain is gone! I wish you the best of luck and hope that you find the right treatment for you.

I just had a lap done yesterday and doc found very little endo but found that I have PCS...what gives? lol
my other options are lupron again and to see a special radiologist which isn't gonna happen here in Japan.
Why are there no long term treatments for this disorder? I don't have access to a special radiologist.
Just looking for support
jennifer

I don't know why there are no long term treatments. However, I do know this. My symptoms have gotten better....by God's grace. I realized that my legs would have pain when I would go without drinking water. The reason for this is, our blood thickens when we are dehydrated. So once I feel my legs ache, then I know to get water in my fast because the pain moves up my leg and into my vulvar region.

I hope this helps your symptoms because it helped mine. The surgery is painful and if increased water consumption helps then maybe you won't need treatment.

I never put the two things together (pain/swelling in legs + dehydration) until I read it in the Bible. In the Old Testament it states swelling/heaviness would occur with dehydration. The Bible helped me more than the doctors. Thank you Jesus!!

I am not a person that gets thirsty and it is a chore for me to drink water.

Hope this helps,
Cindi

Very interesting Cindi~I wonder how this affects you if you have a blood clotting disorder? My doctor is wanting to do another round of Lupron which helped about 80% but I was not crazy about the side effects.
Can't take hormones so my options are very limited. I am also at a military base in Japan and those resources are limited too.

OK, so, what a relief to see people chatting about pelvic congestion. I was finally diagnosed after going to emergency twice 2 months ago. My doctor and gyne thought very non-chalantly that I probably had endometriosis and have done nothing. I had 2 ct scans 8 days apart that very clearly showed it. Now my gyne says that he should preform a laporoscopy to "rule out" endometriosis before he treats me. WHY?? I can't handle it anymore. I am on a continuous pill and he suggested lupron.....I feel that I want a hysterectomy and wonder why they wont....grrrrrrr Im 40 and my youngest child is 10. I call in sick at least a couple of days a week and need to be fixed.....

oh, PS, the laporoscopy will be in 6-10 months from now...

First period since the lupron back in Sept and OMG~I could barely walk yesterday...Since my Lap on 1/24 it seems the pain isn't any better. I can do two hours of cleaning and I am taking 2 days to recover. I have three children ages 9 and under...this can't continue...I did see my family practice doc for another issue and she mentioned acupuncture and said there's a good success rate with it helping my pain. It's pretty much my only option at this point...Don't think my GYN will give me a hysterectomy.

OK, that's horrible. How was the lupron? My gyne suggested it and after looking at the list of side effects I don't think I'll do it! Or did it really help? What did the lap show them? Do you have endometriosis too?

I don't know why some gyne's are so hesitant or dead against hysterectomy's. They truly don't understand the daily pain apparently. I just don't get it. Hope you feeling a bit better....

gg