Pelvic Congestion/Congestive Syndrome aka PCS...long!

I just joined the site after a friend recommended it.

I was diagnosed with Pelvic Congestion Syndrome last summer after having serious pain every day - like your worst menstrual cramps - for about 6 months. I always had painful periods and was put on birth control at age 18. By age 22 I was having bad menstrual cramps with my period and for about 4 days mid-cycle. Shortly before I turned 24, it was daily pain. Sometimes I would just have a sharp twinge and it would go away in a minute, other times it would be an intense pressure and pain that would last hours. I ended up in the ER where they did an ultrasound and saw the veins on my uterus.

I went through three doctors before finding one who took me seriously and got me in 3 days later for a diagnostic laparascopy to find out what the problem was, since I have a strong family history of bad endometriosis, huge fibroids, and tilted/misshapen uterus.

He found nothing but huge veins - about 6 times their normal size. He did say this doesn't mean I DON'T have endometriosis, just that there was nothing that he could see at the moment. Anyway, I am athletic, in good shape, and have never been pregnant, so he explained to me how rare this is. My options were Lupron for 6 months or Mirena IUD to see if they helped, and then go from there.

I got the Mirena, which has stopped my periods and is a great help. I have pain every day but more like a level 2 than a level 9 and it comes and goes. The only bad thing is, I can tell it's not improving. It's holding steady but is worse now than when I first had the IUD inserted...which pretty much means a hysterectomy is in my future.

My husband has been amazingly supportive throughout all of this, and we have accepted the fact that my body probably just isn't built for pregnancy (Dr said the pain could stay the same or get worse...but not better), and are now trying to prepare ourselves for this major surgery.

I guess what I'm getting at is, from the research I've done, there isn't a whole lot out there! Some say vein embolization cures their symptoms, others had no luck. Some women who've had a hysterectomy are fine afterward, and others end up finding the problem extended to other veins, and the hysterectomy didn't solve the problem. So I'm hoping that someone here has dealt with Pelvic Congestion Syndrome and can offer me their experiences! Any and all info would be greatly appreciated, as there isn't much there!

Have you done a site search to find other threads talking about this condition? You could read through those and see what other ladies have done in the past.

Before scheduling a hysterectomy I would suggest at least a second medical opinion to determine if this is the best route for you. Seeing a doctor who specializes in pelvic pain could be helpful.

A hysterectomy is a major, irreversible surgery that is not without risks so you want to be 100% the pros outweigh the cons before having this surgery. If you do a search for Pelvic Congestion Syndrome in our Resource Database you may find some information to help you.

Sending lots of s and best wishes your way!