Ovarian Vein Syndrome/Pelvic Congestion
I had 3 good sized babies in 4 years. After the birth of my daughter, almost 3 years ago now, I had continuous lower abdominal pain. I have a history of mild IBS so I assumed it had gotten worse. Everyone told me it was just the stress of raising 3 small children that was getting to me. I also noticed increased problems with constipation. Finally after 6 months of this I went to a doctor, who sent me to a GI specialist. By this point I'd lost a good bit of weight from not feeling well, and was also feeling quite tired. A GI workup didn't show anything to pinpoint my particular pain, but we continued in that direction becuase that was assumed to be the nature of my problem. After trying several medications, fibers, and treatments, my GI doctor ordered a CT scan because he could not explain my continuing pain. Something "odd" was found around the area of my ovaries, so he sent me to a GYN. He was concerned about the possibility of ovarian cancer, given that I had many of the "signs" (bloating, pain, weight loss, fatigue, etc) and the "odd" CT scan. He wanted to do laproscopic surgery to rule it out for sure. He also suggested that pelvic congestion could be the problem, and if so, removing my uterus would take care of my pain. At the time I did not understand much about PCS and so agreed. He took my uterus vaginally in Aug 03. I did feel better in the pelvic area and intercourse was no longer painful. However, I continued to have increasingly worse pain up and down my left abdomen, until it literally felt like my kidney was hurting! Pain will also go down my left leg and stop me in my tracks. I was sent back to the GI and then back to the GYN and then eventually made to feel like a crazy person! I wasn't seeking drugs, in fact I refused to take any pain meds until someone could tell me what was wrong with me! I learned more about PCS on the internet and must say that ovarian vein syndrome is a MUCH better name. I found myself a new GYN who would actually listen to me and asked whether that vein could still be the problem with me and he said absolutely YES! He said removing the uterus alone would NOT solve the problem, and that the symptoms I was describing would coincide with the vein problem only having gotten worse. I had a venogram and sure enough the left ovarian vein is huge, all the way up to where it connects to the kidney. I am to have embolization done, but we are not sure if it will work since I've already had my uterus removed, there might not be adequate vessels there for the ovary to reroute its bloodflow. If not, it will have to be removed in more extensive surgery. So my word of advice - don't go to a knife happy doctor! Embolization is the first treatment of choice among experts in this field, so find someone who knows something about this before you go letting a GYN operate on you. And don't let people treat you like a hypochondriac if you are in pain! I have been positively debilatated by this, it is awful some days, and still I was made to feel by some like I was making it up. I hope this condition increases in awareness and SOON - no one should have to suffer as long as I have.
From:
Michelle Mc - ecmmbm@carolina.rr.com
