pelvic congestion options - worth it?

Hi! I just came to this site last week, trying to make the decision. Till a few days ago, there had been no real idea what was causing my chronic pain (about 18 years' worth) until a friend of mine sent me an article about ovarian vein reflux. I did some digging, and found a wonderful article about pelvic congestion syndrome. Right down to the very specific symptoms, this is me! While I feel relieved that I've finally found some answers, I'm wondering if the alternate options are worth looking into before the LSH-BSO I'm getting ready to schedule.

I've had years of ovarian cysts, pain, heavy bleeding, dyspareunia, doctors, tests, and surgeries. Since my cesarean/partial oopherectomy (8.6cm cyst)/cystectomies in 2001, the pain has become unbearable, prompting more rounds to the doctors and month after month of depression and pain pills. The pain mapping showed a very marked trigger point in the abdominal wall, but nothing else definitive. The 3-month Lupron is wearing off, and while not really giving me any answers (still thinking adeno is a probability), the pain has come back quickly and severe. I just want it gone and my life BACK, but having a hard time making the decision regarding fertility. Know we don't want another one now (I'll be 34 on Saturday and we have a very spirited, beautiful 2-1/2yo DD), but it's a difficult decision to make all the same.

So ... read up on ligation and embolization, and wondering if I should entertain the ideas? I'm calling the doc today, but he hasn't mentioned it -- so I wonder if he's already tossed the idea b/c of my pain areas, etc. From the article I read, they're very difficult to deal with on the right side (where most of my pain is), b/c of the vein's conection to the vena cava. The possibility of it not working, transferring, and eventually needing the hyst anyway is very real, and the possible complications don't sound nice (pulmonary embolism, coils that float away, etc.). Nevermind fertility isn't even guaranteed with the procedures anyway, and the bleeding issues would probably remain. Given that the pain is worsening, that intimacy is nonexistent/impossible, that it's involved my bladder and bowel functioning (I have joked for the last few years that I have a prostate problem), and it's more and more all the way across and on my left side ... maybe I've already convinced myself to get the hysterectomy! I've just been second- and third- (etc) guessing myself, given the finality of it all and the annoying "helpful advice" to stop going overboard with "drastic" measures from my mother and sister.

Anyone tried ligation and/or embolization for PCS? Would you do it again? What are the real complications and/or resolutions with it, and do you eventually need the hyst in the end? TIA for any advice or info. I truly appreciate it!

Hi Melvis724,

I think I may have had the embolization that you have spoken of. I say "may" because I'm not certain how many different approaches there may be to this procedure. Last year my doc did a lap to check for endo, etc. to try to see what could be the cause of my lower back pain and chronic pelvic pain. What he found out is that I have adeno and I had two huge pelvic varicosities on "my" left side. He suggested trying the embolization procedure of inserting coils in those veins prior to the hyst as it was a much less invasive procedure and could possibly give me enough relief without having to proceed with the hyst. I had to go through the procedure twice as I have very abnormal veins and they had a lot of difficulty trying to place the coils. I can honestly say that the procedure did help somewhat, however, as the adeno progresses I'm already back to the same pain levels that I was before. So now it's on to the hyst. I opted for this as I fortunately don't have the severe bleeding with my adeno like so many others. I only have a few days of very heavy bleeding as opposed to days and days of it. I have more pelvic pain and back pain than anything. I also have had cysts on my ovaries - some rather large - which have caused pain, but they have always dissolved on their own so far. I just felt it was worth a shot.

It's a relatively easy procedure - done on an outpatient basis. (I was an exception I'm told - I just had to be weird in that department!!!!) My recovery time was very easy and short - about a week. I don't feel any discomfort from the coils and am told that it is impossible for them to "float" once they are placed. The radiologist is very precise about where they are placed - and as you are only under a local anesthetic and meds to relax you, you can see everything that is going on on huge screens. (You cannot see the incision area). You can see where the coils are placed and that elminates any fears of them accidently being in a lung or kidney.

Hope this helps you with your decision. It's always so tough to try to sort out what you should do or not do. Be sure to discuss it with your doc! Like mine, you could probably go talk to the radiologist and they can show you exactly how the procedure is carried out and give you some idea of what kind of success rate you can expect for your individual circumstances.

Best wishes and good luck,

Susan

Hi Mel, I am so sorry that you have had so many years of pain and understand you want to find a solution once and for all. It looks like you have had many procedures but really not much relief. I assume you probably spoke with your doctor already and hope he provided some more insight re embolization to help conquer PCS. If he recommended a hysterectomy and you still have doubts, please consider getting a second or even third opinion which may better help you come to a decision correct for you and your problem. Please let us know how you are doing.
s, peggiesue

Just moved this from Pre-Op....