Help for recurring ORS

[littletree]

I had my uterus removed in 1999. In October 2006 I had both ovaries and tubes removed due to a complex ovarian cyst on the left side.  They removed to right as well, so the same thing would not happen later.  Two weeks post-op I still had the same pain in my back and left leg that I originally had.  Some pain in the left side but not alot.  Once a month at the same time ( I have charted it) I feel like I'm  having  a period, or cysts are rupturing.  I had mri of my back, came back normal, went to urologist everything normal, was told I had IBS because of bowel habbit  change after surgery.  Doctor basically told me it was in my head.  Twelve months later if found another GYN ( after seeing 3 others in between). He did CT found an ovarian remnant on left side.  Had surgery day before Thanksgiving 2007.  Four weeks post-op I had the same back and leg pain, and period feelings, some pain in left side. Did CT, found two cysts in different locations on left, scheduled surgery for 2 months later by then the cysts were shrinking.  Put off surgery to monitor the cysts. Had another CT scane cyst were getting smaller, still feels like having period, more like the cysts are rupturing every month at same time. The Dr. put me on clomiphene 100mg for ten days.  I had severe pain the first two days on the drug, then it went away until day seven on the pill when I had severe pain in back,legs and lt.side for three days.  Went in for TVUS and the lower cyst was not there. Different Dr. in scan he did not check the upper spot.  It seems I have alot of pressure on the left side and on my bladder and retum.  I do have a slight rectocele I have been told.  Also after last surgery I have had some bladder pain, wet to urologist who treated the problem, seems some better. What should be done now?  I am in pain every day, it is dibillitating.  No one seems to understand how much it hurts.  Dr. is thinking of pain management, but I don't see how that will help the matter. By the way I have on menopausal symptoms at all.  FSH levels and estrodoil levels are menopausal but they were before the surgery to remove remnant as well. Any advise of any kind would be helpful. I am so frustrated at this point, because I feel there is still something there, they just are not catching it at the right time yet.  Thanks.

[littletree]

Thaks for the comment.  I was beginning to wonder if anyone was going to say anything.  It will be 2 years in May since I started with this pain.  It took a year after original surgery to remove ovaries before I could find a GYN that even considered ORS.  He did the surgery to remove it in Nov. 2007.  Now he doesn't  seem to want to think if could be ORS again.  I have had 4 CT's in the past 6 months.  The cysts were smaller with each, but I can feel when they rupture, scans were done  about 1 week after.  My worst pain is at the same time every month from 16-20 or 21.  The first remnant I had was on my ureter as well, it was caught before it grew around, but since I have had some bladder trouble.  The cysts they are looking at now are midway from top of hip to pubic bone, and the other lower on iliac artery.  The pain is still the same since from beginning. I can feel alot of pressure in that side.  Dr. wants to do pain management and wait.  Any idea what pain management includes.  Another GYN at same practice suggested Lupron, said if it stopped pain it is most likely a remnant.  Due to how bad my ovary was stuck to me it is hard to tell whats going on.  And my current GYN doesn't know exactly where if was attached.  Is this caused by negligence?  My first GYN that did the original surgery basically said it was all in my mind and not his fault.  Thaks again.  

[fungirl1011]

Let me start by saying you are not alone in this.  I too have ORS.  I am going to be seeing a new gyn on May 20th to schedule surgery.  I have been having these problems since my last ovary was removed 2 years ago.  Thank goodness I have a great pcp that listened and did a CT and it showed a 4.5cm cyst.  I can not have tvus because of where the remnant is.  When I had surgery 2 years ago, I had my ureter tube wripped out of my bladder and where they had to remplant it in my bladder is where my remnant is.  Therefore, my urter tube "hides" the remnant till a cyst developes.  Now the cyst I do have is completely wrapped around my urter tube.  It will be a tricky surgery and it is unlikely they will be able to get to the remnant without damaging the urter tube further.  

I know what you mean when you say you live in pain everyday, as I do as well.  I have just learned to deal with the pain and now it is at least bearable.  I am wondering if the doctor can put you on a different pill.  My doctor has tried that, but it has never worked for me.  Pain management may not be a bad idea.  What does your doctor have in mind?  Unfortunately, till they get all of the remnants out you may deal with this on a regular basis (at least I have).  Since  you have been charting your pain, is your "cycle" on a regular schedule?  If so, maybe you can schedule a tvus or CTscan for when your period would have been.  Have you had another CT scan since the cysts began to shrink?  Maybe you can request another one and see where things stand.  There are some other wonderful women who have the same thing.  Hopefully they will be along soon and can offer some more advice.  If you ever want to chat or just vent, feel free to PM me anytime.  Please keep me posted on what you find out.  

Hugs,
Kasie