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I've had female issues for as long as I can remember. I've had several surgeries, two resulting from cesarean section, another from a myomectomy to remove a large fibroid that led to a miscarriage and dnc, a hysterectomy, a bilateral oophorectomy, which led to my current condition, ovarian remnant syndrome. The doctor who performed the oophorectomy was a gynecologist oncologist so I felt I had sought the best possible doctor to perform the surgery. I had been diagnosed with complex ovarian cysts. Because I'd had so many surgeries and past issues, my doctor felt it best to perform the surgery. Three months after the surgery, I began feeling severe pelvic pain. My doctor said it was all in my head and that I should tell my husband to be more gentle with me. He treated me as though it was my fault and did not want to treat me further. It took me going to see several doctors before finally being diagnosed with ovarian remnant syndrome. No one wanted to perform the surgery. I finally did have surgery 7 months later to remove the remnant which had become quite large. I had surgery at the Mayo Clinic because they were the only hospital with some information and were willing to treatment. I was told that the surgery was an aggressive one and that the remnant tumor had attached itself to my bladder and vagina. Unfortunately, shortly after having the surgery and being released, I was admitted back into the hospital in my home town. I developed abscesses and was told they were inoperable because I had developed several which could not be drained because of where they were at (I was told I could bleed out if they tried) and was placed on a very strong concoction of antibiotics administered thru an IV. I was in the hospital for 10 days and was released with a PICC line for an additional 18 days of treatment. It's been a little over a year and I've continued to experience severe pain in my pelvic region and have stabbing pain caused by sitting. Unfortunately, there doesn't seem to be much information out there about this condition and wonder if anyone else has written in about this condition. I can't help but wonder if after reading about Addison's disease and some other endocrine conditions mentioned on this site, if maybe there's something more I need to look into since some of the conditions mentioned seem so close to symptoms I've been experiencing. I'm having a difficult time finding an endocrinologist in my area that treats these types of diseases. Most only treat thyroid and diabetic conditions.
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Hi fed-up and welcome to EmpowHER -
Ovarian remnant syndrome occurs when ovarian tissue is left behind following surgery to remove both ovaries. It's difficult to find much information about this. The Genetic and Rare Diseases Information Center of the National Institutes of Health provides some basic information, but most of the information I could find in a search was clinical content directed at physicians. I could not find any support groups listed for women who have this.
As someone dealing with a rare condition your best bet may be to seek support from an organization that supports women with a more common condition, such as an ovarian cancer support organization. While the conditions are very different, the members are likely to be very familiar with the best (and worst) medical providers in your area and beyond, and be able to help you in many different ways.
No one should be alone with a rare health condition. I am glad you reached out to us and I hope you will continue to reach out to others. Does this help? Hope so!
Best,
Pat
September 23, 2014 - 7:02pmThis Comment