Hysterectomy/Ovarian Remnant Syndrome/Chronic Pain

From: Ana G. (XWINGANA@aol.com)
Fri Jul 25 14:44:55 2003


I'm sorry that this post is going to be a long one, but I'm hoping for assistance. Here is my story:

I'm a 40 y.o. female who had the following medical history prior to a hysterectomy in July 2002:

3x C/Sections (two low cut & one up and down cut) last one w/tubal ligation Appendicitis Laparoscopic gallblader removal & lysis of severe pelvic adhesions Diagnosed with PCOS, symptoms severe Monthly problems with ovarian cysts Abnormal uterine bleeding unresponsive to birth control pills & endometrial ablation Morbid obesity

In the beginning of July 2002 I had an abdominal hysterectomy for abnormal uterine bleeding that would last 8-15 days per month that would cause constant loss of sleep due to the need to visit the porcelain god every 30 minutes all night along and all day. The physician insisted on leaving my ovaries, even though I wanted them removed. He said if they were normal that he was leaving them due to my age, which was 39 at the time.

What I was told the day after my 3.5-4 hour abdominal hysterectomy: 1. The adhesions were so severe that it took well over an hour to cut through them and find my uterus. 2. He had never seen such a significant blood flow to the pelvic region as he encountered with me. (He had been trying to convince me to try ablation again prior to hysterectomy and admitted that after seeing my blood flow, it wouldnt' have worked) 3. He left the ovaries because of my age.

End of July 2002, readmit with a large ovarian cyst, ovarian torsion & chemical peritonitis visible on transvaginal ultrasound. The GYN from the practice on call sent me to the ER & based on ultrasound results was ready to take me to the OR to remove the cyst and the ovary, and I told her to take both. She called her partner, my GYN, and he said to hold off. The torsion corrected itself overnight and I spent two days in the hospital. At this point my doctor began the regular habit of berrating himself for not taking the ovaries out during my hysterectomy. Every time I saw him after that it was one of the first things he said to me, over and over again. It made me angry.

August and the beginning of September I continued to have severe problems with recurrent large cysts & peritonitis. He started me on Lupron & I returned to work still in pain.

After three months on Lupron with all it's horrible side effects to which no help was offered, I was taken off Lupron and by mid-December I had developed a large ovarian cyst yet again. I called the GYN on-call over the weekend and she sent me to the ER for evaluation and an ultrasound. The ER doctor gave me a shot for pain, did an internal examination, told me I had a large immobile ovarian cysts and to go home and follow up with my GYN in the morning. No ultrasound was done.

The next day I called my GYN's office and had an ultrasound at the hospital where I had been the night before and I had to push to have the ultrasound. I was in severe pain. The ultrasound tech was shocked when she saw how big the cyst was and immediately called the radiologist, who was also shocked and called my GYN. I was told to report to the GYN office the next day at 9 am, still not given anything for the severe pain. Bilateral Oophorectomy was scheduled for 12/26/2002 (9 days later) even though I begged to get in the week before because I couldn't stand the pain. I went home angry, frustrated and in pain.

The next day I felt another cyst beginning on the right side, to accompany the cyst on the left side which was getting bigger and the pain more intense. I couldn't sit up at work for more than an hour and had to go home.

The next day the same thing happened, I couldn't stay at work due to severe pain and now a fever. I called the GYN and he managed to schedule me for surgery the next day, Friday.

I had the bilateral oophorectomy, where again he had to struggle through adhesions causing the abdominal surgery to last over 3 hours yet again. I was happy, but it wouldn't last.

The next morning, my GYN comes in to see me at the hospital looking very upset. Turns out I had two cysts, one on each side, with the left side being the size of a nerf football and the other the size of an orange. Both cysts adhered everywhere, abdominal wall and intensively throughout my bowels. After over an hour of bowel scraping they couldn't get any more out. I had remnant ovarian syndrome and had to immediately go back on Lupron.

After about 3 months on Lupron every 28 days I began getting cysts around the 24 day mark before my next Lupron shot. I was frustrated because the GYN didn't know what to do at this point. He tried to give me the Lupron every 21 days. At this point I called TAP Pharmaceuticals and they said because of my weight that Lupron wouldn't work because while the lupron would suppress the estrogen in the ovarian tissue, it wouldn't supress the estrogen produced by my adipose tissue. And they were right.

Needless to say, I am now off Lupron and with a new GYN. I am a chronic pain patient who gets multiple, cyclic ovarian cysts. I have had severe bowel problems since my surgery in December, and I have severe adhesions. I am not on HRT because there is more than enough leftover adhered ovarian tissue that I have not gone through menopause. Does anyone have any advice on where to go next with this? I'm really miserable and frustrated.

Thank you for reading. Sorry about the length.

--
Ana in PA

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