Endometriosis, two years post hyst, kept ovaries

Sisters!!! It has been over 2 years since my vag hyster (kept ovaries) and I desperately need your HELP!! I have been doing great physically and enjoying no more awful, painful periods. Thursday morning I awoke with such pain around my belly button that I was doubled over. Thinking it may be a bladder spasm (I'm an RN and thought the location was bladder related). I crawled to the potty and peed but no relief. I crawled back to bed where I spent the wole day doing nothing. By evening the pain had resolved a bit and I was thinking "must have been something I ate." At 6am the next morning I awoke with the same pain,still around my belly button but more towards right side, sweating, clammy and asked DH to take me to ER. ER doc couldn't even exam me due to such pain. A stat CT showed a 5cm LEFT ovarian cyst and my white count was elevated. A surgeon saw me and did a sono that showed only the cyst on the left that looked like I was actively bleeding into. He said he wanted to do a laproscope to find out where the pain was coming from but may not be able to take the pain away. He said he would also take my appendix out. Well as soon as he put the scope in he said I was full of ENDO implants!!! I had never ever been diagnosed with endo. I had the hyster for excessive bleeding. He said the implants are evrywhere and there was a large cluster near my appendix mimicing appendicitis. I am seeing a gyne Friday but I want information before I go. I do not want to take the pill. What are some other choices?? I appreciate any info you can send my way. Thanks!!

I am sorry about your pain and diagnoses.

Unfortunately, endo can be microscopic in its earliest stages, so it can be undetected as yours must have been. As you have retained your ovaries, your own estrogen has been feeding the endo, allowing it to spread and grow.

Surgical excision or vaporization during a lap are both options for removing as much endo as possible to alleviate your pain. There are medications to treat endo and some women benefit from using progesterone to treat their endo. Is there an endometriosis specialist in your area, or a reproductive endocrinologist who treats women with endometriosis? I highly recommend getting more than one opinion on what your options are.

Have you had an opportunity to read through the Hyster Sisters' Endo/Adeno Resources? Knowing everything you can about endo so you can discuss your concerns and situation with your dr will help you as you make the best choices for you.

As of yet, there is no cure for endo, so knowing about the available options and treatments and how they might affect you is very important.

My endo was discovered during a lap to see why I had been bleeding for 2 years. My hyst followed my lap by a few weeks. By keeping my ovaries, the endo left on my bowel walls is being fed by my own estrogen, but I had to make the best choices for my overall health.

Many best wishes to you as you sort through as much information as possible about endo. Feel free to search the site and read through other threads about endo and what ladies have done to deal with this disease. If you have an opportunity, the Endo/Adeno: Stories of Triumph over Pain can offer some encouragement and hope.

in there and keep us posted!