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Q: 

Endometrosis which has been diagnosed am 40 and have had hysterectomy and they left the overies 2 years later I now have pain?

By Anonymous March 9, 2010 - 4:30am
 
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I am not sure what to do, should i go back for more surgery, no Uterus left and now have more pain near my overies.... They had problems with removing my uterus as it was stuck to my bowels... they did say that my overies where in a bad way but they did leave them as i requested it.. now 2 years later i still get the pain like i need to walk slowly and cannot pass bowel...any suggestions what to do??? please

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Anon,

Welcome to EmpowHer, and thanks so much for your question.

I too had endometriosis and I know exactly what you're going through. I had two surgeries two years apart, and I believe yours is worse than mine was.

So when you had your hysterectomy, they left your ovaries and the endometrial tissue that was around the ovaries, is that correct? I am assuming that you wanted your ovaries left for the hormonal properties, right?

When they said that your ovaries were "in a bad way," I am assuming that you mean there was a lot of endometrial tissue around them?

Because you are still ovulating, your ovaries are still signaling your body (with hormones) that it is releasing an egg. The endometrial tissue that was left around your ovaries is still getting these hormonal signals and that it continues to grow and give you problems since it was not all removed. Hysterectomy doesn't necessarily "cure" endometriosis; in fact, a Johns Hopkins study showed that 62% of women who kept their ovaries had endometriosis pain later, and 31% needed a second surgery.

In women who also had their ovaries removed, only 10 percent experienced pain from endometriosis after surgery and less than 4% needed a second surgery.

Here's one page that talks about endometriosis after hysterectomy:

http://surgery.about.com/od/aftersurgery/qt/EndometriosisHy.htm

And here's what the Mayo Clinic says about it:

"Although uncommon, endometriosis can recur after removal of the uterus and both ovaries (hysterectomy with oophorectomy), if you're taking estrogen therapy. Endometriosis is a painful condition in which a type of tissue that normally lines your uterus becomes implanted outside your uterus, most often on your fallopian tubes, ovaries or the tissue lining your pelvis. Endometriosis needs estrogen — which is produced primarily by the ovaries — to persist. If you have your uterus and both ovaries removed, endometriosis pain usually goes away. However, if you're taking estrogen for menopause symptoms, endometriosis may persist or return even after such a procedure. In such cases, endometriosis usually has spread beyond the lining of the pelvis. Talk to your doctor about treatment options for endometriosis after hysterectomy and oophorectomy."

Anon, have you seen the doctor for an opinion about this?

And very importantly, do you like your doctor? Does he or she give you enough information to help you make a good decision?

At the time of your surgery, did your doctor think the ovaries should come out also? What did she or he say about the endometrial tissue that was left in there? Was she or he worried about it for the future?

Does the pain and discomfort always stay the same? Or is it worse sometimes than others?

Is the pain the same on both sides (both ovaries)? Or just one or the other?

It's also possibly that you're dealing with ovarian cysts. Has this ever been a problem for you in the past?

March 9, 2010 - 8:26am
EmpowHER Guest
Anonymous (reply to Diane Porter)

thankyou I will be talking to my doctor I have had endometosis around both but the left ovary Had alot around it and the doctor just cleaned around it. I do have pain around both and heaps of pain in bowel movement once a month.. I was on provera for 12 months to deminish the last of the uterus which she couldnt remove ... I am more worried if its on the bowel and what can be done there..I have never had cysts but they did test the endometrosis later to find out the cells where producing cancer

March 9, 2010 - 1:53pm
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