Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Hysterectomy at 26 due to endometriosis

by Patti
(Baton Rouge, LA)

I had a hysterectomy at the age of 26 because of severe endometriosis. The pain was so severe that basically I was willing to do anything to stop it.

Since I did not have any children it was a very tough decision but my doctor told me there was no other way to stop the pain.

I had had lupron injections and several laparoscopy procedures but none of them worked. Now at the age of 39 I have been experiencing the same kind of pain in my pelvic area and the doctors tell me its IBS.

Of course the medication is not working and the doctors think I am crazy when I mention endometriosis. I feel like I am in a losing battle here. What do I do?


Name: Mary

Title: Hysterectomy

Hi, like you I had a hysterectomy at 25. I also did not have children, but for me it was easier because I never wanted any. 7 years went by and I had no problems and felt great. Last year I started bleeding again! I was shocked.

Now living in a different state from where I had my surgery, and I have had to explain everything to new doctors. Just when I thought my billion trips to the OBGYN were over.

They think that maybe some uterine tissue got left behind and the Endometriosis is back, cause it comes like a cycle same time every month, with lots of pelvic pain.

I have one ovary, but everything else is gone. My choices are to see an oncologist to cut out the right cuff of my vagina where the bleeding is coming from. Of course I am opposed to that. As of now I'm just going to try a low dose birth control to try to keep it at bay and from spreading to my bladder and bowel.

You are not crazy...aggressive Endometriosis never goes away it seems. Something I was not told when offered the hysterectomy, although I probably still would of had it done.

I hope you find a solution. I don't know how old this post is, I didn't see a date. I don't have an answer for you... It seems to be a pick of the lesser of two evils.

If I get my ovary removed I have to deal with bone loss and menopause, if I take estrogen the Endometriosis can still come back.

There is no win. But you are not alone. :-)

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