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 was the best thing to happen

by Marlene
(Victoria, Australia)

I am 54 and all of my life I suffered badly with the symptoms of endometriosis, even between when I had a period. Back then no one knew what it was. I had a daughter at 29 and another daughter at 31.

After that it was awful, I just couldn't function. I was finally diagnosed with endometriosis. I had a total hysterectomy, including tubes and ovaries, when I was 34.

What a relief. It changed my life. It was the first time I didn't have any pain symptoms. I had hormone replacement therapy and it was the best thing out. My sex life was the best it had ever been. I didn't know how great it could be.

In 2006, I had bad cysts and adhesions and had them removed. 2010 the same again. 2012, I had them again but this time it was a god send because they found bowel cancer. If it wasn't for the pain of the adhesions they wouldn't have found it.

Apart from getting rid of the adhesions, they took bowel, tumour and lymph nodes. I am doing ok and see the specialist every 6 months and repeat 3 of the tests just before I see him.

I am glad I had a hysterectomy and would do it again in a heartbeat.

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May 16, 2018
Me too. Having issues and Question if it came back
by: Anonymous

I am so happy for you. I had a full hysterectomy 2 1/2 years ago at age 50 and was told i had endometriosis all on my left side inside my ovary that had a cyst and had ablated. Doctor left my right ovary and over a year ago had a belly button infection and soon pain on my right side.

Not able to lay on my right side so discovered i had a cyst on my right ovary. Since then i have blown up over 50 pounds and slowly swelling up my whole body. I had another ultrasound done last year and this time it shows internal debris and somewhat bigger but not much. Did you have any of these symptoms. I have also complained from the day after surgery of butt pain when i sit down

Sep 30, 2014
Hi Lovelybutterfly
by: Marlene

My cysts were in my pelvic region. I have had complex and mesenteric cysts. Even though I had no ovaries they thought I had cancer. The surgeon said it was a real mess in there.

Jul 26, 2014
In the same boat
by: nb

I am 54 and just had total hysterectomy due to findings on CT and ultrasound......enlarged uterus and cervix, ovarian cysts, plus abnormal bleeding and slightly elevated CA125. The doctor feared cancer but found it was severe endometriosis. Reading all these stories has me in fear of it coming back, plus the weight gain, etc....

However, my symptoms were such that I feel the decisions made were the best given the info we had. Praying that life will be better now!

Jul 01, 2014
by: lovelybutterfly

Where were your cysts if you had everything removed? I just had a complete hysterectomy because of my last ovary being overtaken by cysts (complex) and we decided to get rid of everything if last ovary had to be removed. The dr found everything extremely inflamed from cyst and endometriosis. We were expecting cancer which was not visible and biopsy results have not came back yet. Thanks!!

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