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 and double colectomy because of endometriosis

by Anick Thomas
(Juno Beach, Florida, USA)

After 20+ years of struggling with endometriosis I have had the hysterectomy. I was diagnosed at stage 4 when I was in my early 20's. I'd asked to be tested for years but doctors (male) always told me I was too young and it was an absurd notion to think I had endometriosis.

So, needless to say, I was at a stage 4 by the age of 23. They did laparoscopies, gave me injections to stop my ovaries from working for a while, and treated my pain. I refused at this age to have a hysterectomy because I wanted to be a mother.

They gave me three options: birth control (can't get pregnant this way), hysterectomy (can't have a baby this way), or pregnancy (difficult with this disease). After many years, a miscarriage, and severe pain for years, I was finally able to have my son when I was 30 years old.

For two years after my son was born I had no symptoms at all. The symptoms started to develop slowly again, and then after several more years I began having rectal bleeding.

I had a mass on my colon so large that they could not perform a colonoscopy. At this point I decided it was time as I found it difficult to cope. I ate right; I gave up meat; I ate only organic produce...it just wasn't enough and my lesions were far too large to reverse by diet alone.

Eating right helped but I ended up doing the hysterectomy (leaving one ovary in - thanks to a great doctor!) and then one month later having a double colectomy (removing pieces of my colon which were badly affected and bleeding).

The pain has not completely gone away, and since I have one ovary left, I still have some menstrual symptoms (PMS and such but no bleeding). I have gone completely vegan now and still have to be careful how I eat (I cannot eat soy at all!!).

With the severity of my condition, if I had to make the choice again, I would have the hysterectomy but I told my gynaecologist that I would only do so if they left one ovary in; I don't want anything artificial in my body. Once you start messing with hormones, it gets so complicated and difficult to get the right dose.

So, I'm still very careful about how I eat; I occasionally have some abdominal cramping (still have lesions on my bladder); but I don't have to take any pain medications. I believe a lot of it has to do with knowing your body; what it can handle and not handle; how tolerant you are to pain (being on constant pain meds is hard on your liver and other organs); and doing what's right for you.

Also, find a great doctor that will listen to all of your concerns and answer all of your questions; my doctor was involved in a lot of clinical research for endometriosis...a major plus for me!

If your condition isn't too far advanced; I would do everything in your power to avoid surgery, especially if they want to remove your ovaries because then they'll want to put you on Hormone Replacement Therapy to replace the hormones your own ovaries would produce (this is what never made sense to me at all).

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