What is Endomitriosis?

According to the Mayo Clinic (http://www.mayoclinic.com/health/endometriosis/DS00289):

“Endometriosis is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region.

In endometriosis, displaced endometrial tissue continues to act as it normally would: It thickens, breaks down and bleeds with each menstrual cycle. And because this displaced tissue has no way to exit your body, it becomes trapped. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal tissue that binds organs together.

This process can cause pain — sometimes severe — especially during your period. Fertility problems also may develop. Fortunately, effective treatments are available.”

In some cases, mine included, endomitriosis is hereditary. My mother had it and my grandmother had it. My grandmother had a full hysterectomy at the age of 30. My mom has also had a full hysterectomy. I don’t want this to be my fate. That is why I am working so hard to keep what I have left. I don’t want to take hormone replacement therapy (HRT). I have enough to worry about without adding the side effects of HRT to the mix.

Endomitriosis affects 20% of the female population in the world. Some have more severe cases, others have less severe cases. Unfortunately, I am one of the severe ones. I have “Stage 4” endomitriosis. I don’t know many people who have endomitriosis as bad as I do. I can count on one hand the people I know personally who have had similar experiences to mine i.e. surgery, lupron shots, etc.

Some of the symptoms of endomitriosis are:

  • Painful periods
  • excessive bleeding
  • infertility
  • blood clots
  • menstural cycles longer than 7 days

Endomitriosis is “fed” by the production of estrogen in the body. This is why I have been on the Depot Lupron medication twice. The laparascopic surgery is done to remove lesions. When my left ovary was removed my ovary had attached to my hip, intestines and my bowel. My ovary was the size of an orange at the time I had it removed. A “normal” ovary is the size of a walnut. My doctor was able to remove most of the lesions with surgery.

After sugery, Lupron shots will continue to remove any remaining endomitrioma. Because it can’t live without the hormone estrogen it “dies” off. Depot Lupron is an injectable medication that induces the symptoms of menopause. I didn’t have a period for 6 months but, I got to experience what menopausal women go through. Each time I took the shots I took them for 6 months. It was not an easy process and it’s also expensive. Each shot with my insurance cost $100 + $20 for the doctor’s visit to administer the medication.

It can only be diagnosed by laparascopic surgery. The only “cure” for this illness is hysterectomy. Pregnancy can give a reprieve from the disease but once the body is menstruating normally, the endomitrioma will begin to grow again. Once the Lupron shot are finished, your body will begin to produce the natural hormones again. Which will in turn produce the endomitriosis again. It’s a never ending cycle.

I have seen the same OB/GYN for 11 years. For six years, I saw my OB/GYN every 3 months for a sonogram. I have established an great relationship with my doctor. We have a non-typical Dr./patient relationship. Every time I go in we joke and laugh. He asks about my family and what is going on in my life. His nurses know who I am and are always happy to see me (probably because I pay them, LOL). They all greet me by name. I am glad that I can discuss different options with my doctor and he is willing to try things I ask him about.

In order to preserve what ovary I have left, my doctor and I decided to keep me on birth control pills. I am on LoSeasonique. So I only have 1 period every 3 months. It’s really great!! It manages my pain and my hormones. And the best part is that during the time I have been on these pills, my ovary has reduced in size. I am very happy with the results of the unconventional treatment that we are trying. As long as we continue to have this type of progress, we will continue this route. Now, I only have to go a sonogram every 6 months. It was a joyous day when he told me not to come back for 6 moths. I love my doctor but, I have seen him more than any woman should have to see her gyno!!!

Going to the doctor is always an emotional experience for me. I know that another surgery is inevitable. At some point he will tell me we need to remove the current cyst or worse. I know that a hysterectomy is in my future. I hope that day does not happen for a long time. I am willing to try almost anything to keep the ovary I have left.


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