Endometriosis story

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

27 years for diagnosis of endometriosis

by Lilly
(Texas, U.S.A.)

I had to persist and suffer for many years before I was finally diagnosed with endometriosis.

My symptoms began at 29 years of age with stomach/abdominal pain. Eventually my bladder became the worst affected organ with moderate to severe pain.

I saw several internists and two urologists before I was tested for and given the diagnosis of probable Interstitial Cystitis (I.C.) at age 30. I was treated with weekly DMSO treatments and by choice stopped DMSO instillations after about six treatments because they were extremely painful.

I was able to conceive with no difficulty and had a child at age 32. I had a reprieve from bladder pain during and after my pregnancy until my child was about age three. Pelvic pain, especially my bladder, were ever present, despite following the diet for I.C.

Due to my pain and taking care of my child, my husband and I decided against having more children. I should mention here that we did not use any artificial means of birth control; Natural Family Planning (The Billings Ovulation Method is what we practiced).

By my late 30's, in addition to my bladder, pain began affecting my stomach, intestines, and bowel. I was already a patient of a urologist, but since my G.I. tract was affected, I saw several gastroenterologist.

Celiac disease was ruled out following tests. I was experiencing many problems with food digestion, having side effects such as heartburn, upset stomach, severe constipation, hives, and nausea. I saw an allergist who did a complete work-up, testing me for airborne and food allergies. Food allergen tests were negative.

By this time, I was in so much pain I gave up eating anything but a small selection of fresh vegetables. My weight went down to 97 lbs. (I am 5'5.5" tall). My urologist was very concerned about my weight loss and referred me to a gastroenterologist who diagnosed me with a gastrointestinal motility disorder at the age of 46. This was also the age when I was considered postmenopausal.

Medication and diet were effective in alleviating the worst of my painful G.I. tract symptoms. I continued to experience vague pelvic pain (bladder included) and constipation and eliminated many foods (gluten containing grains, nuts, soy based products, red meat, all alcohol, most dairy, beans, and any high fiber foods). Intercourse was extremely painful.

In early 2012, at age 55, I had a severe flare up of acid reflux, despite my taking a prescription medication for this purpose. My gastroenterologist performed a test using a machine that records the electrical activity of the G.I. tract (enteric nervous system) and results of this test indicated I had endometriosis.

My doctor referred me to a physician who has expertise in the treatment of endometriosis. I underwent a laparoscopy to have endometrial tissue removed. Deep growth was found at the top of the outside of the vagina as well as wrapped around the bowel. All of the endometriosis was removed.

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