These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.
I have had endometriosis since I was 11 years old and I am now 38 years old. My very first period was 11 days long. My periods were tough from the beginning,but the symptoms really became problematic during my high school years.
I was on the high school track team and noticed that I was having pain in my lower right abdomen. I figured it was because of how I was running, and so did my doctor. But pain became exhaustion, migraines, and bloating, and before long my mother was whipping out medical books and pleading with doctors to figure out what was wrong with me. At some point either she or the doctors must have
given up. No answers.
Then in college came sexual activity and taking the pill. The pill and I didn't get along and my symptoms became much worse. Not wanting to miss out on my college years, I began numbing the pain with alcohol.
My twenties were spent going to doctors, all of whom said I either had an "ovarian cyst" that popped, or chlamydia (I'm serious), or some other problem. They all wanted to put me on the pill, which I refused. Then, at 28, I went to my mother's gyno, beside myself in pain. She did a pelvic exam and said that I quite likely had endometriosis. I spent three days in agony after that exam! She told me to use heating pads and Motrin and said she would monitor my progress.
One day about seven months later, I snapped. My mother says I had a nervous breakdown. I couldn't stop crying. She went with me to my doctor, pleading with her to do something. The doctor finally agreed to do a laparoscopy.
At the time of that surgery, I was already a high Stage III. The doctor treated me very differently after seeing what a mess I was. I had an endometrioma in one ovary, my cul-de-sac was filled with endometriosis, as were my utero-sacral
ligaments. She snipped the utero-sacral nerves to help with the pain.
As expected, the pain was back within six months. Now I was 29 and was determined to somehow preserve my fertility. I decided to seek out an
infertility specialist, figuring that these guys deal with endometriosis every day. I walked into my first prospect's office, with a chip on my shoulder, and politely told him what I had been through, why I was there, and plainly asked him "Do you want to treat me or not?" He said yes, I will treat you. He also said how sorry he was that I had been through so much.
First, he wanted me to try taking a large dose of Provera to see if he could stop the growth. The side effects were terrible, including weight gain,
personality change, and moodiness, but I followed his direction for about four of the planned six months. But the pain was still there and I was having trouble sleeping and tremendous bowel problems. I was also having recurrent bladder infections, which I said I thought were from the endo. He said it was unusual, but not impossible. He said it was time for surgery again, even though
I sensed that he thought I was trumping up my symptoms.
Add doctor #2 to the list who treated me very differently after the surgery. This time it was in the same places as before, except now it was on my colon, my ureters and bladder (thus the infections) and my uterus. I was Stage IV. My
ovary had slipped behind the pelvic wall and was almost overtaken by the huge endometrioma that had come back.
I met my husband two months after my second surgery. I was very honest with him about my condition, and we immediately started trying to conceive. Thanks to the apparently excellent surgical technique of my specialist, I conceived
within three months.
Today, I have three children. I had them very close together, which is probably why I was so lucky. I had to have surgery again after my third child, and my pregnancies weren't exactly problem free. For some reason, with my daughter
(the 3rd) I was in pain for the entire pregnancy, so I lived on painkillers. And I had a trip to the ER with my second, apparently having ripped some scar tissue as my uterus grew. But the three of them are healthy, happy children.
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