PERSONAL STORY: KAYE GEIGER

My pain started the day before entering 6th grade. I remember laying in the cool grass on my belly because it seemed to help my cramping. Thinking I had eaten too many green apples, which we kids did often, my Mom gave me the usual teaspoon of salt to relieve the churning. Later, much to my surprise, I noticed blood in my panties when I went to the bathroom. I told my Mom and she was casual about everything and explained what I needed to do. That day was the beginning of my nightmare with endometriosis.

I am 42 now and it has been thirty years since I became a "woman". After missing a day a month from school for years and hearing that it was all in my head, I finally got the nerve to go to a doctor at the age of 16 and explain my symptoms. His reaction was that he knew it was a ploy to get birth control and that he would write me a prescription. The pills did seem to help but when I told my mother she was a bit upset and I quit taking them. I then read through research that I may have something called endometriosis. I learned that over-the-counter arthritis medicine may help and was so happy when they gave me some relief.

In my early twenties I again explained to a doctor the symptoms and my suspicions of endo. He gave me a prescription for Motrin. It was a lifesaver. I would not go anywhere without my Motrin! Another doctor, after hearing my concerns and fears of having this disease, had me come in for an examination during my period. He proceeded to give me a rectal exam and proclaim that I did not have endo because he didn't "feel" any on my bowels.

Another decade passed and I was a Motrin, hot bath and heating pad junkie. I would take my Motrin, get in the tub ( refilling it as the water cooled ) then when the pain got bearable, lay in bed with my heating pad. My whole day was shot. Once, while traveling, I had to have my boyfriend go from hotel to motel looking for a room with a tub while I threw-up in a styrofoam cup.

I met my husband in late 1988. By '91 we had been serious for a couple years and because he had a daughter from his first marriage and we hadn't used birth control, except condoms in the early days, I knew that my endo was a fertility problem. I went to a well-known OB/GYN and told him I had endo and wanted to get pregnant. I was 33 years old. Much to my amazement he believed me and scheduled a laparoscopy. I had the laparoscopy in November, took shots of Lupron (which I now regret) and in late July/early August I became pregnant. We were thrilled.

Over a year ago, after ignoring what I already knew, I went to another well-known OB/GYN and explained that I had endo and wanted to get pregnant. My periods had become increasingly more painful and I feared that it was back. He sent my husband for a sperm analysis and referred us to a Reproductive Endocrinologist. Although I questioned both doctors about my endo and if it was causing infertility, the answer was no. I was put on Clomid and we did 2 IntraUterine Inseminations with no success. I had a gut-feeling that we were wasting time and money.

Several months after taking Clomid I had severe pelvic pain and went to my family doctor. He treated me for an urinary tract infection even though I had no urinary frequency, no burning and the urine test came up negative. I called my OB/GYN and was told I could see a nurse practitioner in 4 days. She pressed on my belly and scheduled an ultrasound. The tech said I had a cyst measuring 4.2cm. A few days later I went for a follow-up visit and spoke to the doctor about my options. I decided to have another laparoscopy and take it out along with the endo, which I knew was back. Instead of a laparoscopy, I had to have a laporotomy and I lost my left ovary and 1/3 of the right. The cyst wasn't 4.2cm, it was larger than my uterus. My right ovary had 2 cysts and was "glued" behind my uterus. The doctor described my insides as being frozen and looking like someone drizzled glue inside me.

Of course, neither my OB/GYN or the Reproductive Endocrinologist warned me that Clomid is risky for women with endo. When I asked if the drug caused the cyst I was told no. I did ask how long he thought I had had the cyst and he stated, "at least several months." Bingo! Apparently, the ovaries are estrogen hot-beds, which endo loves, and a cyst is the perfect place for it to attach.

I've spent years trying to get relief from this debilitating disease and just when I would think I've found the answer, I'm proven wrong. Now I'm playing the waiting game. My doctor prescribed Provera to give my partial ovary a rest after surgery and although he said I would have a period the day after my last pill, I'm still waiting on my period. It's been almost 3 weeks.

Endometriosis has controlled my life for 30 years and although I felt a sense of relief when I finally got my suspicions confirmed, it's bittersweet because I still don't have many answers. But I will still continue my personal research and hope that one day women won't suffer like I have.

Kaye Geiger