A Little Background on Me

I am a very normal 25 year old in a lot of ways. I love hanging out with my friends, shoe shopping, am busy with work, school and looking for Mr. Right. However I am dealing with a disease that causes me chronic pelvic/abdominal pain, severe fatigue, nausea, and a 30-40% chance of infertility. This disease affects an estimated 5-10% of women, yet it takes on average 10 years to be diagnosed. Common treatments include frequent surgeries, strong hormonal medications that induce an artificial menopause or masculinization, and castration. Not a very good list of options, to say the least! Symptoms range from severe menstrual pain, chronic pelvic pain, infertility, bowel pain, urinary pain, heavy bleeding, fatigue, nausea, pain with sex, internal bleeding, and immune problems. There is no cure, and very little research. What is it? Endometriosis.

Endometriosis occurs when the lining if the uterus (the endometrium) grows outside the uterus. This tissue (or implant) responds to hormones the way normal endometrial tissue does- it builds, and bleeds. The major problem with this tissue bleeding is that the blood has no where to go, so it starts to break down internally, provoking a huge inflammatory response that causes excruciating pain and internal scarring that can lead to pelvic/abdominal organs forming adhesions and literally gluing themselves together. This happens every month, so no wonder why us with "endo" are in so much pain!

One would think that being in this level of pain would be an alarming symptom for doctors to find in their patients, but this is often not the case. Doctors often play down the pain, saying we must be exaggerating our symptoms. They tell us it is normal, ask if we have tried Advil (are you fucking kidding me?), suggest it is psychosomatic or due to a "maladjustment with femininity"(the only maladjustment I have is that I am in pain!) and try to prescribe antidepressants medications. Or they just ignore you altogether. It is almost shocking to find a doctor who will listen and treat this disease appropriately. However, the ones who do are GOLD!
My first period was horrendous. I was in so much pain I was passing out and throwing up. This level of pain continued throughout high school until I started the pill in grade 12. It helped a bit, but I was still out of commission a shocking amount. When I was 19, I moved away to go to school. My symptoms only begin to intensify to the point where I was in so much pain I could not move. I was so nauseated and exhausted all the time, that I began to miss a lot of school. My new family doctor strongly suspected endo, and referred my to one of the top endo doctors in the country. This doctor wanted me to undergo a diagnostic/operative laparoscopic excision with biopsy, a surgical procedure, to give a definitive diagnosis. As I waited for surgery, my health continued to deteriorate to the point where I was expelled from school due my illness. I physically was in too much pain to get out of bed. I had my laparoscopy (lap) 2 weeks later in May of 2003.

My doctor did indeed find endo, not a lot of it, and it looked like nothing in the pictures she took, but it was very metabolically active tissue that can cause massive amounts of pain. Recovery was pretty easy, and I was doing pretty well for about a year. Symptoms slowly began to get worse, and I had a second lap in November 2004. Recovery was more difficult this time around. Since then I have learned so much about this disease. I started nutritional therapy, acupuncture, traditional Chinese medicine, among other things, and was doing quite well for a long time. Symptoms have been slowly creeping back up on me, to the point where I am today, facing endo surgery #3.