A large part of my teenage years was spent curled into a painful little ball. I used to get cramps that were so debilitating, I couldn’t do anything but lie in the fetal position and whimper.
Not ever having known anything different than incredibly painful periods, I honestly didn’t think much of it. I was also having really heavy periods — like Fort Knox wouldn’t have protected me kind of heavy. At the time I didn’t realize what I was experiencing was unusual; I just thought that’s how every girl’s period was.
When I went to college and shared close quarters with other girls, I started to get a clue that something was wrong. When I worked up the nerve to discuss it with a doctor, all of my symptoms were dismissed with a shrug and a prescription for Motrin. I probably should have been upset that the doctor didn’t really listen to me, but I’ve never been one to linger in the gynecologist’s office and, frankly, I was relieved to hear that there was nothing really “wrong” with me. Who wants to have something wrong down there?
Over the years I just couldn’t write it off, though. As I got older, monthly absences from work were becoming a professional issue for me and I just knew something was amiss. I had a bit of wanderlust in my post-college years, so I moved almost every year and changed doctors with every move. You just can’t get a good health history going when you’re hopping from doctor to doctor. I was misdiagnosed several times. One doctor thought I had Polycystic Ovarian Syndrome, which was a pretty good guess but I just didn’t fit the bill quite right. Another doctor diagnosed me with Irritable Bowel Syndrome because, once a month, things get pretty darn irritable for me. Again, it was a good shot, but it wasn’t the right diagnosis.
Finally, when I settled down for a while, I stuck with one doctor — and that’s what did the trick. You can’t really expect doctors to give you a spot-on diagnosis when they just met you and then never see you again. This doctor saw me several times and gathered enough information to know what tests to run. Finally, I had a diagnosis that made sense.
The lag time I experienced before diagnosis isn’t unusual. According to the Endometriosis Foundation of America, the average woman is 27 when she’s first diagnosed and may have had symptoms up to a decade before. It’s just that tricky.
Endometriosis is a condition where, like little biological illegal immigrants, bits of the uterine lining implant outside the uterus. Those wayward bits of tissue basically wreak havoc during every menstrual cycle. Severe menstrual pain like I experience is a common symptom as are my other issues including nausea, diarrhea, clotting, irregular periods and blood in the urine.
Many women also experience painful intercourse. I lucked out — that’s not an area I have trouble with. Over half of the women with endometriosis also have infertility; I can’t say whether or not that’s an issue for me as I’ve never tried to get pregnant — I adopted my youngest son and my eldest is my boyfriend’s from his first marriage.
To officially diagnose endometriosis, a doctor has to do a laparoscopic procedure and biopsy some of that tissue. I’ve refused that test, so my diagnosis is considered “uncertain.” The laparoscopic biopsy is minimally invasive and my doctor really wanted me to do it. But, since there are only two main options for endometriosis treatment and I don’t want to do either of them, I didn’t see the point of doing the test. Just knowing what was wrong was enough to put me at ease.
Hormone treatments are common for endometriosis patients, but as birth control pills have always been problematic for me, I didn’t want to mess with hormones. Perhaps the most successful treatment is called laparoscopic excision surgery; the Endometriosis Foundation of American considers it the “gold standard” for treatment. But I didn’t consider my monthly pain problematic enough to justify a surgery that’s described as deep tissue removal.
I manage my symptoms mainly with nutrition, exercise and over the counter medications. Though my periods are still irregular and heavy, now that I work from home it’s much less of an issue for me. (I don’t have to have those embarrassing “Hey, boss? I need to run home for a clean pair of pants” conversations anymore.) There is still pain involved, but I know how to proactively manage it so it doesn’t get out of control. For me, knowledge was the best medicine there is.