Head in the Sand

The moral of the following story is, "Don't put your health completely in the hands of your doctors."  They might not correctly interpret your descriptions of your symptoms, and of course they don't always spend as much time considering options as you would yourself.  For me, this lesson came from my experience with a disease called endometriosis.

A quick side note for readers who aren't familiar with endometriosis:  Endo occurs in some women after endometrial tissue from the uterus migrates through the fallopian tubes and out into the abdomen during menstruation. All women experience this retrograde menstruation, most without ill effects. In women with endo, for some unknown reason, the tissue attaches to the outsides of organs in the pelvic cavity. Resulting symptoms include pain during menstruation, sex, and bowel movements.

The first time I heard about endometriosis, I was a high schooler working at a natural foods store.  My coworker told me she had it and I felt a twinge of panic as she described her symptoms.  They sounded so similar to mine, but I was a little comforted that hers sounded worse. Her pain was debilitating throughout the month, whereas mine was "only" debilitating during my period. Sure, I couldn't sleep or move when it was bad, but that was normal, right? My aunt used to experience pain so bad she vomited and I hadn't vomited yet. That became my benchmark for how much pain was too much. Not puking? Suck it up! Furthermore, after I found out that endo ran in families, it was comforting to know that my aunt had never been diagnosed with it.

The worst pain in high school always happened late at night.  To attempt to fall back asleep or think about something other than the excruciating pain, I'd listen to a cassette tape of U2's The Joshua Tree. If I didn't fall back into a heavy sleep before the tape ended, the loud click when it reached the end would jar me out of any dozing state I'd managed to achieve. Particularly bad nights were when side 1 didn't put me into a sound sleep and I had to get out of bed to switch to side 2.  Standing up was guaranteed to make the cramps worse, not to mention that the music on side 2 was inferior.  (Why did it never occur to me to move the boom box closer to my bed?  Another smart move would have been to graduate to a CD to save myself from those awful clicks.)

My cramps decreased when I was very physically active. During the school year in high school, they were manageable when I was dancing all the time. Summertime brought less physical activity and family vacations when my period would inevitably hit. Cramps hit me hard at the beach, the mountains, and a summer afternoon in New Orleans when I had to curl up on a bench in a museum.

In addition to exercise, going on the Pill in my 20's alleviated my cramping somewhat. However, I didn't fully understand that it was helping at the time and found the side effects troublesome. In my late 20's, I stopped taking it. I was a vegetarian with vegan leanings who'd worked in a natural foods store, so eschewing medications wasn't out of character.

Even when my symptoms weren't intolerable (ie, rendering me unable to move and wanting to die), they were disruptive.  High levels of physical activity ceased to help and periods dictated my training schedule for half marathons. Ready access to tampons or The Keeper wasn't enough to keep me exercising on my heaviest days. If I dared to run even a short 3-4 miles, cramps would inevitably paralyze me halfway through. I would limp my way home, doubled over and feeling foolish for daring to run on a heavy day.

In my 20's and early 30's, I described the pain to each gynecologist and nurse practitioner I saw for annual exams.  Their response was always the same: take ibuprofen or naproxen and use a heating pad. Their implicit suggestion was to suck it up. Massive doses of ibuprofen took the pain from a 10 to an 8 and I was still incapacitated. NSAIDs also gave me horrible heartburn as I got older. As for the heating pad idea, well, my cramps laughed at them.  After I stopped taking the Pill, doctors suggested I get back on it to ease my cramps. I had decided I was a Natural Woman, though, medication-free and indulging my OCD tendencies by charting my temperature every day. I wasn't fully convinced at that point that the Pill helped my cramps, anyway.

Doctors never mentioned endo and I got used to the standard "800 milligrams of ibuprofen" suggestion.  Although I knew a little about endo and thought I might have it, I trusted my doctors to let me know if further action was needed.  Finally, after we had trouble conceiving last year, a doctor suggested a laparoscopy to look for endo. Years of telling doctors about pain before we started trying hadn't prompted any discussions of surgery or prescription pain relievers. Although they had offered the Pill with the ostensible purpose of decreasing cramps, they failed to mention that the Pill could quiet down a disease that most likely compromised my fertility.

It's obvious that I wasn't assertive enough. I'm not usually shy about telling doctors what's going on with my body, but it seemed almost shameful to complain about cramps. Didn't every woman have them to some extent? The "it's not bad 'til you puke" mentality had stuck with me. Having pain that made me nauseated and wanting to puke wasn't enough. Instead of inwardly rolling my eyes at the heating pad and ibuprofen suggestions, I should have described exactly how much pain I was having. Instead, I missed work every month and ignored a disease that was probably impacting my fertility.

Dr. Google is a blessing and a curse (hello, paranoia), but I hope young women today use its power for good. Maybe instead of living in denial like I did, they'll google "endometriosis" and insist on getting checked out.