Monday, November 7, 2011

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.


  1. Unfortunately I have found myself in the position of pushing my doctors several times. Usually I am spot on. This is a good lesson about trusting your instincts, but I am sorry you turned out to be right. :( Did they clear out the endo?

  2. I'm always afraid that I'm being a hypochondriac and worrying needlessly. I know you recently were right about your med dose--so scary.

    Yep, they cleared out the endo. Remember the surgical glue and sore abs drama I was having last winter? That was after my laparoscopy.

  3. I have yet to be cut open for an official diagnosis. I was told that I most likely had it on several occasions by different OB/GYNs. The last time I was given a Saline Infusion Sonogram it revealed that I have chocolate cysts. It was finally confirmed that I have endometriosis. Because we are again trying to go through IVF we aren't going in the direction of cutting me open to clean me out.

    I tell you this though, having a bowel movement is akin to shitting ground glass. Okay kind of graphic but I swear it feels like that. Oh and after I pee my pelvis spasms with pain. For years I've been dealing with extraordinarily heavy menstrual cycles that have now only shortened their cycle length due to menopause being around the corner.
    I really wish I had been diagnosed in my teens and I wish I known that all that 800 mg ibuprofen I was prescribed, and it never helped, was going to affect my liver. I almost cooked my liver once. Yeah I have to be extra careful now to not use too much acetaminophen.
    Even a hot rice bag, often I'm told to go use one, is a joke. A hot bath every night only helps the rest of the body but not my pelvic region. Three times this week I've told my husband I want to die. You know how the pain is so bad.

    I really feel for you. I understand your pain.

  4. I have PCOS, and did not find out till I was over 30. I had cramps that were so debilitating I did throw up, and sometimes fainted. I remember telling God that death would be welcome. In high school they actually suspected I was on drugs once because "no one throws up from their period". I was also brushed off by my doctors when I would work up my teenage courage to tell them about my bad cramps. Giving up caffeine before and during my period and eating lightly helped. There was a huge improvement after the birth of my son. We are expecting our second son and while part of me would like a daughter, MORE of me was happy not to pass on a likely future of intense pain and infertility.

  5. Celia--Congrats on your second pregnancy. I can relate to being thankful that you aren't passing your genes (and pain) to a girl, even though I don't have kids yet. I'm angry at your past doctors for suspecting you were on drugs--GAH.

  6. Here from the Creme (#14)....I know exactly what you are talking about in your post. For the past three years I have been telling doctors about my heavy periods and horrible cramps. They brushed it off. Finally my husband and I went in to a fertility doctor after a year of trying and found out that I had a large fibroid. During surgery my doctor also found endo- so one or both of those things were possibly causing all of my pain.

    Because it took me going to a different doctor to get an answer, I decided to switch GYNs this year. This experience has definitely taught me that you need to PUSH and FIGHT for medical treatment.

    Good luck in 2012!