The Frustration of Living with Endometriosis
I was just about to go hiking up a mountain in Utah three summers ago when I felt the familiar cramps twisting my low belly. I went to the bathroom and saw the telltale spots of blood in my underwear that signified my monthly period had finally come. I cursed softly under my breath and put on the maxi pad I had been carrying with me for days now in anticipation of its arrival. It was well over a week late, and I was angry that instead of getting it while I was still home in Massachusetts, when it was originally due, it had been delayed, and instead showed up while I was visiting one of my closest friends from college, whom I had not seen in well over a decade.
Not "just another period"
For many, getting one’s period a week late during a vacation would be only mildly or maybe moderately frustrating. But for me, as someone with severe endometriosis, it amounted to a complete crisis. It meant that most of our hiking and camping plans for the remainder of my trip there --my first time ever to Utah-- would have to be shelved. The pain and heavy bleeding would make such an excursion not only unpleasant, but ultimately impossible.
Luckily, the worst pains had not set in those first few hours of getting it, so I was at least able to take an ibuprofen and hike up one mountain with my friend before we headed back to her house (though we were, at some point, viciously attacked by a very angry sage grouse, who really seemed focused on attacking me, and I can’t help but wonder if it could smell or sense the blood on me, and that was why I was its target). But the bigger trips we were planning on taking in the subsequent days had to be completely nixed, in favor of me lying on her couch with a heating pad and watching old sitcoms on her television for the better half of the next couple of days. We made a few local visits to points of interest around her home in Salt Lake City for an hour or two at a time, as I felt better at certain intervals, but an extended road trip was now out of the question. And since I tend to live on a tight budget, I knew it would likely be quite a few years before I could afford to return to Utah, if at all, which made it all especially disappointing. In the meantime, I was so sick I couldn’t even attend a barbecue twenty minutes away from the house and meet my friend’s girlfriend (whom she is now engaged to). I wound up, instead, staying behind in bed, insisting she go without me and enjoy herself.
This was nothing new to me. My period has been responsible for torpedoing well-constructed plans and complicating everything from dates to trips to professional and academic deadlines, for the vast majority of my life. I have missed countless days of school and work over the course of the past 25 years I have been menstruating. My period has arrived on birthdays, anniversaries, and numerous celebrations, not to mention while I have been on planes and trains hundreds or even thousands of miles from home and a comfortable place to lie down. It has come days or weeks early and days or weeks late, when I least expect it, sometimes as if to play a game of “gotcha!” with me. Almost every time I do get it, the pain at some point becomes unbearable, to the point where standing or sitting up for more than a few minutes takes a huge amount of effort. Everything from eating to traveling to sex become things I have to either reduce or abstain from altogether while it runs its course because they can all make the pain much worse. I usually need to forego indulging in my favorite foods, and being intimate with my partner. Any excursions or important meetings I have planned are either cancelled or postponed till I am mostly done bleeding.
Living with an invisible illness
In the case of my Utah trip, my friend was extremely accepting of the situation--and put me at ease. She’s known me for a long time and is familiar with my health struggles and I warned her a couple days before the trip that despite my best efforts, I was off-schedule and might get my period while visiting her so our plans had to be flexible. However, for those I am not as close to or who are not as tolerant, this has led to rifts in relationships. Some friends and past partners have said snippy things to me, or been outright angry when I have had to cancel or alter plans (sometimes at the last minute) due to my endo. I’ve had to deal with many awkward situations in trying to tell a professor or boss why I am late to class or work, or absent a day or two every month--especially if that professor or boss is a man (though some women professors have been equally horrible to deal with). I’ve often had to evade the truth and just let them know I have a disease that complicates my life, but many have reacted with skeptisism or annoyance.
Even though public knowledge of endometriosis has increased significantly in recent years due to the proliferation of social media and celebrities sharing their personal stories of their own struggles with the disease (such as Lena Dunham), there is still a lot of ignorance surrounding it-- and also a lot of stigma. This was even more so the case when I was in college 20 years ago and working more traditional jobs in my twenties and early thirties where I was expected to punch a clock and be “on” for eight hours a day, no matter what was going on inside my body.
A constant battle
In recent years, I have switched to a mostly freelance professional life and work mostly from home (in great part due to the nature of my health issues), which has helped a lot in avoiding these continued challenges. It’s a compromise that works for me. Nonetheless, my period still poses an obstacle in my scheduling of things like trips or partaking in professional panels and conferences, and many smaller things as well. It has come to the point where I am not seriously considering a hysterectomy to control the pain and take some control over my life back (Note: a hysterectomy won’t cure endo, but can cure the companion disease, adenomyosis--which is more or less like endo of the uterus--which I also have).1
Has endo led to a lot of frustration or cancelled plans in your life? How have you dealt with that or planned around it?
Have you ever experienced a "weird" symptom and wondered if it was endo related?