Endometriosis: Before my diagnosis

This post is about menstruation. You’ve been warned.

Still with me? Good. I know some people find menstrual cycles a scary topic, but it’s something that needs to be discussed. Because there’s too much ignorance surrounding the subject, and there are very real repercussions as a result.

As I’ve mentioned in the past, I have endometriosis. I am in remission at present; I am currently not having periods because I am breastfeeding my son. Not all women experience such an extended break from the menstrual cycle (my son is nearly 15 months old); I am very grateful mine’s lasted this long.

I used to write a blog about my endometriosis, but I got pregnant shortly after I started it and thus ran out of things to talk about for a while. But I’m not done discussing the topic. In fact, judging by the length of this post and the one that follows, I have quite a lot left to say.

There is a strong indication of a genetic component to endometriosis. Based on their symptoms, we suspect my mother and her mother had it, though they were never formally diagnosed. Odds are my daughter will also have it. So you can see why it’s a pretty important subject to me.

But let’s back up a second. I’ll start at the beginning. I even remember the date: January 17, 1987.

The beginning

My endometriosis journey started four months before my 13th birthday. I knew periods were coming, of course. I was one of the last girls in my class to get them. And I held out some faint hope, as I had with breasts and body hair, that puberty would somehow miss me. The longer I went without menstruating, the brighter this hope grew.

Then, one cold January day, my lot was drawn. My parents and I went shopping out of town. On the way home, we stopped in a gas station to use the restroom. And there was this…stuff in my underwear. Not blood – I’d have known what was going on if it were blood. Blood is liquid. Red. This was not. It almost looked like I’d crapped my pants, but I’m pretty sure I would have noticed if that had happened.

“Um…Mom? Can you come help me?”

“What’s wrong?”

“I…don’t really know.”

But she did, of course.

She helped me get cleaned up, gave me a pad, and took me home. The pad stayed clean, though; my body was done with that “period.”

I was not a period newbie. I knew what they were all about, and that they came every month. I also knew you were supposed to track your periods. So I marked the date in my brand-new day planner. I then placed a “p” (which is how my mom marked hers) on the 17th of every other month that year.

Didn’t quite have my facts straight there.

But the joke was on me, because I didn’t have another period until the following January. Talk about getting my hopes up. One period and done? Yes, please.

“You get used to it.”

The next one was a “real” period. Cramps and heavy flow. How heavy? I missed the entire week of school. I was woozy and achy and sick to my stomach.

“Women do this every month? And just go on like nothing’s happening? How?”

“It gets better. And you get used to it.”

Well, not exactly. But my body did adapt. By June, when I had my next period, I’d become sufficiently adept at handling the flow that I felt safe enough riding my bike to the post office, a mile away. I was tired and dizzy when I returned, but at least I was no longer a shut-in.

I was also rather digging the 6- to 12-month breaks between cycles. But of course that didn’t last.

I was 16 before I started having cycles on anything resembling a monthly basis. By this point, I’d learned that the typical menstrual cycle was 28 days long. So I started marking my little ps 28 days apart. And lo and behold, every single period I had was late. Over the course of a few years, I determined that my cycle was actually closer to 34 days on average. But I was never regular. The slightest upset, like traveling out of town, could disrupt the works.

That was nice: For several years, I did not have a period while I was traveling. I would start within the hour upon returning home, but never on the road. Man, I miss those days.

With regularity came increasing amounts of pain. I missed school because of cramps – at least 2 days a month. I went home sick with them. I took so much aspirin and ibuprofen that my ears would ring. I was tethered to the wall by a scalding hot heating pad for days.

“Who gives a flying crap about wearing white pants to a party? The last thing I feel up to is a party.”

“It gets better. And you get used to it.”

The medication

When I was 19, I went on the pill. It was supposed to help with the pain. It didn’t. I woke from a sound sleep with tears streaming down my face, so badly did I hurt. Once I woke screaming. I would crawl to the closet, get the heating pad, crawl back to bed, and press the cold vinyl pad to my abdomen in agony, trembling until it heated up and soothed the pain.

Not “relieved.” There was no relief. Only attempts to make it bearable.

And the flow? Two pads at a time was my usual rate; on really bad days, I’d layer three of those things in my XS undies, overlapping them like shingles. (Because of my cramps, tampons were never an option for me.) A diaper would have been easier.

Once I even tried a product intended for urinary incontinence. Didn’t work too well. Urine is thin. Blood is not. But it was worth a shot.

Between the ages of 19 and 28, I tried various birth control pills and pain relievers. Nothing really helped. I missed school. I missed work. I missed dates, parties, concerts. I fainted once at a friend’s house, when my flow was particularly heavy.

I learned that, should the unthinkable happen and the pain strike while I was an hour away from home, I could set the cruise control and wiggle my knees like a butterfly’s wings to ride through the worst waves. It didn’t completely alleviate the cramps, but it was just enough to keep me from running off the road until the pain subsided. I became adept at using the cruise control buttons to accelerate and decelerate.

It didn’t get better. But I did get used to it.

I’d talk with other women about their cramps. “What do you do? How do you deal?”

“Pelvic thrusts. They kill cramps.”

“A warm cup of tea.”

“When it gets really bad, I take an Advil.”

Obviously, there was something wrong with me.

The diagnosis

The possibility of endometriosis had been mentioned over the years, both in and out of the doctor’s office, but without surgery it was impossible to know for sure. Up until this point, we were merely addressing my symptoms.

Then I got engaged. My lifelong dream of having children was finally closer to becoming a reality. If, of course, I could even have children. If I did have endometriosis, it was entirely possible that my fertility was compromised.

At 28, I consented to a laparoscopy, and my diagnosis was confirmed. The doctor cauterized my active lesions, stitched me back up, and wished me luck. He assured me that there were no physical impediments to my fertility, though there could be other factors that would affect it. As for how long my relief would last, he couldn’t say.

Three months. I had three “normal” periods. Three months in which my period consisted of three days of spotting. My overnights collected dust; for once, I was a minipad girl. My pain was also minimal. No wonder women were out there playing volleyball in white shorts. If that’s all I ever had to deal with, I could do just damn near anything.

It was all downhill from there. Each subsequent cycle was heavier, longer, and of course more painful. A year later, a missed period (yes, while on the pill) triggered the end of my marriage. My husband did not believe, until I started my period the following month, that I was not pregnant. And he wanted me to have an abortion. This from the man who’d claimed to want children while we were dating. Our divorce was final within a year.

The pain I was experiencing was becoming overwhelming. No longer did I hurt only during my period; I was also enduring intense pain during the two weeks before my period. So essentially, there was one week out of each month that I didn’t hurt. I had worked my way up to sedating pain medications, and was burning PTO as fast as I earned it. I had to get two doctor’s notes for work – one so I could use a heating pad at my desk (which was considered a fire hazard along the lines of a space heater), the other so I wouldn’t get fired for missing so much work.

One good thing had come from my diagnosis: I had a medically recognized condition. I was no longer just a whiner with PMS.

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4 thoughts on “Endometriosis: Before my diagnosis

  1. Wow. This is eye-opening Nicole. I also had problems before pregnancy but nothing compared to this.

    I can relate to that last sentence though. My conditioning to avoid ‘whining’ each month led to an emergency hysterectomy after a major haemorrhage or two.

    I’m keen to hear the rest of your story. Thanks for posting :-)

    Like

  2. My sister has endometriosis, and I have most of the symptoms now too. What saddens me is how it is still rarely recognised as a genuine medical condition. My sister was told for approximately five years that it was all in her head, that the condition was psychological. It was only after she paid out of her own pocket to see a leading surgeon that he diagnosed her with advanced Endometriosis and Adenomyosis.

    Like

    1. I’ve experienced the same. It’s so frustrating to suffer such extreme symptoms and be treated like you’re exaggerating for attention! I hope you and your sister are both able to find some relief.

      Liked by 1 person

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