Living with Migraine and Endometriosis

Source: Kathy O’Shea, used with permission

In my late teens, my period left me doubled over with pain, seemingly living in the bathroom. I was so irregular and unpredictable that it sometimes lasted a good part of the month.

The clotting and the blood were nonstop. The abdominal pain was excruciating. I was changing a tampon every 15 minutes. I dared not go far, for fear I couldn’t get to a bathroom in time. The nausea, too, often took me to bed.

This was my norm with my period. Was it everyone else’s, too?

My physician said I had "difficult" periods. I was already struggling with migraine, too, which had afflicted me since the age of 14, taking up much of my high school years. The doctor had to be right; I just had difficult and irregular periods, which often lasted 14 days.

In my 20s, I saw an OB-GYN, who tried a couple of medications to help with the cramping but never seemed to take in the severity of my experience. About a year later, I met with him to share my concern over my overwhelming, physically distorting bloating; I looked nine months pregnant. The next couple of minutes froze in time for me. I remember them viscerally.

He sat across the desk from me and leaned back in his deep leather chair, before leaning forward over the desk to say, “If I hear one more woman tell me she's bloated, I’ll scream. Bloating is not real. Women don’t want to admit that maybe they’ve put on a few pounds. My wife is also an OB-GYN, and when she gets home, I ask her, ‘So how many bloaters did you have today?’”

Immediately, tears rolled. I reticently said, “I’m sorry, but it’s so real. Do you want to see it?” He told me to watch what I ate more carefully and to make my next appointment as I checked out. I walked out the door, of course never to return. I felt so helpless and lonely.

One evening in 1993, I started feeling ill. Then the pain quickly moved to an excruciating stabbing when I tried to breathe. I tried to get comfortable but couldn’t. At the emergency room, doctors first thought I was just constipated—until I gasped. Afterward, they did tests to find a very large ruptured ovarian cyst and endometriosis—a disorder in which endometrium-like cells, similar to those which line the uterus, grow outside of it. After emergency surgery to remove the cyst, I was told I’d have to go on hormone therapy.

In the 1980s and 1990s, nobody spoke of endometriosis. Up until that point, I had never read anything about it and it had never been raised as a possible diagnosis.

In my early 30s, I started seeing a new OB-GYN, who immediately focused on the severity of the endometriosis and took me off of the therapy, which he determined may have exacerbated the migraine condition I suffered from. (Remember, too, that migraine was little understood as well.)

So, I went on Lupron, which I dreaded since it put me into temporary menopause—knowing, too, I suffered a significant chance of infertility as a result. To be honest, I don’t recall how long I stayed on it, but I do remember dreading each injection, silently.

Eventually, when I was 36, my OBGYN and I agreed that the best-lasting solution to my years of pain and difficulty was a hysterectomy.

Obviously, this was a very difficult emotional, psychological, and physical decision. While my physician assured me he would do all he could to save one ovary and would try to complete the surgery laparoscopically, it all depended on the severity of the condition.

Ultimately, he had to open me up and take both ovaries, as the endometrial tissue was wrapped around everything, finding some in the lung and a fair amount in the bowel, which he was not able to remove.

I did really well for about a year, before my symptoms reemerged—all seemingly impossible, even to my physician, who had always been so believing and compassionate. He’d never seen this before. Eventually, he trusted me, and we went back in for exploratory surgery, only to find that, yes, there was new endometriosis and that one of my ovaries had even tried to start growing again.

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I mention so much of my personal story for many reasons. First, when I suffered through these years, almost no one spoke of or wrote about endometriosis. It was not until I found an excerpt from the late Gail Mazur’s memoir Giving up the Ghost, which I read initially more for her accounting of migraine, that I first read a personal account of someone living with not one but both of these diseases. She writes:

"It was 1980 when I had surgery for endometriosis, and my case was extreme… We don’t know for sure how or why it starts, but we understand something about its mechanism. The endometrium is the tissue that lines the womb, which is shed each month if there is no pregnancy. In endometriosis, these special cells are found elsewhere in the body—mainly in the pelvic area, though they can get just about anywhere…

It is a peculiarity of endometriosis that the pain suffered isn’t necessarily related to the visible extent of the disease. Many women are only diagnosed when they have difficulty conceiving. Early diagnosis is crucial. It must be treated and managed before permanent damage is done” (Mantel. So Much More than a Headache: Understanding Migraine through Literature).

Those who regularly read my writing know I have suffered from migraine disease since I was 14, but I’ve never written about my long-term suffering from endometriosis, much less what the connections between the two might be.

Research has revealed an association between endometriosis and painful migraine headaches. One study published in Fertility and Sterility found that “adolescents who had been diagnosed with endometriosis were more likely to experience migraines (69 percent) than those without endometriosis (around 30 percent). In addition, participants with both endometriosis and migraines experienced more dysmenorrhea than those without migraines” (Wu).

Nonetheless, an established understanding of how migraine and endometriosis are linked has not been determined. Yet the wonderful migraine advocate, writer, and speaker Kylie Petrarca can help us:

“Many commonalities exist between migraine and endometriosis. On average, it takes seven to 11 years to be diagnosed with endometriosis from the onset of symptoms and seven years for an accurate diagnosis of migraine. Comorbidities commonly seen with endometriosis and migraine are interstitial cystitis, irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia, anxiety, and depression.¹ In addition, headache-related disability is also higher among those with chronic migraine and endometriosis” (Petrarca).

Not being a physician, I hesitate to say anything definitive—but if hormones were to have played an enormous role in my ongoing chronic migraine status, I would like to better understand why upon awakening from my hysterectomy, I came into my worst, longest intractable migraine, which led me to chronic migraine, from which I have never recovered.