For years after I started my period, I struggled with a condition rarely talked about or written about—a condition that I was diagnosed with much later, in my late 20s and early 30s—endometriosis. While I’m thrilled to see now that much more is known about endometriosis, and that the topic is discussed, researched, and shared through support groups, many still don’t know or understand the comorbidity of migraine and endometriosis.
Migraine expert and advocate Paula Dumas learned about the connection the hard way, much like I had: “‘The day I woke up from hysterectomy surgery, I learned that I had severe endometriosis. It was so severe that it had backed up into my appendix, which was about to burst. So they removed that, too.’ Dumas’ migraine pain had been so intense, it cried louder than her endometriosis pain and overshadowed its symptoms” (Glaser).
Like Dumas, I had suffered with both conditions for years, but it wasn’t until I woke up from what ended up being a complete hysterectomy, required by the severity and spread of my endometriosis, that I screamed out with the worst migraine I had ever experienced. In fact, it was that day when I went from being an episodic migraine patient to a chronic one. I suffered for weeks before the intense migraine pain relented, and I was then left to the realization that in my 30s I was now in menopause.
In a 2022 article in The New Yorker, writer Hilary Mantel discusses her endometriosis, which was eventually identified in her late 20s, but not before a hysterectomy. (A few years later, hormone replacements would double her weight.) The prodromal migraines, however, never went away. “‘I had known days of my life when everything hurt,’ she explained, and yet ‘it was within the migraine aura that my words came out wrong.’ The headaches unmade the world around her. Language faltered in the face of indescribable pain'” (Yu).
What Is Endometriosis and What Are Its Symptoms?
Endometriosis is a painful condition in which tissue similar to the inner lining of the uterus grows outside the uterus. It often affects the ovaries, fallopian tubes, and the tissue lining the pelvis. Rarely, endometriosis growths may be found beyond the area where pelvic organs are located. I even had it found on my lung and in my colon.
Common symptoms include:
- Bloating
- Constipation
- Cramping between periods
- Irregular periods
- Pain during intercourse or a bowel movement
- Painful periods
- Unusually heavy periods
I had never made the connection (nor, many years ago, had my physicians) between the two life-changing conditions. Apparently, though, much more attention is now paid to these as comorbidities: “In fact, among women with endometriosis, as many as 43 percent also have a migraine diagnosis, according to a 2021 Endometriosis in America survey. So we know it’s common for women with endometriosis to also experience migraine or menstrual migraine, but we don’t know the connection between the disorders. Theories abound around hormone imbalances, central nervous system pain sensitization, inflammation, and genetics in the connection between migraine and endometriosis” (Glaser).
What we don’t yet have a good grasp on, however, is why there is a connection, though there are some strong theories: “The relationship is most likely dependent on a number of factors including the body’s response to the endometrial-like tissue, genetics and hormonal imbalances. Interestingly, a study found that a majority of women experienced migraine attacks after their endometriosis diagnosis rather than before their diagnosis (78.8% vs. 21.2%)” (Petrarca). Experts agree that significantly more study needs to take place.
If you have been diagnosed with both conditions, be certain your physicians are aware of the other condition, so they can work together to manage them. The following quote by Mantel, speaking of endometriosis, could almost as easily be focusing on migraine, as so many of us have suffered from both:
“It is not easy to talk about a condition once dismissed as ‘the career women’s disease.’ But women will continue to suffer until we realise the cost of ignoring it.” —Hilary Mantel