My chronic illness made it impossible for me to have both a menstrual cycle and a life.
“Maybe I should stop my periods.”
It wasn’t something I had ever before considered and I had, in fact, wondered if there could be potential, unknown, long-term ramifications when friends of mine stopped theirs. I had never considered my periods an inconvenience or gross or annoying; in fact, I had liked the rhythm of them. The times I had been on birth control I resented how it made me feel divorced from my body.
When I asked this question, I was sitting in my doctor’s office, nine months into antiviral treatment for chronic fatigue syndrome, 11 years after starting treatment for Lyme disease. The previous year had been hard. Though I had been significantly healthier than I’d been in a long time and had started running again, working hours that were closer to full-time and going out with friends, every month, in the week before my period, I collapsed.
In these weeks, I felt ragged, frayed; the simple act of my body functioning with regulatory actions felt like too much of a drain. My life required too much of me in these weeks and I’d stumble through work, cancel plans, and do as little as possible. I’d get cold and not be able to warm up again, no matter how many burning hot showers I took; fevers would flash through me, but I never retained the heat and I’d collapse in a heap of fatigue, wracked with fevers and chills, muscle pain, sore throats, and mental confusion again. When my cycle was over, I’d be better than I was during the flare-up but worse off than I had been before my period. Every month, I’d take another step down in my health.
I always wonder how to describe a fatigue so profound it feels like a weighted shroud, especially as so many doctors have not believed me. This is not just being tired, it’s a fatigue of dangerous proportions that feels like an emergency in my body, threatening to take me down again. When I was finally diagnosed with chronic Lyme disease, I’d been sick for over 11 years — 11 years of doctors who refused to believe that I wasn’t just seeking attention, 11 years of worsening chronic fatigue and tick-borne illness. These are diseases that, when not addressed, become steadily more serious and more difficult to treat.
When I was 24, I moved back in with my parents, deep into third-stage Lyme. My hairline had receded dramatically, deep purple rings dragged on my always bloodshot eyes, my skin had gone gray and papery. My body was wracked with so much pain it felt like simple daily use of my joints was causing them to degenerate. I wondered if I would be able to walk in three years. I couldn’t follow conversations, words had lost significance for me, I could no longer read. My inability to engage with the world mimicked that of my grandfather’s Alzheimer’s Disease. I was so tired that I hadn’t laughed in years.
A decade-plus of treatments has stripped me of most of the worst effects of CFS and Lyme (the symptoms often overlap) and returned me to living a life more fully than I had ever been able to before. But I still declined each month with my period, and never quite got back to where I had been before the decline. I was doing better than I had been before I started my antivirals, I told my doctor, but I felt that I would never be doing well — unless I stopped menstruating.
My doctor, Jennifer Sugden, N.D., had treated me for Lyme and CFS with a variety of different protocols, including hormone replacement therapies. But I’d never suppressed my periods before. I had always collapsed the week before my period, but I thought that this was one more thing that would resolve as I got better. Instead, it seemed that the hormone changes around menstruation would always be an Achilles heel.
This is a common experience among patients with Lyme and chronic fatigue syndrome and some other tick-borne illnesses. Dr. Sugden says that when she discusses Lyme and CFS within the medical community of Lyme-literate doctors, they talk about how “women are typically harder to treat and some women really decline before or with her period.” Jose G. Montoya, director of the multidisciplinary division of Stanford’s Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative, concurs, saying that “this phenomena is really pronounced in some women. You don’t have to dig this [information] out…that is so clear in some cases, that the disease is significantly worse right around their menstrual cycle.” He acknowledges that “we will have to be treating women and men differently, there is no question.” (It’s important to note here that menstruation is not just a “women’s issue,” and can affect trans and nonbinary bodies as well.)
So far, the research on ME/CFS has been meager at best and without a focus on female endocrinology. Stanford’s ME/CFS Initiative is currently recruiting subjects for a neuroendocrine study with women of child-bearing ages to hopefully give some answers on this subject. Eventually, Dr. Sugden says, “it wouldn’t surprise me if stopping periods becomes a part of protocol.”
So what is it about periods that can compromise some patients with ME/CFS and tick-borne illnesses so dramatically? Dr. Sugden points to an underlying problem: overworked adrenal glands. The adrenals produce cortisol, which regulates our circadian rhythm, and DHEA, which is the building block to produce estrogen and progesterone. “It’s having to produce DHEA on a cyclic pattern when the adrenals are not strong enough to produce it on a monthly cycle,” Dr. Sugden says about the monthly decline some people experience. “But when you replace the hormones and suppress periods, the glands can focus on healing themselves. You allow the adrenals to NOT produce DHEA and your body can produce cortisol at the rate it needs to.”
My doctor said it wouldn’t surprise her if stopping periods becomes a part of chronic fatigue syndrome protocol.
After three months of supressing my periods, I realized that I hadn’t had any extreme crashes in my health. While I wasn’t fully well, my health was steadier and I was incrementally getting better. Six months later, I was stable enough to start chasing dreams again. I packed up and moved to Mexico City, a place I’d been talking about moving to for years. I never did because I needed my family and my doctors close and I didn’t want to move abroad when I would have to live my life tight, watching to never do too much.
It’s been a year now and I live more easily than I ever thought possible. I’ve settled into my new home and language, work full time, and still have energy left over for friends, exploring, and climbing trips. In many ways, stopping my periods helped give me back my life.