PMDD: A Patient’s Perspective

FOR SIX long years, beginning in her late 20s, Sarah Gillespie lived under the shadow of a condition that few people had even heard of: premenstrual dysphoric disorder, or PMDD. Unlike premenstrual syndrome (PMS), which might cause mood swings or irritability, PMDD plunged Sarah into a state of physical and mental collapse every month. “Due to a genetic quirk,” she explains, “I have a brain sensitivity that makes my body intolerant to its own hormonal changes.”

This intolerance didn’t just affect her mood — it overtook her personality. During the latter half of each menstrual cycle, Sarah would become virtually unrecognizable to herself: “I became catatonic and racked with pain. Dysphoria bloomed in my brain, making me depressed and paranoid. I binged on carbohydrates, needing 3,000 calories a day just to function.”

Each episode lasted between seven and 14 days. Then, like clockwork, the fog would lift — but with clarity came devastation. “There were relationships to repair, overdue bills to pay and excess pounds to lose,” she recalled. “It was the life of Sisyphus: Every month, I roll the boulder up the mountain, only for it to roll down again.”

According to data from the World Health Organization (WHO), PMDD affects 5.5 percent of women of childbearing age. Alarmingly, more than a third of those diagnosed have attempted suicide. In 2022, WHO classified PMDD as a recognized gynecological disease, distinguished from PMS by the severity of its symptoms and their impact on functioning.¹ In addition, a recent study led by Thomas Reilly, BSc (Med Sci), MBChB, MRCPsych, at the University of Oxford’s Department of Psychiatry estimates that approximately 31 million women and girls suffer from PMDD globally.²

The findings do little to ease Sarah’s memories of her own frustrating journey through the healthcare maze. After years of suffering, Sarah finally received a diagnosis and began a series of progressive interventions. From supplements like chasteberry and magnesium to contraceptives, antidepressants and, eventually, hormone replacement therapy, nothing provided lasting relief. As her body aged and her hormones grew even more erratic, her condition actually worsened.

Having exhausted other treatment options, Sarah made the difficult decision to request a bilateral salpingo-oophorectomy — surgical removal of her ovaries and fallopian tubes. It was a drastic choice, but one with a 96 percent satisfaction rate among those with severe PMDD.³ “I was advised that following surgery, all hormone fluctuations would stop,” she said. “I would enter menopause and need hormone replacement therapy until my 50s. It would also make me infertile.”

For Sarah, even this last-resort treatment wasn’t easy to access. First, she endured a trial period of chemical menopause via monthly injections. Rather than providing relief, the injections triggered a continuous 11-month PMDD episode. “I languished in bed and gulped down painkillers and sleeping pills like candy,” she explained. Her physical and mental health also crumbled, and her trust in the medical system was deeply shaken. One physician dismissed her condition entirely, saying, “If it hasn’t worked, that suggests it’s not PMDD… I should probably refer you to a psychiatrist.”

After months of begging, she was finally referred to a surgeon — but the assumption that the condition was all in her head lingered, and her procedure was denied. Undeterred, she says the Internet became her lifeline — not for support groups, but for science. She dug through medical journals to validate her desire for surgery, and her research led her to a European clinic that offered bilateral salpingo-oophorectomy. Sarah contacted the Nordclinic in Kaunas, Lithuania, forwarded them her medical records and was relieved when the staff surgeon agreed to operate. For Sarah, the postsurgical transformation was almost immediate: “I still can’t believe how well I feel. My future unfurls before me without interruption. I have so much time now: time to write, to see friends and family, to travel, go on dates, paint and sing and read and run. Time to cook, as I can now handle knives without fear of self-harm.”

Today, Sarah is no longer at war with her own body. And for the first time in years, she is looking forward without dread: “I don’t need to keep starting again and again and again every month. Life without PMDD is so, so wonderful.”

Still, Sarah remained deeply affected by the years she lost to PMDD. “I still need to reckon with all the time taken from me over the past six years,” she says. “My trust in our healthcare system is broken and will probably never be restored.”