I Was Misdiagnosed With Bipolar II: Medical Menopause Saved Me
For 26 years I have battled an extreme form of Premenstrual Dysphoric Disorder (PMDD). I have not openly shared my story beyond a handful of people because of the stigma associated with menstruation and fear of being tagged as overly emotional and professionally handicapped. I am sharing my story now because I have found relief from this terrible condition, and I want others to find it too.
PMDD is caused by an abnormal reaction to normal fluctuations in hormones. The myriad symptoms—which can include debilitating sadness, anger, and suicidal ideation—appear like clockwork each month. They start in the luteal phase of the menstrual cycle and last about two weeks. Menstruation brings blessed relief, and life goes on symptom-free for roughly two weeks during the follicular phase until ovulation. And then the hell begins again.
The estimates of the prevalence of PMDD are remarkably varied. Looking at the literature, I have found estimates ranging from 1.2 to 12percent of menstruating women. This in itself tells you something: there is a lot we don't know about the condition. There simply aren’t enough studies on PMDD.
The majority of the research on PMDD and its treatment that does exist is in the realm of mental health. Yet, as I have learned the hard way, psychology offers no “cures,” only band-aids. You can do all the DBT and CBT and take all the SSRIs you want; you will still have PMDD.
Apart from preventing self-harm and helping me make it through the day, these treatments did little to alleviate the debilitating impact of the condition. That's because PMDD is not a psychological problem; it’s a hormonal one.
I am an accomplished professor and scholar. I have published a book and taught at leading research universities. But my career never took off primarily because I spent two weeks out of each month essentially handicapped.
Five years ago, at the age of 36, I was told I had Bipolar II and given heavy antipsychotics. I found some relief: no more deep, enveloping sorrow, no more lethargy, no more anger.
But the side effects were horrible. The medicine constricted my throat and my nasal passages so I couldn’t breathe easily or swallow. I took it at night, and it dragged me into a deep, impenetrable sleep. I woke up incredibly groggy, to the point where my husband and I agreed I shouldn’t drive. Still, I continued taking the medicine (and my doctor kept prescribing it) because of the blessed relief it gave me.
I knew I had PMDD. I never believed I was bipolar, but my psychiatrist did. Why else would I have such cyclical symptoms, she reasoned. Why else would the medicine (Seroquel) work?
I looked for second and third opinions, going to clinicians at two preeminent institutions for women's reproductive health, Massachusetts General Hospital and the University of North Carolina, and the answer was to tweak the drugs and manage the symptoms—in essence, live with it.
Meanwhile, dosed with heavy antipsychotics, I was losing functionality. My thoughts were disordered and I struggled to find words, making being a professor and public speaking impossible.
I lost my job. I became convinced I had early-onset Alzheimer's. It was terrifying.
Ten months ago, I did what all the mental health experts I consulted warned me against and what I had been resisting my whole life—I turned to surgery. As a precursor to surgery, I started monthly injections of the GnRH agonist Lupron to simulate what it would be like without ovaries.
In medical menopause, I instantly felt better. For the first time in my life, I experienced what a normal month was like. It is amazing.
But the surgeon who prescribed Lupron (erroneously) told me I could not be on the medicine longer than 12 months. So at month 10, I began mentally preparing for radical surgery.
The surgery commonly recommended for PMDD is a bilateral salpingo-oophorectomy, the removal of both fallopian tubes and both ovaries. It carries a number of risks, including infection of the incision, bladder, or lungs; blood clots; organ damage; and Ovarian Remnant Syndrome. Moreover, women in a number of forums have complained of complications and side effects.
Given the enormity of the procedure, I decided to consult a second surgeon. The result was revelatory: “I don’t recommend you remove your ovaries unless you absolutely have to,” she said. “And you don’t have to.”
She told me about another medication, Myfembree, that she would be willing to prescribe off-label for the next nine years (until I reached 52, when most women go into menopause). She would also continue to prescribe Lupron with HRT add-back if need be.
I began to cry. The relief was overwhelming.
Will Myfembree work as an alternative to Lupron? Will my insurance cover the prescription? I don’t know. What I do know is that as long as there is a pharmacological solution to my PMDD that works completely, I refuse to get surgery. I will also never go back to a life with PMDD.
The bottom line is this: the mental health profession is misserving and misdiagnosing women, including with Bipolar II. PMDD is a medical problem, not primarily a psychological one. We need to start treating it that way.
