Why I’m Not Celebrating Being PMDD-Free

Twilah Hiari
26
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On December 24, 2014, I had a hysterectomy and bilateral oophorectomy that cured the PMDD I had been fighting for almost a decade. PMDD stands for premenstrual dysphoric disorder, which is a hormone-based mental illness with extreme manifestations and consequences. PMDD is a beast that can transform the most healthy and loving minds into wicked and self-loathing shells of consciousness. And it works that evil like clockwork, each and every month.

So why aren’t I celebrating my freedom from PMDD? My peace and equanimity have been restored. I no longer take any psych drugs. My only prescription is estradiol as a hormone replacement. I love my husband again. The crying fits are over. My motivation is restored. Suicidal thoughts are nothing more than a dark memory that lives in an ever more distant past.

I’m not celebrating because so many of my sisters are still stricken by this disease. They are pleading with general practitioners, OBGYNs, and psychiatrists for access to effective treatments. Yet they remain unheard. My sisters are remanded to the care of mental health professionals who ply them with therapy and scripts for SSRIs, SNRIs, and benzodiazepines, none of which offer long term relief from the horrors of PMDD.

Why are we still suffering when there is a cure? A hysterectomy and bilateral oophorectomy, a relatively inexpensive surgery that rarely has major complications, can permanently end our monthly misery.

I think there are many answers to the question above. First, many practitioners of medicine do not take the complaints of women seriously. Studies show that women’s reports of pain are commonly dismissed by physicians and women’s reports of disease processes are written off as psychosomatic.

This happens in the face of other studies that demonstrate that women, especially those of childbearing age, are affected by hard-to-diagnose autoimmune diseases at a much greater rate than men. Medicine has a very long history of ignoring the legitimate complaints of women. We are frequently handed psychiatric diagnoses before we are offered lab tests or diagnostic imaging.

Many ailments that were once thought to be psychogenic are now known to have a physical genesis. It wasn’t until the 1980s that h. pylori was demonstrated to be the mechanism behind peptic ulcer disease, which was previously blamed on stress. The 1980s also unveiled the etiology of Lyme disease. In the more remote past, epilepsy and Crohn’s disease were also once thought to be psychogenic.

The etiology of PMDD is not yet known. I suspect it is autoimmune in nature and is somewhat akin to an allergy to progesterone. But that is simply anecdote at this point. Another anecdotal observation I have made is that PMDD, dysmenorrhea, and other symptoms of hormonal disruption or intolerance are very common among women on the autism spectrum.

In medical terms, PMDD seems to be commonly co-morbid with autism. But we autistic women are still fighting for recognition because there is an ongoing misperception that autism is a condition that almost exclusively affects males. Autistic women, particularly those of us born before the 1990s, are commonly misdiagnosed with bipolar disorder or borderline personality disorder before reaching a point of accurate diagnosis. Obtaining effective health care as autistic women is an uphill battle that is especially steep and discouraging.

If research into PMDD continues to be set aside because it remains classified as a psychiatric disorder, most theories of PMDD causation will remain anecdotal. And in the meantime, more women will lose their quality of life or in some cases their actual lives.

Women affected by PMDD are discouraged and sometimes outright barred from access to the surgery that can cure us. Many physician’s perspectives are still so paternalistic that they do not believe we should be granted the freedom to part with our reproductive organs, even if those organs are destroying us.

We’re up against a lot in the effort to bring attention and research to PMDD. We’re up against a culture whose instinctual reaction to perceived ‘new’ diagnoses is gaslighting, which is the systematic repudiation of the report of the afflicted person, no matter how legitimate that report may be. Couple this propensity to gaslight people with ‘new’ disorders with a low regard for the credibility of women’s reports to their health care providers, and it starts to look like we have a very long and difficult road ahead of us in terms of awareness and research.

We also face proponents of toxic femininity, who tell us that PMDD is a cultural myth so that they can promote a fantastical feminine ideal where female hormones play no role in disease processes. I’m sure that all of the women with polycystic ovarian syndrome and endometriosis, syndromes that are also frequently co-morbid with PMDD, would love for that fantasy to be true, but unfortunately, it remains a fantasy.

So I’m not celebrating my 2-year anniversary of freedom from PMDD. I can’t celebrate while my sisters suffer. I will continue to use my online platform to advocate for recognition of and research into this disorder, because our complaints are valid, and we cannot remain unheard.

26 COMMENTS

  1. I’m quite sure my doctor, a woman, believed I was neurotic when I asked her to look at a hard, attached mass I knew was cancer. Nope, not to her it wasn’t. I asked her how she knew it wasn’t cancer. “Because it isn’t” was her reply. Itch cream was prescribed. I went back a month later, with what was now a large-ish hard, attached mass. An ointment edged out the itch cream–more staying power. I finally went to a specialist (also a woman), who hadn’t even started the specialized part of the exam when she began saying words like “radiation” and “chemotherapy.” A CT-scan found that it had spread to my liver, and also spawned a secondary tumor, which proved to be highly inconvenient in the long run, because chemo didn’t finish it off and radiation seemed to feed it. One life-changing massive surgery later…(two, if you count the unnecessary one)…

  2. Great article Twilah! Keep up the good work.

    My only criticism is your wording. What you have described sounds like a hormonal problem related to the reproductive system. That would make it a real, physical condition and not a “mental illness” at all. Most of us here don’t believe in mental illnesses as you probably know.

    It’s ironic that you were denied a hysterectomy on the grounds of your psychiatric label. In the old days they sterilized us without our consent. As long as they are the ones who remain in control!

  3. I’m so glad you were able to get help.

    Anecdotally, in horses, some mares become evil due to hormonal problems. It’s called being “mareish.” Some of them attack their humans or become impossible to work with. There are various equine specific treatments available, and many of them do help. Spaying a horse is a major, risky surgery. It’s interesting that in equines the cause of this type of erratic behavior is generally seen as physical instead of psychological and we immediately go to medical treatments.

    Perhaps it’s because an 1100lb animal trying to kill you is very scary.

  4. I’m appalled at the suggestion that hysterectomy be considered the ideal treatment of menstrual difficulties. When we start treating male hormonal issues with castration, I’ll reconsider. Part of healthcare equity is making sure that women aren’t led down the road of easy answers. This piece uses emotional arguments of women not having their medical needs met in order to support that hysterectomy is a good solution to this issue. That’s simply not good logic.

    After my hysterectomy – and the resulting four revision surgeries in five years to repair my permanently damaged vaginal cuff, I warn women against this surgery. There are other ways. Just as it worked for you, it has been a nightmare I regret. I cannot have sex anymore. I will never have sex without severe pain and bleeding again. I was not warned about this possibility, nor did I know how many women end up with intractable pain after hysterectomy – yes it is underreported.

    Yes, women should be treated equitably in medical matters. No we shouldn’t jump into having our ladyparts cut out. There are real risks. They should not be denied just because the surgery itself is unlikely to kill you.

  5. Very interesting article. I really haven’t followed the literature on PMDD. The creation of the diagnosis came way after I had fixed my problem by getting “spayed” (I’m a veterinarian with a PhD in neuroscience and it amuses me to use that term). Until I was spayed I had a lifetime of abnormal hormone levels, very serious bulimia, and other psychiatric symptoms. I finally got to the point where I was bleeding continuously and my Gyn agreed to remove both my uterus and ovaries. I really did not have any idea that being spayed would have any effect on the bulimia, but interestingly, that intense pressure to make myself vomit any food that I ate evaporated immediately. It was very specific, because my other psych symptoms didn’t change. I was fascinated as a scientist, and of course very relieved to have that out of my life.
    However, any time I mention that to a mental health professional, I get a very complicated description of how it has nothing to do with my hormones, per se, but relates to something about my inability to accept my femininity and the hormones associated with being female. blah, blah, blah. It’s all BS. I am of course on hormone replacement therapy, but only estradiol. Over the past years, any time I try to add progesterone to the mix, those same symptoms return. Fascinating and frightening. As you point out, there is so little research about this.
    The popular perception is that progesterone is the wonder hormone and estrogen is the evil hormone. I finally found a few papers describing adverse responses to progesterone in women with extreme PMS, now defined as PMDD. It’s been a while since I looked in the literature, though, so maybe there’s more.
    By the way, I’ve experienced no complications due to the surgery itself. As with all surgical procedures, choose your surgeon carefully. My spay surgery is the only surgery I’ve had that has dramatically improved my life.
    Thanks for discussing this issue, and I agree with you that surgical treatment should be made available to more women who are suffering. But mostly, women’s issues deserve a whole lot more focus and research funding. After a 40+ year career in research, though, and seeing the decline in NIH sponsored funding and the take-over of research by pharmaceutical companies, I despair of any increased focus on women’s issues that don’t have an immediate dollar sign attached to them.

  6. Thank you so much for writing about this. I can’t believe the research on PMDD is so incredibly sparse. I started experiencing PMDD symptoms my senior year of high school. I visited doctors who either told me to “take vitamins” or visit a psychiatrist, even though I knew the symptoms came from my body and hormones. My symptoms lessened with bioidentical progesterone and finally disappeared when I had to radically change my diet to deal with chronic lyme, CIRS, and mast cell activation disorder. Looking back, my PMDD symptoms started the year I had the 3 shot series Gardasil vaccine, and I think the toxicity from that (I have the HLA gene mutations) caused a downward spiral into long-term immune and chronic health problems. To me, it’s so obvious there’s a connection, and yet, it was so, so difficult to get help. Even when I started taking progesterone, I spent the entire following year experiencing fear every month that it would come back, and I’m still working through the trauma of both the illness and how I was treated by doctors (when I told a female doctor that I had a problem with dairy that got worse around my period, she yelled at me that I “needed a psychiatrist”). I felt totally alone and ashamed about it until I read Sylvia Plath’s journals (some scholars now believe she had PMDD). I’m glad you’re no longer suffering from this either, and I sincerely hope that someone figures out how to make more options accessible to women dealing with this.