PMDD: a life-threatening mental illness

Getting my period is sweet, sweet psychological relief — and not because I'm avoiding pregnancy.

The begin­ning of men­stru­a­tion for me marks the end of the worst phase of my cycle.

PMDD: a life-threatening mental illness 1

My ill­ness gave me a 1 in 3 chance of a sui­cide attempt before age 45 — and about 14 years of suf­fer­ing before get­ting a prop­er diag­no­sis. Even with­in my life­time, pro­fes­sion­als hot­ly debat­ed whether my con­di­tion was "real."

Despite what American media may have told you, menstrual cycles are so much more than "bleeding" and "not bleeding."

I've heard the sen­ti­ment echoed repeat­ed­ly: my friends with PMDD (the worst PMS) and I gen­er­al­ly expe­ri­ence symp­toms a week or two before the peri­od starts. The delay may make it hard­er to pin­point what's going on, but learn­ing the dif­fer­ences among each phase has made all the dif­fer­ence in man­ag­ing my men­tal health.

I finally went on intermittent medication for PMDD in early 2020.

Immediately after ovu­la­tion, I start two weeks of Prozac/Sarafem, then take two or three weeks off once my peri­od starts, and repeat. Most peo­ple haven't heard of such a sched­ule for SSRI usage, but it's hon­est­ly made 2020 the best year of my adult life.

Negative thoughts slip off of me like I'm Teflon. And that was all made pos­si­ble by 7 lit­tle pills every month.

Update: Due to side effects, I am no longer tak­ing flu­ox­e­tine. Nowadays, I'm tak­ing mush­rooms inter­mit­tent­ly — maybe every 3 days dur­ing the "bad phase."

While the battle is over for me, the war isn't over for the AFAB (Assigned Female At Birth) people with premenstrual dysphoria disorder. Let's destigmatize hormone-related mental illness.

Disclaimer

This blog post isn't meant to be an end-all resource, but to talk about my per­son­al expe­ri­ence with pre­men­stru­al dysphoria.


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What is it like to have premenstrual dysphoria disorder/PMDD?

Content warning: depression, suicidal ideation, menstruation

In the sim­plest terms, PMDD (short for pre­men­stru­al dys­pho­ria dis­or­der) is like PMS on steroids, but I also don't think that descrip­tion does jus­tice to how severe it is.

PMDD for me meant being practically bedridden for half of every month
Every visceral sensation that stirred up:
  • My worst, most trau­mat­ic memories
  • The times oth­er peo­ple screwed me over
  • The times I screwed oth­ers over
  • Every wor­ry about whether my exis­tence bur­dened others

…inhab­it­ed my body, rent-free. I intel­lec­tu­al­ly knew that the threats were gone, but the phys­i­ol­o­gy behind the knot in my chest, the throat con­stric­tion, and the fire in my face and ears was all real.

Even when my life was oth­er­wise going well, the flash­backs haunt­ed me, like Black Mirror-esque aug­ment­ed real­i­ty using my brain against me.

It's a mix of debilitating depression, OCD, and anxiety:
  • What if I give in to my rage?
  • What if I snap at my boss or my partner?
  • What if my pain leads me to actions that alien­ate the ones I love?
  • What if those ghosts in my past were right, and every­one around mere­ly tol­er­ates me?
It's like living half a life.

During one half, it was hard enough to sur­vive — let alone hold down a "nor­mal" job. Basic self-care tac­tics felt like train­ing in a gym one day and sud­den­ly being launched into the Hunger Games the next. The oth­er half felt like con­stant­ly clean­ing up mess­es and play­ing catch-up.


What causes PMDD? (And what is it not?)

Premenstrual dysphoria disorder is a heritable, abnormal response to normal hormone fluctuations.

Something goes hay­wire with the recep­tors' sig­nal­ing path­way in the brain, lead­ing to low sero­tonin after ovu­la­tion. It's not 100% clear whether symp­toms hap­pen in the pres­ence of the prog­es­terone (and its metabo­lite, allo­preg­nanolone) or because of the with­draw­al from them.

Either way, PMDD is not the same thing as hav­ing a hor­mon­al imbal­ance, though that can cer­tain­ly make PMS worse! If you have PMDD, it may also be hard­er to fos­ter opti­mal hor­mon­al health by eat­ing, sleep­ing, and exer­cis­ing properly.

I also want to be clear that PMDD is a disorder.

Something is wrong with my hor­mone recep­tors, but that doesn't apply to peo­ple with uterus­es who have symptom-free cycles or only mild PMS symp­toms. PMDD affects about 5.5% of AFAB people.

Furthermore, while there's much over­lap between PMDD and depres­sion, they're not the same thing. Teasing apart the dif­fer­ences between the two means you can find a treat­ment plan that works bet­ter for you.


PMDD: a life-threatening mental illness 3

How do I know if my depression is actually PMDD or PME?

Get to know your body and track your cycles and symptoms for at least two months.

Ideally log for longer than that, if you can. Discern the phas­es of your cycle:

  • Menstrual phase — the actu­al period
  • Follicular phase — estro­gen ris­es as the egg pre­pares to be released
  • Ovulation phase — the most fer­tile phase; estro­gen peaks
  • Luteal phase — prog­es­terone ris­es as the body pre­pares for poten­tial pregnancy

There are arti­cles galore online about track­ing your cycle, usu­al­ly in the con­text of con­cep­tion. If you want a more in-depth book, Taking Charge of Your Fertility is a great start­ing point. It goes into detail about observ­able body tem­per­a­ture changes and cer­vi­cal mucus.

Take the GAD‑7 and PHQ‑9 inventories every week.

They're ques­tion­naires for deter­min­ing how severe someone's anx­i­ety and depres­sion symp­toms are, respectively.

If your depres­sion or anx­i­ety hap­pens pret­ty much only after ovu­la­tion and before men­stru­a­tion, you may have PMDD. If you have symp­toms through­out your cycle, but they get worse dur­ing the luteal phase, you may have PME (pre­men­stru­al exac­er­ba­tion) of anoth­er men­tal illness.

Either way, it's all good infor­ma­tion to note for your treat­ment plan.

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More clues to figure out which menstrual cycle phase you're in

For me, it's mostly about the lower abdominal sensations.

I feel sharp, focused, needle-like cramps on one side at a time dur­ing ovu­la­tion. That's my cue to start my med­i­cine — before I feel the dull, cen­tered cramp­ing of my endometri­um build­ing up. There's usu­al­ly a week of that before the pain inten­si­fies and gets more jab­by for a few days, and then my peri­od starts.

I also notice more subtle changes in my habits.

During ovu­la­tion, I dis­play more ener­getic and manic-like (read: frisky) behav­ior. I'm also more excit­ed about stereo­typ­i­cal­ly fem­i­nine things relat­ed to sex and beau­ty, like sex toys, lin­gerie, and make­up. During my luteal (a.k.a. depres­sive) stage, I may feel inclined to lis­ten to sad music. Think of Deliverance by CHVRCHES on repeat.


Why might it take someone a long time to get a PMDD diagnosis and treatment?

Simply put, I didn't know what I didn't know. Multiple rea­sons accu­mu­lat­ed for me personally:

1. I got my first peri­od at 11; nobody in my life con­sid­ered that a pre-teen could have hormone-related issues.

2. My depres­sive symp­toms were chalked up to "just" being a moody and dif­fi­cult adolescent.

3. The worst part was about 10 days before my peri­od, so I didn't think to link the two at first.

4. During my good phas­es, it was too dang easy to for­get just how bad things were before

5. I was scared of pos­si­ble side effects from birth con­trol or SSRIs.

6. I didn't think that inter­ven­tion was nec­es­sary — sure­ly I could boot­strap lifestyle changes and talk ther­a­py, right?

What were the last straws for me?

I've tried to man­age my men­tal ill­ness through sup­ple­ments, jour­nal­ing, yog­ic med­i­ta­tion, exer­cise, dietary adjust­ments — you name it. I'm a self-improvement junkie. If my knowl­edge about those things could have worked for me, it would have.

Ultimately, I decid­ed that, regard­less of whether I did every­thing "per­fect­ly," I didn't deserve to feel like shit. I could take med­i­cine and work hard to main­tain a healthy lifestyle and not want to die!

Imagine some­one had high cho­les­terol due to genet­ics, and a doc­tor thought that med­i­cine would great­ly increase their qual­i­ty of life and low­er their risk of ear­ly death. Many peo­ple would go for it! But our cul­ture doesn't give men­tal health care the same gravitas.

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Another piece is that, while talk ther­a­py sta­bi­lized me in acute cri­sis, it didn't help me build long-term cop­ing mech­a­nisms. Even when I talked through one issue and "got over" it, my low-serotonin brain would find some­thing else to freak about.

And again, even when my life was great, I'd end up freak­ing out about freak­ing out.

It actu­al­ly helped me out a lot when a coun­selor out­right told me, "PMDD is out­side the realm of what I can help you with." It prompt­ed me to seek the right prac­ti­tion­ers for the job: a gyne­col­o­gist, a psy­chi­a­trist famil­iar with PMD, and ther­a­pists or coach­es with expe­ri­ence in somatics.

It also felt so deeply affirming to hear a psychiatrist say things like:
  • "Oh, wow. You're hav­ing a hard time."
  • "I'm sure you've done your research."

That might sound basic, but when you're a woman of col­or, hav­ing a doc­tor take your ill­ness seri­ous­ly means the world. In some cas­es, it could be the dif­fer­ence between life and death.


Taking medicine for premenstrual dysphoria: my experience

I asked my gyne­col­o­gist what the dif­fer­ent treat­ment options were. They vary from case to case, but here's a quick sum­ma­ry of what to do if lifestyle changes alone aren't enough:

  • Hormonal birth control
  • An SSRI through­out the month
  • An SSRI only dur­ing the luteal phase

I opt­ed for the third option, start­ing with a tiny 5 mg dose of flu­ox­e­tine after ovu­la­tion, and pret­ty much imme­di­ate­ly felt bet­ter. It was kind of wild to expe­ri­ence mild cramp­ing but no mood­i­ness whatsoever.

Update: Again, I don’t take Prozac for PMDD any­more, since it decreased my appetite — I take mush­rooms now.

Take a look at my GAD‑7 and PHQ‑9 results.

I went from a 16/21 (moderate-severe) for anx­i­ety and 19/27 (mod­er­ate) for depres­sion down to a 3/21 and 6/27 dur­ing my first month of med­i­cine alone.

Though the num­bers fluc­tu­ate, they've at times been as low as 0 — no anx­i­ety — and 1 for min­i­mal depres­sion. And bear in mind: that's all dur­ing the clus­ter­fuck of 2020.

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PMDD: a life-threatening mental illness 7

Most of my friends (tak­ing SSRIs for "gen­er­al" depres­sion) told me that it would be weeks before much effect took place, but that wasn't the case for me. They also warned me of ter­ri­ble with­draw­al effects, and I didn't expe­ri­ence that, either.

Depressive symp­toms may return if I miss a dose, but I can take a pill and feel bet­ter again with­in a mat­ter of hours.

And all those terrible sexual side effects people warned me about?

Nothing like that hap­pened to me. They're real, but they don't affect every­one, and they're not the end of a great sex life.

That was… it? Had over a decade of sui­ci­dal thoughts and see­ing red met their deus ex machina?


The end of my internal war? Well, yes, but actually, no!

The truth is that it took me a long inter­nal bat­tle before I tried med­i­cine, and my qualms were valid.

I didn't have a good time with birth con­trol or Celexa (Hello, shit runs! I imme­di­ate­ly stopped tak­ing it) before, and I've been emo­tion­al­ly scald­ed by con­de­scend­ing doc­tors. One of them dis­missed my con­cerns about sex­u­al side effects and said, "The more you mas­tur­bate, the longer it takes to orgasm."

Nobody could blame me for pro­ceed­ing with caution.

I rec­og­nize that what hap­pened couldn't have been dif­fer­ent. How could I have known what to do about pre­men­stru­al dys­pho­ria dis­or­der at 11, con­sid­er­ing that a mere 5 years pri­or, there was a huge con­tro­ver­sy about med­ica­tion for it?

And even then, I was lucky that the first anti­de­pres­sant I took as an adult worked. Not every­one is as fortunate.

Ultimately, psy­chi­atric med­i­cine didn't make me hap­py, but it removed the biggest bar­ri­er. Now, I have a fight­ing chance.


PMDD was and is still a highly misunderstood condition.

Imagine you have head-splitting migraines, but you live in a world where only half of the pop­u­la­tion has any form of headache at all. Those with mild head ten­sion may think you're just using your debil­i­tat­ing migraine as an excuse to be bitchy.

The stig­ma around PMDD is kind of like that. While I can't upheave that by myself, I hope this post helps oth­ers man­age their men­tal health and remem­ber that they're not alone. For fur­ther read­ing, check out the International Association for Premenstrual Disorders.

Do you or some­one you know have severe PMS, PMD, or PME? How have you man­aged it?


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6 Responses

  1. Rose says:

    Thank you for writ­ing this. I've have PMDD and went on birth con­trol to man­age the sui­ci­dal ideation I'd have about — you said it — ten days before my peri­od. It was hell. I was tak­ing all my bipo­lar meds but I was expe­ri­enc­ing some of the worst depres­sion of my life. I got scared that I'd act on the ideation so I went to my gyno and begged for relief. 

    She put me on hor­mon­al birth con­trol and holy hell did my life change (for the bet­ter). I could func­tion again, I could live again, and I didn't have those thoughts anymore. 

    For me, I don't have a lot of phys­i­cal pain. It's just a shit­ton of men­tal pain and insta­bil­i­ty. I'm so hap­py that the birth con­trol worked for me.

  2. Wow. This is extreme­ly infor­ma­tive. I had heard of PMDD before but didn't know the par­tic­u­lars. Thanks!

  3. Victoria Lowery says:

    I had no idea that this was a thing. All I can real­ly say is thank you for writ­ing this

  4. Prudence says:

    Thank you for bring­ing atten­tion to this life-threatening con­di­tion. All too fre­quent­ly, doc­tors dis­miss peo­ple who strug­gle with the psy­cho­log­i­cal effects of hor­mone fluc­tu­a­tions as just being over­ly emo­tion­al. By writ­ing about your expe­ri­ence you have like­ly helped a num­ber of peo­ple real­ize that they should be tak­en seri­ous­ly and that there are treat­ments available.

  5. Trix says:

    Especially dur­ing Covid–where there's so much exac­er­ba­tion and over­lap of phys­i­cal and emo­tion­al symp­toms –this is real­ly impor­tant infor­ma­tion for peo­ple to have. I've always resist­ed the med­ica­tions you men­tioned out of fear of side effects, so it's good to know that those aren't a given…

  6. Hannah says:

    I didn't have PMDD, how­ev­er I have major depres­sive dis­or­der with anx­i­ety and I had post­par­tum depres­sion after my last child. I'm now in the mid­dle of per­i­menopause, and it shocked me that with­out any oth­er major change in my life, I was sud­den­ly in a deep depres­sive episode with sui­ci­dal ideation. One day I just couldn't think straight, I couldn't func­tion, and despite hav­ing a lot to live for, I just didn't want to exist any­more. What I didn't know is that any­one who has either a his­to­ry of depres­sion OR a his­to­ry of PMDD or PPD (hormonal-related depres­sion, is at a SIGNIFICANTLY high­er risk for depres­sion dur­ing per­i­menopause. Even my shrink and my psy­chol­o­gist didn't tell me! And they're women!

    Every woman is at high­er risk for depres­sion dur­ing per­i­menopause or menopause, regard­less of his­to­ry, and the med­ical pro­fes­sion is try­ing to train gyne­col­o­gists and PCPs to more reg­u­lar­ly screen for depres­sion dur­ing the ear­ly stages of perimenopause. 

    Thank you for bring­ing atten­tion to PMDD. I've learned so much about my own depres­sion as I cycled through meds and treat­ments that didn't work. Genetic test­ing for meds helped me a great deal (it's only done through a doc­tor, so the infor­ma­tion is con­fi­den­tial, and it's noth­ing like the com­mer­cial genet­ic test­ing options). Therapy, sleep­ing reg­u­lar­ly, eat­ing reg­u­lar­ly, and a sup­port net­work helps. But I wouldn't be alive right now if I didn't have an excel­lent psy­chi­a­trist han­dling my meds. PCPs are not equipped to pre­scribe psy­chotrop­ic meds, peri­od. It's been 9 months and we're still work­ing on the right med bal­ance, because of how every­thing changed when my body shift­ed into anoth­er stage of peri. 

    You're not alone — and I'm grate­ful that you shared what you've been going through. I swear if men went through 1/100th of what we do, there'd be no issues with fund­ing, research, and insur­ance cov­er­age of psy­cho­log­i­cal care.

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