Pre-Menstrual Dysphoric Disorder, or PMDD, is a hormone-based mood disorder whose symptoms show during the luteal phase of the menstrual cycle — between ovulation and the onset of a period. Affecting about 2-10% of people who experience menstruation, PMDD is currently suspected to be a genetic disorder: a study published by the National Institute of Health in January 2017 showed a link between PMDD and dysregulated responses from a particular gene complex sensitive to estrogen and progesterone.

Many symptoms of PMDD resemble those of other mood disorders such as depression or bipolar disorder, such as tiredness, anxiety, despair, trouble with focus, and lethargy. There are also symptoms that resemble other PMS symptoms, such as bloatedness, breast tenderness, and migraines. The key differences between PMDD and PMS or other mood disorders, however, are severity and cyclicity: symptoms tend to manifest on a regular schedule connected to the menstrual cycle and the effects can be as intense as suicidality, making the condition life-threatening.

PMDD is not a very well understood condition as it is, given its dismissal as a ‘feminine concern’ (like many other conditions assumed to primarily affect women); knowledge of its impacts on LGBTQ people is even less known. Most people living with PMDD, including LGBTQ people, rely on community exchanges of knowledge and experience to get support, or even that first hint of “Wait, this is a thing? I’M NOT THE ONLY ONE?!” — which can lead to them finding the help they need.

The following are stories from LGBTQ people living with PMDD — how it manifests for us, what helps and what doesn’t help, and any challenges or opportunities we have found in seeking help.

1. Creatrix Tiara, Autostraddle Staff Writer, 32, Melbourne, Australia, Queer

I’ve known I had PMDD for some time now and could trace my symptoms back to the first time I tried taking the Pill in 2007, when I suddenly had such severe mood swings that I would collapse in despair over missing the bus. I’ve made some attempts at tracking my moods, including a massive paper calendar with custom symbols, and have noticed correlations between my menstrual cycle and my mood drops.

For me PMDD feels like a very clockwork kind of suicidality. I hear in the back of my mind a voice, oddly calm for how menacing it really is, that goes “I want to set myself on fire”. Everything goes dark and gloomy, like the arrival of a storm at sea. It’s weird how visceral it is in some ways. I also find that my resiliency drops – situations that are difficult but possibly manageable any other time suddenly become catastrophic the week or two before my period. I’ve nearly ruined friendships because of PMDD. Even knowing that it’s just my body being weird doesn’t really make the feeling go away – I just have to sit with it, let it pass, wait for the uncomfortable yet sweet relief of bleeding.

It’s taken me a long time to find a doctor that was helpful: either they didn’t take me seriously (dismissing it as ‘oh it’s just PMS’ or ‘everyone goes through this’) or they are sympathetic but don’t really know what to do with me. I have had blood tests done and my hormone levels are usually ‘fine’, but that’s missing the point of PMDD – it’s not that your hormones are out of whack necessarily, it’s that your body reacts poorly to shifts in your menstrual cycle. There was a study in a university hospital in San Francisco that I wanted to enrol in, but the waiting list was at least a year long and I wasn’t sure if I would still be in the country then.

My therapist in Melbourne, who’s attached to a clinic that primarily serves the local LGBTQ community, got me set up with a GP at this same clinic, who took me at my word about PMDD and helped set up referrals to PMDD specialists pretty much immediately. I think the fact that this clinic worked with LGBTQ people as their core demographic made a huge difference in their willingness to believe me and support me. We tried the Pill again, but for some reason it made walking extremely painful (the pain went away as soon as I stopped the Pill; multiple doctors couldn’t figure out why). I just got Implanon, a 3-year implant that provides a steady stream of progesterone. I’m still nervous because of my bad history with other hormonal interventions, but I haven’t noticed terrible symptoms yet asides from being hungry all the time and maybe denting my sex drive (though that could also be the ridiculous Melbourne summer). So far, so good…?

2. CL, 37, United Kingdom, Bisexual

I’m bisexual & AFAB, currently dating a man. I have a lot of issues around sex because of trauma and I have to admit that even within a very healthy relationship where I have no trust issues, I tend to be just out of the habit of initiating any sexual contact! Because of the trauma my partner is reluctant to initiate too, so the changes in my mood and body image around certain points in my cycle are noticeable!

I’ve always been told that mood swings and feeling physically strange is normal and to be expected, so I haven’t really been to the doctor about it. In early life I was unable to go to school often because of how heavy my periods were, all of which was written off as one of those things no one can do anything about. The knock on effect of that is a lot of self doubt and a tendency to minimise how cycles affect me to the point where I’m not sure whether I would even meet the criteria – checklists online say that I do, but after years of being dismissed as “fine” before I got quite a severe hypermobility disorder diagnosed, my faith in being taken seriously is incredibly low. Almost every interaction with doctors on the NHS has become more of a plea for ANY action because resources are so stretched, GPs seem reluctant to add to a waiting lists that are already commonly over a year in some parts of the country.

For me, the main problems I encounter are a severe uptick in desire coupled with contradictory feelings of unspecific “ickiness”. I’m aware I smell, my breasts are too tender and heavy to touch and water retention sparks a lot of negative thoughts about my body. It’s just not comfortable and so it feels like some kind of cruel irony that the time of the month I feel most desire is when I feel least comfortable acting on it!

3. Sarah Castle, Writer at Schedule My Sanity, North Carolina, USA, Pansexual

PMDD is similar to going to prison two weeks out of the month. Your friends, family and co-workers all know you are there and you are constantly aware of what a major inconvenience that is. Constantly apologizing. Any non-surface relationship you have begins with you prefacing the commitment with, “No really, maybe you should consider the intricacies of this.” Some medications work, sometimes eating right and exercise but nothing is really a cure. You’re always sensitive to the hormones. The never-ending cyclical nature of a mood disorder is what drives most of the individuals suffering from PMDD to want to commit suicide. We feel stuck and like we’re a burden on the world around us. It is important for partners and friends of those suffering with PMDD to understand that thought process.

I’m currently in an incredibly positive and loving monogamous relationship with a CISHET male and the week before my period I want sex – a lot of sex, haha. I think it is those abandonment issues (need for affirmation) coupled with biological urges but that is typically when I have to remind myself of the commitments that I have made and not step outside of my monogamous relationship for additional attention etc. That is when my brain tells me, “You are missing out on exploring your pansexuality…” which I have done effectively and when I met my partner things just worked so incredibly well I didn’t feel the need to date anyone else…but…those few days out of the month my brain likes to mess with me. Sure, I’ll always be pansexual but just like bisexuality, pansexuality doesn’t have to mean I’m incapable of making a decision. I know that it is my brain chemistry messing with me, not issues within my relationship. PMDD has the tendency to be mis-diagnosed as borderline personality disorder or bipolar disorder so when I talked about my sexuality prior to my diagnosis, it was often dismissed as a symptom of more “manic” tendencies. I live in North Carolina, so there may be a more conservative perspective here than larger cities.

You can always tell a doctor or a therapist who has a less approving perspective on gender and sexuality. I’ve taken to only going to PHD’s for therapy (not counselors) because of their tendency to have room for grey area and less black and white perspectives. “Curating” my input so to speak. I’m actually getting ready to write about this idea myself. I want to let people with disease know that they aren’t at the mercy of their current physician. It is “ok” to shop around. It takes time and research but, I think that finding the right physician and therapist combination can make or break someone with PMDD. We can be so irrational at times and that can create some serious abandonment issues and guilt. It is important to talk about those ideas and have someone on YOUR side but… objectively. It sounds silly but they are PAID to care.

4. Lilith, 24, Barbering, United Kingdom, Agender

I was pretty turned off by the fact it’s quite a gendered condition in some medical circles – my doctor was not gendery in her approach when I talked to her about it and she immediately diagnosed it and reassured me that I wasn’t going crazy which was nice. I think for me the issue was predominantly that I had a previous anxiety disorder – emetophobia – and as such found it hard to distinguish what symptoms were due to what thing, as I had long spells of depression and panic attacks with both conditions. After I completed CBT for my emetophobia I was more easily able to look back on my teen years and work out that I was also going through PMDD and dysmenorrhea alongside that.

I went on the Pill when I was 18 and met my current partner who is a cis male, and then came off it for a year to 18 months as I didn’t like the idea of taking foreign, feminising hormones – I identify somewhere on the masculine side of gender neutral and had a lot of internalised misogyny as my face and body are pretty typically feminine, and I have to assert my masculinity quite a lot before I get taken seriously. Little did I know how much better the Pill made me to be around!

When I came off it it was like a trap door opened underneath me – in fact I call my depressive phases with PMDD ‘the Pit’ because it feels as though I’m at the bottom of an endless dark pit. I pretty much was willing to get over my hang-ups as I was pretty much the only person I knew who had benefited from the Pill (another reason I came off – feminist circles in my town were pretty anti-Pill at the time). Since being back on it I only fall into the Pill either first thing in the morning or last thing at night; I’m usually okay for most of the day. What helps is taking my meds, trying to make time to meditate every day (even for 5 minutes) and keeping myself as busy as possible. I’m a typical Capricorn and the more I’m doing, the less I’m overanalysing my mental state!

One frustrating thing is I work in barbering and specifically quite a traditionally masculine, male-oriented barbershop. We do occasionally have female customers and I’m not the only AFAB person working there, but I was suffering really badly in my first few weeks there with PMDD and I didn’t feel like I could disclose to my boss because it is such a ‘gendered’ illness – it is a chronic illness in my eyes and should be taken seriously, but because in the UK PMDD is not the most commonly used name for it – we call it ‘chronic PMS’ – I would not have felt secure having the conversation so early on in my role, especially during a three month probationary period. Even now, halfway through my probation, I have only disclosed to other people with uteruses so I feel as though I have sympathetic allies.

5. Takeisha, 29, Bisexual, USA

Despite telling doctors my symptoms, I’ve never been diagnosed with PMDD. I realized I had it only after combing through old journals and noting the cyclical nature of my depressive episodes. Every luteal phase, I sink into a depression, but none of my doctors cared to do much beyond telling me to eat a healthier diet (I’m a vegetarian!)

But I really gave up being honest with doctors after my husband was put on the organ transplant list and I decided to be his living donor. The medical profession still views homosexuality and bisexuality as “risk factors” due to stereotypes about drug use and sexual hygiene. My husband and I are both bisexual. He’s been on dialysis for more than three years—we won’t risk losing a healthy transplant by outing each other to our doctors.

I tolerate my symptoms by recognizing my mood swings for what they are. I’m not the best self-soother, but journaling, meditation, exercise, and reducing stimulants helps some.

6. Kieryn Darkwater, Late-20-Something, Machinist and Autostraddle contributing writer, Oakland, USA, Non-Binary

Since I was 12, I’ve always had really bad periods, but I noticed exactly how bad they were after getting off of oral birth control in 2011 (I started birth control in 2009). My periods became irregular and fluctuated. I would go months without a period but would be in a constant state of PMS. Eventually my periods became regular again and I was violently reminded of my “womanhood” every two weeks. I only had one week a month where I was actually myself. I would start becoming more depressed as the pain from the cramps increased, I fantasized about self-harm. I felt like a DIY hysterectomy would be less painful than what I was going through. I tried every herbal supplement in the book and none of it was helping my mood or pain. My depression became worse and sometimes crossed over into ideation.

I looked up what PMDD was on the recommendation of a friend and it was like someone was in my head. In 2012 I asked my partner to schedule an appointment with my PCP for me, and I told the doctor about what was happening. She suggested antidepressants (bupropion) which helped with the ideation but not with the pain. I asked about nexplanon but my clinic didn’t offer it. Time passed and they were dragging their feet about getting the training to do the Implant so after about a year I decided to go to Planned Parenthood. The implant helped because it stopped my cycle from happening. Suddenly I was able to stop being plummeted into a hormone inspired depressive spiral that manifested in excruciating physical pain on a regular basis. With that space away from physical agony, I was finally able to realize that a significant contributor to my discomfort was that on top of the period itself causing distress and dysphoria, it alerted my psyche to the fact that my identity and this aspect of my body don’t align.

In December of 2016 I accepted that I was trans and wanted to start HRT. I started with a low dose of testosterone and the effects were almost instant. The hormones that my body needed this whole time were finally there. Unfortunately this also meant that I started getting menopause symptoms so as I increased my dose over time I started getting more and more hot flashes. My suspicion (because there are very few, if any, medical studies on transmasculine health right now) is that the Implant and the Testosterone were conflicting and making the hot flashes intensify. I took the implant out in August of 2017, and have noticed a decrease in the hot flashes. I’ve also noticed my uterus starting to writhe a little again, however, so I’m working on getting a hysterectomy as treatment for endometriosis (which is super likely, given how painful my periods are).

The things I did that helped me the most were antidepressants, birth control that stopped me from bleeding, and finally, starting HRT. I’m hoping the last big piece of this puzzle is surgery. Most of it was a journey of accepting truths about myself and then following that path. When I realized that just having a uterus didn’t mean I had to keep it nor was I bound to the hormones it required – I could be the masculine, non-child-bearing-me that I wanted to be, the next steps got a lot easier.

7. Felicity McKee, 26, University Student, Armagh, Northern Ireland, Asexual

As an asexual person (with an eating disorder) I find PMDD not only triggering but exasperates my mental health issues such as BPD, depression, anxiety. Between the discomfort being upsetting, it’s the mood issues that are worst. I can go from quite depressed but managing to down right suicidal. The slight weight fluctuation also affects my self esteem with the eating disorder.

I’m currently trying to look at contraceptives to stop periods altogether. When I restored some of my weight and it returned it was very traumatic, however my sexuality and illness means many doctors assume I don’t need contraceptives like the implant or IUD. At the moment I’m debating an IUD as the implant has affected some of my friends with mental health Illness due to the hormones, however, it removes the period unlike the IUD. It’s a tough decision. I’m bypassing my GP and looking for a Genito-Urinary Medicine clinic, a one stop clinic to contraceptive needs. It’s getting an appointment that can be problematic. I do worry that if my asexuality comes up that I might face the usual sort of nonsense. One doctor in the past claimed all I needed was to find the right man and have sex. Completely ignoring that that’s a heteronormative bias!

My GP just throws pain killers at me to be honest. Usually I’m stuck in bed and and heat is helpful, I use a mix of single use stick on heat plasters, water bottles and electric blankets. Usually if it’s not too sore I try and rub my tummy, massage style, though I’ve also used a tens machine as well. I can’t use anti inflammatory meds due to my eating disorder as they affect my electrolyte levels. Mood wise I need to be aware of when it’s due so I can try and logically tell myself the sudden surge of emotions will pass. Easier said than done. Weed isn’t legal in UK but you can get CBD without the THC to vape, use as an oil etc. I’m test running it currently for pain Management and mood as I’ve heard good things. I’m skeptical as it apparently misses the THC. I’ve tried distraction methods but usually I just let youtube run on autoplay via my phone and nod off (usually to US politics on CNN, MSNBC or The Young Turks). It can be repetitive and it’s like falling asleep mid movie. When my mental health is poor it almost feels safer to sleep through it, but when in pain that’s a tough one to manage. I find being in pain is exhausting so I can nod off sometimes.

8. Alex Matti, 27, Sex Worker, Melbourne, Australia, Queer

At first, I started sex work to broaden, and gain access to, opportunities. My family was poor, I lived alone, I was young, uneducated and apathetic about what the future had in store for me. So I grabbed destiny by the balls (literally) and squeezed from it what I wanted.

What I hadn’t accounted for was PMDD. PMDD fell on me like a building, on fire, with a nest of bees inside waiting to pound on my honey soaked body (I know that analogy doesn’t make sense but neither does PMDD so it’s fitting). It took seven years to build the confidence (after being outed by an ex), the skills (thanks to the work aspect of sex work) and the education (thanks to the pay of sex work) for a new workplace. I had to learn to navigate stigma which the seven years had prepped me for – but I knew nothing of navigating health to the severity my PMDD manifested itself.

Just as I was ready to step out of sex work and into my new role in society, my PMDD amped up and forced me back into my former role of comfort and ease. Anxiety, depression and PMDD have a perfect synergy, complimenting each other, and where you think you’re equipped to handle one of them, PMDD is a locksmith at funneling both at the same time with great ferocity. While I know sex work is a perfectly acceptable and valid profession, it was no longer my choice, I was stuck in this position because PMDD wouldn’t allow me to move on. I wanted to investigate what else I had to offer, I had been a sex worker since I was 18, and now to be inhibited to such an extent?

Living with PMDD means you live with a long list of ‘can do’s’, ‘can’t do’s’ and ‘should do’s’. If you dismiss the can’t do’s, and decide to have a big night with your friends, you will suffer evidently. If you ignore the can’t do’s, and go with the flow, you risk developing debilitating symptoms that’ll steal precious time and personality you’ll later have to explain to those connected to you. Having PMDD is a full-time gig, and I cannot express how important it is to understand how this condition affects almost 8% of those in reproductive age (probably someone you know and who also doesn’t know!). Because when we finally seek help, when we reach for support, we cannot be dismissed or discouraged when a disorder is, in lived time, unpredictable, chaotic, uncomfortable and inconvenient to explain.

9. Gemma Mahadeo, 38, Writer & Performer, Melbourne, Australia, Queer & Polyamorous

So for all of my adult life I’ve been on at least one antidepressant (since 1999 or 2000), and never really had any issues with PMS. I didn’t really start to notice PMDD symptoms till 2016. I’d had a lot of electroconvulsive therapy treatment courses (2-3 times a week for 2 weeks minimum) and noticed that there would be times when my mood would drop drastically despite there being no obvious trigger. I’m pretty good at managing what upsets me, and looking after myself accordingly.

At the beginning of 2017, the specific type of sadness returned a few times, and nearly was always three days before my period was due to begin. I’d become distressed, start fantasising about suicide being my only way out and sometimes cry myself ‘awake’ or ‘asleep’ in the shower so my parents wouldn’t hear. My father printed out some info about PMDD when I said that I had no history of PMS (I have overuse injuries so menstrual pain rarely is unbearable for me – maybe 2-4 times a year?) and I didn’t understand why my head would just decide literally for no reason.

I went to see my parents’ general practitioner who wouldn’t really listen to me when I said that I felt like it might be worth considering that I had PMDD. I explained that hormonal contraceptives interfered too much with my depression (having learnt this the hard way within the last five or so years) and was reluctant to take them again. She asked for documentation of my history from my psychiatrist. I was too unwell to constantly chase up medical certificates because I was still – occasionally – having outpatient/overnight ECT. I’ve found that male mental health professionals (my father included, to a certain degree) have been more likely to listen to my concerns about PMDD? I do feel comfortable talking to my psychiatrist about how I’m polyamorous and queer, whereas female health professionals seem to want to avoid discussion of it, or assume heteronormativity, which definitely does more harm than good.

I take my day antidepressant in the morning, and mirtazapine at night. This helped me heaps, and towards the end of last year, my dosage was raised because it started to feel like it wasn’t working as well (I couldn’t fall asleep, or would wake up during the night). Some other life circumstances had contributed to that, but it does also help reduce the severity of the PMDD symptoms.

If you’d like to learn more about PMDD, the Gia Allemand Foundation is one of the leading organisations in the field, with plenty of resources and research. The Vicious Cycle and PMDD Oz run active social media profiles on Twitter and Facebook, and the #pmdd and #pmddpeeps hashtags are full of support and conversations. There is also the Me v PMDD app to help track moods and other PMDD symptoms around the menstrual cycle. The maintainers and moderators of all of those resources are very committed to inclusivity for gender and sexuality minorities.

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