PMDD SUCKS

It is 21st November 2023, less than 24 hours since a mental health crisis. I’m exhausted and a bit numb; so trying to just tick boxes today. E.g. drink water, post Vinted parcel, make bed, ring doctors.

It’s hard to believe that at around 6pm last night I was in a battle with my own brain, a battle to not hurt myself, a battle with an unwelcome guest who I thought/prayed I had long since evicted. Or atleast kept satiated in a small, comfy delux suite somewhere in the deep recesses.

Even as I write this in privacy mode, I am petrified of what people will think. Will they think I am crazy? Do I need sectioning? What if a potential Bumble date sees this and figures out who I am and runs for the fucking hills? What if my voice becomes inestricably linked to this condition and therefore should be questioned/muted/dismissed?

So much of this shame and fear is, I know, felt by all of us with “non-typical” experiences of the world and/or our own minds and bodies. Intellectually, I can see where some of my self inflicted prejudice comes from ( can anyone say internalised misogyny? Because, just to be clear, I could never date someone who thought those things. No thank you. Nah. Bye).

I don’t want to be scared anymore. Not of sharing. It’s hard enough to accept that this condition, at it’s worst, is terrifying. Must I also be terrified of the reception my truth could recieve?

The truth about this awful disorder is that for time immorial, women’s health, hormonal and sexual wellbeing and menstrual health has been ignored, misunderstood and grossly manipulated to suit the patriarchy. When a woman’s periods started, she would “be ready to be a mother.” If a woman liked pleasuring herself she was possesed/neurotic/hysterical/sent to an asylum. The crazy ex girfriend. The needy girl. Difficult. Too much.

So when, as an 11 year old (approx) I was taken into a seperate classroom, along with my fellow ovary owners and told all about periods and puberty, I was both grossed out and excited. I was going to be a woman. An organised woman! I would ask my mother to stock up a cupboard. I would track my periods in my diary. Ok, I may get mood swings but I’ll handle it.

No one really told us the truth at school.

“It’s completely normal.”

“It’s natural.”

We did’nt know how to prepare for a world where men weilded so much power of our bodies; how we dressed them, “improved” them, moved them, fed them, what sanitary products said about them, who we shared them with (or not).

We did’nt know that men/boys were not (at the time) being taught the same lessons as women/girls. Even then, in the late 90s, we learned about periods, sex (for reproduction) and pubic hair.

We did’nt know how intrinsically linked our mentrual cycles were to other parts of our bodies, our mental health, relationships. We definitely did’nt learn anything about the menopause, endometriosis, ectopic pregnancy, pleasure, consent or PMDD.

Why? Well, I hate to say it. After the numerous appointments I had with male GPs (especially of a certain age), deperate for answers, pleading for help, only to be asked (as a 30-something year old woman) : “Have you heard of PMT?” I think I am safe in saying that after a long history of male-dominated medical professions, we are behind. Tragically, shamefully behind. And women are dying as a result.

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Onset of symptoms

I had’nt had regular periods for ten years following surgery to remove my left fallopean tube after an ectopic pregnancy. By the time I was 30, I was tracking my cycles on an App; at one point I was having two periods a month plus spotting, followed by an 80-something day gap with nothing at all.

In 2020, Covid struck. Like many of us, I had bouts of depression and anxiety. Thankfully, I had just moved in with my best friend (who is a fucking hero). I had a boyfriend who was in our “bubble” and, I think, like alot of people with strong empathetic tendencies, it helped to support others through that hard time, rather than pay attention to what was going on inside ourselves.

I remember the migraines became more and more frequent. They lasted longer. My mood would dip dramatically. I would throw up. Crying made the pain worse. I did not know at the time, but I now realise just how closely migraines are linked with Serotonin and vice versa. Every prescribed migraien medication did nothing or made it worse. Sumatriptan, for example, would make the nausea so acute that I could not bare to eat.

Then, quite quickly, my symptoms escalated.

I had always had fairly mild/”normal” PMS; some cramping, stomach upset, moodiness, binge eating, INSANE horniness. My main issue up until 2020 was the unpredicatability of the bloody thing (ha!). Ruined knickers and pyjamas. Date nights becoming slightly more restrained (or cancelled). Swimming lessons etc.

Suddenly, I was getting extreme, breathe stealing stomach cramps. Painful, deep, and lasting for up to 10 seconds a time. My whole body crumpled. My mood spiralled. But this felt so different to “normal” depression.

Imagine being in a huge, echoing, dark room. The voices bouncing off the walls could be yours, but not. They are not you. They shout and scream. They whisper repetitively in your ear. So real, you can almost feel their breath. You feel your entire being shrink, kneel, cower, covering the smallest, most precious light.

Three to four days this would usually last. On the outside, I would try and carry on working from home during the day if I could, ice pack on my head, endless hot water bottles, painkillers. Many, many periods of staring into space then bursting into tears.

Very soon, 3-4 days turned into 2-3 weeks out of every month. The voices in my head were insistent, persistent and loud. So loud. Paranoid. Hopeless. Bullying. And eventually, the voices started telling me to kill myself.

There came a point, I am not sure when, when I told my best friend. I was so ashamed. At a time when Covid was killing indiscriminately, thousands were in hospital fighting for their lives… I was thinking…this. The voices would start again; selfish. Privileged. Mad. Unlovable. What’s the point, really?

I tried to get help. At a time when NHS 111 was almost impossible to get through to due to the pandemic. When I would eventually get through to GPs, it would be dismissed as pretty bad PMS.

I quit my job.

My relationship ended.

I fell out with friends and family.

In April 2021, we moved to a new area in Birmingham. With that move, I registered with a new GP. Dr Aftab. By the end of the first appointment, she had sent off an urgent referral to gynaecology at Birmingham Women’s Hospital. Though, at this point, I felt beyond help, I can not express to you how comforting it was to have just one GP listen and believe what I was saying. To confirm that this wasnt normal. Again, I hate to say it… Dr Aftab was the first female GP I had spoken to.

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My Diagnosis

In the car with my best friend on the way to my first consultation at Birmingham Women’s Hospital, I did not dare have hope. I had become so desensitised, so hopeless. I believe now that, at that point, though I did not want to die, Part fo me had accepted that I would. That one day, I would give in. I did not envision a long term future for myself.

Two hours later, I returned to the car with a diagnosis, a plan and more than I could have wished for…I had hope again.

My consultant, Mr Khan, is a dream. I need to own that when I first met him; a six foot middle aged man, I despaired. Here we go a-fucking-gain.

PMDD: Premenstrual Dysphoria Disorder. An a-typical reaction to typical hormones released during the luteal phase of the mentrual cycle. And yes, I had to google luteal.

• 5-8% of women/humans who have periods in the UK have PMDD.
• 34% of PMDD sufferers will attempt suicide atleast once.
• In 2013, PMDD was classified as a severe depressive mood disorder, this was then cross-listed as a disease of the genitourinary system, which helped in legitimising PMDD as a medical diagnosis worldwide.
• No one yet fully understands why some brains are intolerant of these normal hormones/hormonal changes/fluctuations.

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Treatment

Phase One: Prostap injections. Once a month. Six months.

Prostap (Leuroprorelin) is mostly associated with Cancer treatment but with PMDD it is used specifically to “put the ovaries to sleep.” I.e. a temporary, chemically induced menopause.

Generally, I was told, my menopause symptoms during this time would be similar to what I could expect when I have my natural menopause (between 45 – 55 years old). I would feel strangely giddy that I was given the opportunity to see into the future!

I chose to have the injections in alternating arms, though via stomach is an option. The thought of having a needle in my stomach makes me feel queasy as fuck so… nope.

The needle isnt actually the bit that hurts (in my opinion); Leuroprorelin is a thick substance and when it is injected into/around your bicep it can KNACK. That being said, you learn pretty quickly which nurses have the magic touch.

Those six months, I think I got off easy. Hot flushes, brain fog, night sweats, a few mood dips, crying at cute things, insomnia. But… the PMDD, the dibilitating parts of it… gone.

Phase 2: Introducing HRT and bone scans.

After six months of menopausal symptoms, my periods had completely stopped. I cannot tell you how relieved I was for the relative peace; yes, menopausal symptoms were there and yes, they were often unpredictable but they were manageable. Whereas with PMDD, you are a prisoner, knowing that every month, like clock work, you are going to be tortured. Only there’s a chance that one month, it will all go too far and you wont be there for the next one.

Finally, I had hope. I wasnt living in fear. Breathing space. Fuck yes. Let’s start phase 2.

Prostap can affect your bone density, so scans every so often are a must. After 18 months of treatment (longer than usual because of pandemic backlog), the bone density in my lumber is borderline so I have to take InVita Vitamin D capsules everyday. I am also due my second scan this year.

After trying Tribolone for some time, and noticing that my mood was deteriorating again, I was put on the Evra Conti Patches. The idea is to find a balance with HRT, to give you the amount of hormones that you need to be healthy and functioning, whilst avoiding the reawakening of PMDD ( an extreme sensitivity to normal hormones).

I was fine with one Conti patch for about a year, then I had some spotting and other, mild PMDD symptoms. So I brought forward my bi annual consultation with the glorious Mr Khan (seriously, the man is a legend), and now I am on one and a half patches every three days.

After a pretty serious relapse earlier this week, I will be back in hospital again on Monday (it’s Friday today), to discuss.

The thing is, I could just be adjusting to the extra half a patch. But the relapse was so extreme… I 1 1/4 every three days going to be the next step?

Also, I have found that the week before I have my monthly Prostap injection, I get some mild – moderate PMDD symptoms. I guess it wears off a bit three weeks in. Which is also what I found when I tried the three-month injection last summer, except instead of having to endure 7 days with symptoms, it can be as much as a month. So… never again.

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The Future

Everytime I leave my monthly Prostap appointment, I am filled with (leurprorelin and) gratitude. I love every single one of those nurses. I wish I could put into words just how grateful I am. It makes me well up everytime.

I am currently happy to carry on with this treatment for the forseeable. I see it as an incredible gift. To have my thoughts back. My voice. To not be scared every month.

Mr Khan has the unenviable job of bringing up long term plans at our consultations. He seems fully aware that he is a middle aged, non-ovary-owning man, having to ask a 35 year old, ovary-owning woman if she wants to have children at some. (Not with him, to clarify. Obvs. That would be inappropriate).

I’ve always said I want to adopt or foster, when I am ready. I was fostered. I know how important it is to love and protect children who are not loved or protected. I do feel called to that purpose.

But in the last month or so, it has struck me. Though I want to foster or adopt, and that is what I have always wanted, there’s a new sadness there.

The reality is that, to have a child naturally, I would have to:

• Have sex with a man. (There are currently no takers, though, I havent really looked. Plus, after over 12 months of recovery from an accident, and shagging in the near future will not be for reproductive purposes. I am just checking my hips still work 🙂 )
• Come off prostap and hrt for atleast 6months. Welcome PMDD, pain, suicidal ideation, depression and insomnia back into my life! HAHAHA no.
• Have pregnancy hormones plus PMDD.
• (This one isnt for sure but) It is still frowned upon by some doctors to be on Anti depressants whislt pregnant/breast feeding.

Alot of women with same diagnosis and treatment as me, decide to have a hysterectomy.

And I… I don’t know yet.