PMDD - Premenstrual Dysphoric Disorder. When I first discovered it was a 'thing', I was so overwhelmingly grateful because it meant I wasn't going completely insane, and there were other women who also underwent this Jekyll and Hyde transformation every month; the hairline-trigger rage; the can't-get-out-of-bed depression; the crying at every little tiny thing; the all consuming fatigue; at the very worst times, feeling absolutely suicidal; the hating oneself and self-harming. It was such a relief to know it wasn't just me.
I'd had episodes of depression for many years, some mild, some extreme. My earliest ones were pretty benign and may not even have been depression, but perhaps more anxiety related. But in retrospect, I am pretty sure now that they were linked to my menstrual cycle, something I failed to appreciate then. Initially, these blips might manifest themselves as feeling a bit weepy and emotional - classic PMS - but also paranoid, lacking in self-esteem, overly sensitive to criticism, and capable of the sort of self-destruction worthy of Britney around the head shaving incident! Although these incidences were rare, I can still remember difficult moments from my late teens and early 20s where I now think "was I due on at that time? Could that have explained why I acted that way/did what I did?" I also started to suffer from migraines before my periods for much of my 20s and early 30s, which I now know can be due to the drop in oestrogen, but again, no-one really looked at the pattern at the time.
It wasn't until I was in my 30s and I was in an unhappy marriage and job where I wasn't feeling valued that I really remember feeling properly 'down'. Not long after, my marriage broke down irrevocably. I was literally thrown out of the marital home, and in one fell swoop, I lost my entire life. Eight months later, I was so depressed, I was given the choice of going home to be looked after by my parents, or be sectioned. And to be totally honest, I was on the verge of ending it all, and was probably - due to a wonderful friend and my sister - pulled back from the brink just in time. I was prescribed a massive dose of SSRIs, had months of CBT counselling, was looked after by my parents and a few special people, but it took me about 6 months to be completely rehabilitated back into the real world. Fourteen years later, I am still on antidepressants, although on a third of the dose I was on.
I do believe that I am probably pre-disposed to depression (as are other members of my family), but I am equally sure that I am also sensitive to hormonal changes - I was unable to take the pill successfully in my late teens/ 20s, and the 3 month implant sent me totally over the edge in terms of erratic emotions! Interestingly, both my Mum and sister are the same. It wasn't until after my pregnancy that I started to encounter real PMDD, and initially, I was completely bemused, terrified and ashamed of myself as each month, I spiralled downwards into 3 - 5 days of feeling absolutely hellish. I would berate myself for feeling low, losing my temper, being short with loved ones, not wanting to 'do' anything. After all, I had a wonderful partner, gorgeous little boy, a home, a comfortable life, family and friends - what right did I have to be angry/ sad/ fed up/ anxious? Particularly when my life was better by a million times from where I had been. And then on the days where I would lose it with my son, I would physically take it out on myself to alleviate my guilt at having shouted at him; I'd hair pull (my own), bang my head against walls, scratch my arms or hit myself around the head. I would often say things I didn't mean, either verbally or on a message or email to family and close friends, because I couldn't control the white-hot rage, and would refuse to 'take a breath' before responding; I'd accuse my partner of cheating or having an affair, or just 'not caring'; or I'd lie in bed staring at the ceiling, genuinely believing that everyone would be better off without me. I missed events and special treats out because I couldn't face going. And then, as suddenly as it arrived, I'd start bleeding, and the PMDD me would vanish - a malignant wraith who would disappear without a trace, with no regard for the damage she left in her wake.
I'd experienced about 6 or 7 months of these symptoms before, in floods of tears, I was googling about being a shit mother who was unable to keep her temper, and I stumbled across a blog that suddenly described everything I was feeling, and gave it a name: PMDD. I even emailed the blog to my partner, writing "Please read this - this, THIS is how I feel". I carried on searching for anything relating to PMDD, and trying to find solutions, answers, anything that could help. Cutting down on caffeine - yes I can do that; Vitamin B - and that too; exercise - probably need to try harder, but yes, ok; watch alcohol intake - bugger, but yes, I'll try; diarising symptoms - on it! I also tried reflexology, which did work for a bit, and Cranio-sacral osteopathy which did make difference to my mood IF I managed to get the appointment in before the symptoms started. If they had already started, nothing worked. I was already on antidepressants, which is the first suggestion most GP's give (and that's if they have heard of PMDD, which many haven't), and I didn't want to go on the pill, as I knew it hadn't worked for me in the past, and in fact had made me more volatile. After reading up, I did play with upping my antidepressants in the run up to my period, and then lowering them after, and this did have some success in keeping me emotionally a little more level, but the fatigue would still occur.
In time, the PMDD crept from being 2 -4 days before my period, to sometimes being 7,8,9 or 10 days in advance. Being a very regular 28 days, I was pretty good at diarising and putting my symptoms into my wearable tracker app, and I could then add 'the danger zone' to the calendar to act as a warning to my long-suffering partner, and to try and fit in a cranio-sacral appointment, which did seem to stop the extreme temper. But when the length of time began to vary each month, I was still being caught out. After a stressful summer in 2020 with my job (although, who didn't have a stressful 2020!) in the Autumn that year I had a mini breakdown and left my job - and PMDD was a contributing factor. But finally, the GPs started listening too, and began to take note that there were times when I was genuinely feeling suicidal, yet a few days later, I was fine again. I finally was given a referral - for PMDD in conjunction with the heavy bleeding - to a gynaecologist in the spring of 2021, and by then I knew 100% that the only thing I wanted was a full hysterectomy.
PMDD is still something very few women are aware of, and as I discovered, some GPs are still not clued up about - indeed, the NHS website only has a very brief mention of it following on from the PMS page. Having been part of a PMDD support group on Facebook, it was heartbreaking to see the number of women suffering from extreme symptoms, as well as relationship breakdowns, falling out with friends and family, problems at work and sometimes, sadly, even suicide attempts. PMDD is often described as 'like PMS but more severe' which is a massive understatement. However, there is now a growing volume of information about it, although it is still not fully understood why it produces such extreme reactions in some women and not others. The only thing that is really known is that in the luteal phase, the changes in hormone levels that signal to the body to start menstruation have a particular sensitivity for some of us.
If you have reached this page after researching PMDD, I hope you have also found some of the helpful sites listed below, but from a personal perspective, I would thoroughly advise that you keep a journal or somehow diarise your symptoms every single month. Make sure that it is a detailed description of what you feel, what you do, how you cope (or don't) and when it lifts - as it always does. Only by doing this will you be able to give your GP something to go on.
And do try alternative therapies to see if they work - cranial-sacral osteopathy had some benefits for me. For you, it might be reflexology, acupuncture or meditation. A diet full of fresh fruit and veg, high quality protein sources and home cooking does work (my symptoms were often worse when I had slipped out of good habits and over-indulged) and cutting caffeine definitely helped. I have to confess that my wine habit was the hardest one to work at, but again, if I had really gone to town, it showed... And exercise can be a huge help too, if you aren't too fatigued. For me, walking and yoga are still my favourite things to do. But the biggest thing to remember is, it's not just you. There are lots of other women out there who are also struggling with this demon, so reach out to any sort of support group you can find, whether it be in person or on on social media, and embrace the words of comfort, advice and solidarity. You are not alone.
Useful links;
National Association for Premenstrual Syndromes - https://www.pms.org.uk/
Endometriosis UK featuring Vicious Cycle - https://www.endometriosis-uk.org/whatiwishilearned-pmdd-when-its-more-just-pms
Symptoms of PMDD
Emotional experiences
mood swings
feeling upset or tearful
lack of energy
less interest in activities you normally enjoy
feeling hopeless
suicidal feelings
feeling angry or irritable
feeling anxious
feeling tense or on edge
feeling overwhelmed or out of control
difficulty concentrating.
Physical and behavioural experiences
breast tenderness or swelling
pain in your muscles and joints
headaches
feeling bloated
changes in your appetite, such as overeating or having specific food cravings
sleep problems
increased anger or conflict with people around you
becoming very upset if you feel that others are rejecting you.
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