Jasmine, 23, is originally from Hull but now lives in London. She started suffering with what she now knows is premenstrual dysphoric disorder (PMDD) while at university in Manchester. It has affected her life and sense of self, but getting a diagnosis made it easier to deal with.
The only way I can describe it is like the most intense comedown. It’s like all of the serotonin has gone from your body – it is absolutely horrible.
Even if I can compartmentalise the depression aspect of my PMDD, which these days I can for the most part, the anxiety I experience is almost unbearable. I’ll have about four days a month, usually kicking off on the eve of getting my period, where I can’t sleep at all. I get insomnia and, if I do fall into sleep, I end up having panic attacks when I wake up. I just feel so low and incredibly unwell, and this leaves me at risk of a panic attack throughout the day as well.
Normally, I’m a really big coffee drinker. We’re talking up to four a day (I know!) but, during this time, if I touch anything caffeinated – even a chocolate bar – it’s enough to set me off and bring on a panic attack.
This is a whole load more than experiencing cramps, craving Dairy Milk and getting a bit teary at a cute cat video.
For a long time, I didn’t know what was wrong with me. These four days a month felt like a permanent state of being – I couldn’t see any gaps or respite – this was just my life. Before I hit puberty I was fine – I was happy, carefree and calm. I thought I had grown up into an adult who was in a permanent cycle of severe anxiety and depression. I definitely felt suicidal at points.
I now know that I am somewhere in the 3-8% of women who have something called PMDD or premenstrual dysphoric disorder. As you’ll gather from what I describe, this is a whole load more than experiencing cramps, craving Dairy Milk and getting a bit teary at a cute cat video.
It’s really difficult to explain to someone who hasn’t experienced PMDD because a lot of women experience PMS mood swings to some extent – but this is much more extreme.
I must have been about 16 years old when I first when on the pill. I remained on it until I was 20, trying various different types which all made me feel unwell. My mental health dropped off a cliff. I also experienced a lot of anger, I turned into a really aggressive person and was het up all the time. It was awful.
When I came off the pill (after a boyfriend suggested it might be making things worse), the cycle of depression and anxiety was a bit better but it was still a lot to handle. I was left with a real spike once a month; it’s so up and down.
I couldn’t get out of bed, I couldn’t do anything. I couldn’t find the strength to go to lectures – it felt like everything had gone grey, all of the positivity was sucked out of the world. I had extremely neurotic thoughts.
I felt (and still feel) like I’m on a monthly conveyor belt of rising through depression into extreme anxiety, only to go back to the start again. It’s like my body flushes itself out and then I’m back to square one. It’s all wrapped up in what I would call a really intense malaise.
When I was no longer on hormonal contraception, I realised there was something really, really wrong. At uni, I spent two years completely debilitated by my PMDD. I couldn’t get out of bed, I couldn’t do anything. I couldn’t find the strength to go to lectures – it felt like everything had gone grey, all of the positivity was sucked out of the world. I had extremely neurotic thoughts.
It was around this time that the doctor thought I might be suffering with polycystic ovary syndrome (PCOS), so I was keeping a diary of my physical and mood changes to show her. This was when I started to put two and two together – I noticed that the devastating periods of depression were coinciding with my periods. This was the first time that I was able to track the two in conjunction.
I think part of the problem, and I know other women feel this too, is that because there is so little awareness of PMDD, young women like me don’t know to look out for the signs. Before I started period-tracking I felt like I was depressed all the time because it was coming so thick and fast – but when I slowly started to work out what was happening, I felt more in control.
When I went back to my GP and explained what I was seeing and feeling, they were actually really good. That’s when they first mentioned PMDD and told me that I might have it. I know I’m one of the lucky ones, in a sense, because some GPs have never even heard of PMDD.
When the doctor told me about PMDD, I felt like some missing pieces had suddenly clicked into place. I thought, 'At least I have a name to call this by now – it’s not a version of something that I’m creating in my head'.
15% of women who suffer from PMDD attempt suicide.
That said, I still had to push quite hard for an official diagnosis. They were willing to say that they thought it was PMDD but they didn’t really offer me any solutions. I kept going back and, after a few different appointments, I was eventually – a few months later – offered therapy on the NHS.
But when you think about the fact that an estimated 15% of women who suffer from PMDD attempt suicide, waiting longer than a week or so for proper help isn’t really acceptable.
PMDD is so serious, so severe and, in some cases, so life-threatening that some women opt to have a hysterectomy to try to stop it. This isn’t risk-free; while it can be an effective cure, women who opt for a hysterectomy must go through HRT (hormone replacement therapy) to make sure PMDD isn't replaced by menopause-related mood problems.
Sometimes, I think of PMDD as a weird, warped, halfway house. You don’t feel you’re fully qualified to say you suffer with depression because it’s cyclical and closely tied to your periods but, equally, it affects you enough day to day, week to week, that it’s a regular feature of your life.
If you have PMDD, you feel like you’re in a loop of pulling yourself up the rope only to slide back down again. I wouldn’t say I’m fully in control of it now – even with therapy – but at least I am aware of what is happening to me. I really do think knowledge is power.
Awareness is great but this is still an inevitable thing that I have to go through. Knowing it is happening doesn’t make it better, it just makes it easier to deal with. I now have the copper coil and it is the best decision I ever made but I think we urgently need more research into PMDD and better treatments.
When it comes to women’s health I feel like there is a very sexist, dismissive attitude. Nobody wants to sort it out or look into it. It’s like, 'Women have the pill, they can have sex without getting pregnant, what more do they need?'
PMDD is like so many mental health issues: we can talk about it until the cows come home and of course that’s important. But that won’t help us find new treatments, educated GPs or help those suffering. As for whether there is a link between PMDD and the hormonal contraceptive pill? I’m sure we’ll find out eventually; just give it 50 years.
If you have been affected by any of the issues raised in this article and would like to talk to someone, visit Mind, call 0300 123 3393, or text 86463.