Warning: This article includes descriptions of suicidal ideation.
"I wouldn’t have made it until my next birthday," Hannah* tells Refinery29. She's serious. Two years ago, she was about to turn 36, had two children, a bipolar diagnosis and suicidal ideation which had reached the point of no return. But Hannah didn’t have bipolar, despite spending the past 10 years trying to treat it. She had premenstrual dysphoric disorder (PMDD) and like many sufferers, it was making her feel so bad that she was seriously considering taking her own life.
PMDD, like every other condition we’re exploring in Uncharted Bodies, is under-researched, under-treated and under-diagnosed. It is colloquially referred to as "very bad PMS". But while roughly 90% of women and people with wombs experience some sort of mood turmoil around the time of their periods, an estimated 5-10% experience PMDD: a condition so serious that a study found nearly one in five people who have it consider suicide.
It was only in 2013 that PMDD received formal inclusion in the internationally recognised Diagnostic and Statistical Manual of Mental Disorders (DSM-5); previously it was a hotly debated topic as to whether it should be considered a formal disorder at all. Nada Stotland, psychiatrist and president of the American Psychiatric Association, worried at the time that diagnosing women with PMDD may prevent other serious mental health conditions or circumstances (such as domestic abuse) from being recognised. Now, though, there is evidence to suggest that almost an opposite issue may be occurring whereby women with PMDD are wrongly diagnosed with another illness: bipolar. However, despite many women discussing their experiences online, due to a lack of research it is tough to say just how many times this misdiagnosis has occurred.
Hannah is one such woman. From 12 years old she suffered crippling periods and her mental health problems led to a bipolar diagnosis at 26. At 36 she finally linked the two together and it became clear that she didn't have a mental health disorder, she had an endocrine (hormonal) disorder: PMDD.
Here, she tells us how she finally got the correct diagnosis and how a hysterectomy changed her life.
"The point I realised there was a big problem was after I had my second baby in 2016. There’s a window of tolerance where the doctors say, ‘If you get postnatal depression, we’ll be here for you.’ I had a health visitor come every month to check on me because my mental health was really rubbish and then, after a year, she signed me off, saying I seemed to be coping.
It was then that I started getting more and more distressed. And it began to happen regularly. I ended up feeling like I didn’t want to be here anymore. True suicidal ideation is one of the most taboo and least discussed aspects of PMDD. I felt like I wanted to take my life because I felt so horrific and yet there was nothing necessarily around me that appeared to be triggering it: I knew I was in a safe home, a loving relationship with a loving family but something was happening to me and I couldn’t communicate it. And then it would go away for another month.
It was my husband that first noticed. He said, ‘A week before you get your period, you go into this huge depression.’ Obviously when a man says ‘Oh it’s your period’ you immediately get your back up but he’d spent five months watching me say ‘I don’t want to be here anymore’ and then my period would start. And so I started googling it. I had never heard of PMDD before. I’d been diagnosed with bipolar 10 years previously but I hadn’t had any medication that worked. So I knew something was going on with my mental health but this was the worst it had ever been in my life. I also had symptoms like muscle ache, and my eyes were hurting.
I decided that if I was going to go to a doctor, I wanted to go to a female doctor because I didn't believe a male doctor would understand. When I was having my children I met a lot of male consultants that were really dismissive of my mental health. There are amazing male doctors but this issue felt so sensitive. I didn’t want to be labelled as someone that needed to be sectioned, or that my kids might be in danger because I’m saying I want to kill myself.
I spent years going to doctors and telling them I felt terrible but no one, at any point, went 'Maybe we should track your period.' I could have had help 10 years ago.
When I went to the (female) doctor I said, ‘This is my last-ditch attempt to figure out what’s going on. I feel terrible, I feel suicidal. And it’s happening every month.’ I told her that next month was my 36th birthday and I didn’t think I was going to make it. And she said, ‘You’re the third person I’ve met like this in the last few years. I’m part of a study at the university hospital, let me call my consultant. I’m going to take you seriously.' And she did. I was diagnosed with PMDD in March 2018, I had my hysterectomy in December 2018 and I have never felt better than I do now.
If I had wanted more children, I would have had to go down a different route. A lot of women don't or can't have a hysterectomy. I was 'lucky'. I think only women who have got to the point with PMDD where they want to take their own life would understand how much of a relief it was. It's the only reason I'm still here. I'm here because that doctor listened to me and got me fast-tracked to surgery.
I spent 10 years wandering around the mental health system, not being helped because at no point, even when I was diagnosed with bipolar, was my period ever put into the assessment. If it had been, they would have seen like clockwork my terrible mental health symptoms were manifesting at exactly the same point as this specific hormonal phase.
I spent 10 years going to doctors and telling them I felt terrible, then going through CBT for six months, going to different talking therapies for six months, trying sertraline and not reacting well, trying different antidepressants, trying holistic therapies... I spent so long trying to figure out why I wasn't feeling well but no one, at any point, went 'Maybe we should track your period.' I could have had help ages years ago.
I can't think of a good reason why [period tracking] wouldn't be thought about because it's a woman's physiological experience that is like clockwork and at some point someone needs to put two and two together. I'm just lucky that for me, that someone was my husband.
As women we're told, 'It's just your period, get on with it.' But that in itself is incredibly toxic because I had never had a good period. They were incredibly painful from age 12, which means 24 years of menstrual distress. I was taking over-the-counter codeine to cope for a long time; I was self-medicating so I didn't have to inconvenience people, or the health system, with another round of mental health assessments I knew wouldn't work. I was papering over the cracks. You're like, 'It's just under a week each month (a week which people call Hell Week) so if I can just get through that, I'll be okay.' But of course you're not.
Because of this, I think there's a lot of hidden sufferers. A lot of young women who wonder what's the point in going to the doctor because they're thinking it's a mental health issue when actually it's a menstrual health issue. There's also fear of judgement because when you talk about menstrual health you immediately think about sexual health, and it's not. The Victorian meaning of the word 'hysteria' comes into it, too. During my PMDD episodes I would be hysterical. Hysterical with grief and anger and upset and stress, which should be okay to feel because women are dying from this. But that Victorian language has [infiltrated] healthcare providers unconsciously and we need to start rethinking what hysterical means.
I was lucky because I wasn't put through any difficulty trying to get a hysterectomy because my doctor heard me. But for many people I've met in support groups, trying to convince your doctor to put you forward for one can be really hard. First, they put you on a chemical menopause for six months with a nasal spray. It gives you an idea of the relief you could experience to check you're comfortable with the new version of you and they're always asking you if you're sure you don't want any more kids and I knew I didn't. I think the fact that I had kids and my age meant they didn't push. It might be harder for younger women.
I didn't have bipolar. With PMDD you do get depressed and then you do feel better and you get a lot of things done because you have your energy back so it might seem like you're being hyper manic. But the PMDD depression is different from manic depression because it's related to your hormones, there's nothing you can do about it. They only leave your system when your body decides that you're going to start bleeding.
Some women of course might have more diverse mental health conditions: premenstrual exacerbation disorder (PME) is something where your hormones pre-period make your already-there mental health symptoms worse. There's an app called Me v PMDD where you can track your cycle and your mental health which I've found really useful to keep an eye on how things are going because when you're in it, you can't think clearly. You need to track yourself the whole month so you can see that when you do get really ill, there's a pattern.
It's a joy to feel well after being so ill. I had to not make plans or not put in work meetings because I didn't know how well I was going to be. But the amount of people I talk to about PMDD who don't know what it is now worries me. If we assume that the majority of women menstruate then we've got a lot of girls and young women who potentially have a bipolar diagnosis that actually have PMDD. I think we've got a hidden epidemic."
*Name has been changed
If you are thinking about suicide, please contact Samaritans on 116 123. All calls are free and will be answered in confidence.