Josie Burden, 33, from Devon, suffered from premenstrual dysphoric disorder (PMDD), a severe form of PMT for nearly two decades until she was finally diagnosed. It is thought to affect one in 20 women. Here she shares her powerful story.
“My battle with premenstrual dysphoric disorder began when I was just nine years old and I started my period, but it wasn't until a painful two decades later when I was almost 30 that I knew what was wrong with me.
I was only 11 when the doctor put me on the pill because my periods were so heavy that I’d feel sick, exhausted and in agony. Even more alarming, I started to experience severe paranoia and delusions, hearing voices in my head and believing that people were watching me. I was so unwell that I’d have to take a week off school every month.
I developed extreme anxiety, became very withdrawn and even had suicidal thoughts. There was a pattern to this. I’d feel normal for two weeks of the month and completely unwell the other two. I’d get my period and think, ‘Oh, I'm fine now,’ but I somehow didn’t connect it to my cycle, I just thought ‘I'm literally mental half of the time.’
Felt like two different people
My mental health got gradually worse as I got older but I was very good at masking these feelings from my family. Mum and dad would find dark poems I’d written in my room and ask, ‘Do you really feel like this?’ but I’d deny it because I didn’t want to upset them. They just put it down to being a moody teenager.
I was two different people, there was this monster who took over at certain times. I’d think, ‘It's me. It's something I've done. It's my shame.’ I got in with the wrong crowd and did things I shouldn’t have done to mask the pain. I self-harmed – I never cut myself, but I’d hit myself, drink too much and take drugs. When I was at my worst, I was good at isolating myself. Friends just thought this was me, it was just the way I was.
When I was 17, I finally confided in my mum. I was exhausted and couldn’t work, so we went to the doctors and I was put on antidepressants, but they didn’t help. I was also having seizures, which I now know was because of the PMDD, and that led to me being misdiagnosed with epilepsy.
I was given mood stabilisers and that’s when I was probably at my most sane. For two years, I held down a job in retail. But then, because I was no longer having seizures, I came off the mood stabilisers and became unwell again. After that, I was either out of work or had long-term absences.
At 19, I had a termination and that saw my mental health decline further. Over the next few years, I was misdiagnosed with cyclothymia (a similar disorder to bipolar) and emotionally unstable personality disorder. The GP dismissed me and never even did a blood test to check for hormonal issues or arrange for me to see a psychiatrist.
By 26, I got together with my partner Scott. We’d been friends for 10 years and he knew I’d had depression, but knew me more of a party girl than who I really was. A year later, I got pregnant and, because I wasn’t having a monthly cycle, I felt the best I’d ever felt. Yet, after my daughter Aubrey was born in 2018, I hit rock bottom.
I felt suicidal and became convinced that a family member and a health visitor were conspiring to take Aubrey away from me. I was so paranoid and convinced that I was being watched, but I tried to mask it until I couldn’t any longer.
When she was two months old, I had a psychotic episode where I felt like I was in a glass box trying to protect Aubrey and everyone who had ever hurt me was surrounding me. It became obvious, to me and everyone around me, that I was having a mental breakdown and I had to tell someone I felt actively suicidal because it got to the point where I thought, ‘I have to say this out loud or it's going to happen.’
We rang the perinatal services and told them I really needed help. I was diagnosed with postnatal depression, tried all the medications under the sun and had CBT, which helped for a while, but then I would become irrational, hopeless and detached from the world again.
Mum can remember me sitting at home and the colour just draining from me. It was like I’d lost the protection of my emotional enamel and couldn’t cope with anything. I gained a lot of weight, too, and I’d look at myself and didn’t know who I was. My brother told Mum he was worried I was going to take my own life.
It took a village to help me and to help look after Aubrey. My mum was a mental health nurse and took long leave absences and eventually retired early, so she was effectively my psychiatric nurse, and Scott took a lot of time off work. We were all in survival mode with everyone just trying to protect me and my daughter.
Signs of hope
One day my dad commented that it seemed like every two weeks I couldn’t cope and we started to realise there was a pattern and had been all along. Eventually, at the end of 2019, I went to see a gynaecologist who said she thought I had a history of, at the very least, severe PMS.
She saw my medical history, rather than me, as complex and I finally felt like it wasn’t all my fault. I had blood tests, which showed I had premature ovarian insufficiency and a severe lack of oestrogen – after I had Aubrey, the doctor had put me on a progestogen-only pill, which turned out to be catastrophic. It explained why my mood was so low and why I put on so much weight. If you don’t have enough oestrogen, you can become insulin-resistant and your body just doesn't burn fat.
The gynaecologist started me on oestrogen replacement therapy, and for two months, I felt better, but then my mental health declined again, and we began to discuss PMDD. I read up about it online and connected all the pieces of the jigsaw. Everything about my life began to make sense and, by September 2020, I was finally diagnosed.
Three months later, I had weight loss surgery and it was agreed by my gynaecologist that I would start chemical menopause and, because I was so hormone-sensitive both mentally and physically, that I may need a hysterectomy.
I agreed immediately. It was like, 'I either die or I do this.' No one wants to go into menopause surgically and 20 years too early and it meant Aubrey would be my only child, but it shows just how unwell I was. I was desperate and there was no other choice.
Read more: Can your period really get stuck?
Before surgery, I had injections to basically turn my ovaries off to see if I would still be mentally unwell and, after two months, I started to feel genuine joy for the first time in my life. I remember being in Tesco with my mum and crying, asking, 'Is this how everyone feels?' I was calm, like a pink clouds feeling, when you finally see the world in a good light.
A new outlook on life
That summer, I had my ovaries and fallopian tubes removed and started psychotherapy. I was learning how to walk again emotionally because I didn't know how to have a conversation with someone or leave a room without thinking that everyone was talking about me.
I finally started living my life. I could go out and do things by myself – my daughter was three and a half when I took her out on my own for the first time. I’m now in my second year at uni studying psychotherapy.
Scott and I recently got married. I don’t know how we’re still together because your partner gets the brunt of PMDD issues, but he knew I was doing everything I could to be well. There was no part of me that wasn’t desperately trying to stay in this world for him and my daughter. It breaks my heart how much my family had to watch me suffer.
I don't think I'm fully recovered, but I haven’t felt suicidal once since surgery, and I’m learning how to unlearn all my anxiety. I’m so grateful for the people I've got around me, and I'm so proud of myself.”
If you are in need of support, you can call the Samaritans day or night, 365 days a year for free on 116 123, email them at email@example.com, or visit www.samaritans.org to find your nearest branch.
Mind's helpline is 0300 123 3393, their email address is firstname.lastname@example.org and their website is www.mind.org.uk.
If you think you may be suffering from mental health problems, you are also advised to speak to your GP.