I found PMDD just in time
by Suzy Darke
It took me 26 years to discover PMDD and make the connection between my mental health and my hormones.
The first time I noticed a pattern was one Sunday afternoon three years ago – my husband and I had just had a blazing row over a roast chicken.
I can remember sitting on the stairs sobbing and terrified about how bad I was feeling. I was full of rage, convinced that my marriage was over, and fantasising about running away or just ending it all. As I sat there with my mind whirling, I could hear my husband and young children downstairs. I felt completely estranged from them – like I was trapped in a bubble of despair while everyone else was getting on with life.
Then I got my period.
Almost instantaneously I felt like I had woken up from a bad dream. I could think clearly again. I realised that how I’d just been feeling wasn’t real. I couldn’t understand what had just happened to me.
A monthly pattern
I noticed the same pattern the following month and knew it wasn’t just a coincidence.
I would battle irrational thoughts, paranoia, anxiety and depression in the two weeks leading up to my period. In the couple of days before I came on it would reach a horrific crescendo of rage, desperation and a need to get out of my life. Then I’d feel a sudden ‘waking up’ from it all, the instant I started bleeding.
I started googling ‘PMT and depression’, ‘PMT and anxiety’, ‘PMT and rage’, and I kept seeing the term ‘PMDD’ in the search results. It was the first time I’d ever heard of PMDD.
PMDD stands for Premenstrual Dysphoric Disorder. Many sufferers describe it as PMT on steroids. It’s caused by a severe reaction to the rise and fall of the hormones oestrogen and progesterone that happen during our monthly cycle.
PMDD can get worse with age and around significant hormonal events like pregnancy and menopause.
The long road to diagnosis
I think I’ve suffered with PMDD since at least my mid teens. Starting the pill aged 16 made it a whole lot worse, sending me plummeting into bulimia and clinical depression.
I’ve had what I’d describe as wobbly mental health ever since.
Successive GPs prescribed Prozac on and off during my teens and 20s for intermittent depression and anxiety. But nobody ever suggested my hormones as the possible cause.
Things went up a notch in my mid-30s when I had my two beautiful children. While my mental health was great during pregnancy, I suffered Post Natal Depression with each birth, which was utterly terrifying.
I was prescribed more antidepressants – Sertraline this time. But after a while, my symptoms just wouldn’t be dulled by the pills. And then I made the connection.
Finding PMDD support
I am so thankful that I found out about PMDD in time. I shudder to think what could have happened to my family and to me if I had just kept fighting on my own.
Once I had a name for what I was experiencing, I found wonderful support groups like UK PMDD Support and IAPMD (International Association For Premenstrual Disorders).
I started tracking my symptoms with a cycle app on my phone. This is such an important thing to do as it helps you understand how your cycle affects you, while building up the evidence you need to fight for treatment. And it did feel like a fight at first.
Fighting for treatment
Once I knew what was happening to me, I thought getting treatment would be straightforward. But none of my GPs had heard of the condition and they couldn’t see how desperate and terrified I was. I was ‘highly functioning’ – holding down a job and a family – so I suppose it looked as though I was coping.
Whenever it got really bad, they would up my dosage of antidepressants and prescribe Diazepam and beta blockers to take the edge off my anxiety.
I struggled along like this for about six months. The last straw came when I’d finally got through to my GP on the phone, one Friday afternoon, and explained that I was feeling desperate and couldn’t stop thinking about ending it all. She told me to remember my children and booked me an appointment with the practice nurse for the following Monday.
Once I had made it through that month’s torture, I felt so let down that I switched medical practice. I’m so glad I changed GP. I was blessed with an open-minded doctor who took the time to investigate PMDD. He agreed to help me follow the NAPS Guidelines on Premenstrual Syndrome and we started the process of working through the suggested treatment programme.
It was a tough time. I tried a couple of different contraceptive pills that can alleviate PMDD, but they only aggravated my symptoms.
After a few months of trial and error, my GP referred me to a private specialist. Seeking private help was my only option in Cornwall – there is no longer any funding for specialist women’s health on the NHS where I live.
And so I went to see Dr Sarah Gray in Truro. I took all my cycle tracking data and was ready to fight to be heard all over again. But I didn’t need to. She understood. She explained what was happening to me and why. And she promised to help me.
Dr Gray took me through a course of cycle-suppression injections that temporarily shut down my ovaries and mimicked menopause, to test the potential for a hysterectomy to help with my symptoms. I had add-back Oestrogen HRT to counter any menopausal symptoms and felt better than I had in years.
This process showed I had two options: oopherectomy (removal of both ovaries) with progesterone to protect my womb from the risk of cervical cancer; or a total hysterectomy (ovaries, tubes, cervix, womb) with no need for added progesterone.
Progesterone and I are not friends. I now know that I can’t tolerate even a tiny dose of it. And so the only treatment left for me was a total hysterectomy.
The decision was an easy one for me to make. But I know I was in the really fortunate position of having already made my family. I know that, for many women, hysterectomy would feel like a much more difficult step to take.
It’s been almost a year since my operation and I don’t regret it one bit. I have my life back, my brain back, my soul back.
I have to take oestrogen and testosterone HRT to keep me healthy. I can’t say I’m totally ‘fixed’. Sometimes the balance feels very off and we have to tweak my HRT. But even on my wobbliest day I’m nowhere near as desperate as I was before the operation.
Treating my PMDD has given me energy and brain space and creativity that I haven’t had for a long time. I started my blog, Under the Green Fig Tree and I started my own business training women to be copywriters. I’ve gone from surviving to living. It feels like a real metamorphosis. I found PMDD just in time.
Suzy is a writer and mum of two. She trains mums to be copywriters so they can find work that fits around their families and writes about working motherhood on her blog Under the Green Fig Tree. You can find her on Instagram @underthegreenfigtree