Living with PMDD

 

Having PMS that makes you feel suicidal or makes you want to run away every month is not ‘just PMS’

Premenstrual dysphoric disorder (PMDD) is a severe and disabling form of premenstrual syndrome affecting 3–8% of menstruating women (that’s A LOT of women!).

Severe psychological symptoms can include mood swings, depression, tiredness, fatigue or lethargy, anxiety, feeling out of control, irritability, aggression, anger, sleep disorder, and food cravings that recur monthly during the luteal phase of the menstrual cycle. Some women also suffer from chronic physical conditions. Research released in January 2017 shows that PMDD is caused by a genetic malfunction. This causes a sensitivity to the fluctuation of sex hormones. It is NOT a hormonal imbalance.

 

I thought I was weak for feeling suicidal every month

 

It’s PMS on steroids…

For a long time, I thought it was ‘normal’ to suffer from severe PMS. I thought I was weak for feeling suicidal every month. I would just go to bed for a few days as I could only face sleeping. I’d been to the GP time and time again over the years to get help with panic disorder and depression. Not once did anyone ever suggest that hormones could be the problem. I also had bad reactions to different contraceptive pills over the years.

I remember in my 20’s when I was living with a partner. He told me that it was ‘like living with a different person for one week a month’. I would get chronically depressed and I wouldn’t be able to get out of bed for a few days each month. In the build-up to that, I would have panic attacks and big rages. There was a big knock-on effect. It made it difficult to hold down a job, so I always worked part-time or took on temp work.

In my 30’s this got worse and I had the Mirena coil fitted to help my cycle. This, it turns out, is a big no-no for women with PMDD. Many of us have a bad reaction to Progesterone. In my case, I ended up signed off work for 18 months with crippling anxiety and depression.

I did some research and realised it may be down to the coil. Doctor’s, however, told me this was not possible. They advised that the coil only acts locally and no hormones travel into your system. In my case, this turned out to be total rubbish. The day after I had it removed was the first day in years that I woke up without that buzzing anxiety feeling in my arms.

 

The ‘lightbulb’ moment

It was only when I got home from another GP appointment I thought to myself ‘this can’t be right’. I acted and Googled ‘Severe PMS’ – up popped information about PMDD. When I identified with the symptoms it was a life-changing moment. I joined a support group on Facebook (UK PMDD Support) and I finally started to piece together everything that had happened over the past 18 years.

 

Speaking to other sufferers

Joining the support group was invaluable to me. There were SO many women out there who had been through (and are still going through) the same as me. It was a revelation. I learnt about treatment plans and specialists from these supportive women. They also gave reassurance that I wasn’t ‘broken’ or ‘useless’.

The crunch point came when I got so low that I almost walked out in front of a lorry when I was with my boyfriend

 

Although I had finally found support, unfortunately, my health kept getting worse. I was losing about three days on the descent into PMDD. It knocked me out for a week and then I needed a good few days to recover. The crunch point came when I got so low that I almost walked out in front of a lorry when I was with my boyfriend.

I can only liken it to feeling like I was going through a bereavement every month. It was exhausting. That incident scared me enough to go to my Doctor and tell them (not ask!) that I needed a referral to a specialist. My Doctor approved and I now see the amazing Dr Panay in London. I’m going through chemical menopause whilst on HRT. Fingers crossed that it all goes well and I will be having a full hysterectomy in the future. It’s important to point out that the operation is only the case in the most chronic cases. It’s for women who do not respond to the other treatments in the treatment plan.

 

Helping others…

I now run the UK PMDD Support group and we have over 900 members. It still shocks me that no medical professional picked up on my reactions to hormones/my cycle earlier on. I still have only met one GP who has even heard of PMDD.

Alongside the support group, I wanted to raise awareness of PMDD. I worked with my lovely friend, Celia Hyland (also a sufferer) to create the “Vicious Cycle: Making PMDD Visible” project. We’re asking sufferers, along with their partners, friends and family to put their thoughts, words and art onto postcards and send them in. It will accumulate into an exhibition which will highlight the effect of PMDD on women’s lives. The exhibition is at the core of the project. There will also be lots of awareness projects running alongside it.

If you have any concerns please do read up on PMDD, talk to your GP and look after yourself.

This blog was written for TOTM by Laura Murphy, PMDD Awareness Promoter. Follow Laura on Twitter to keep up with her story. To find out more about Vicious Cycle: Making PMDD visible project, check out the Twitter page. Further reading about PMS and PMDD can be found either via the National Association for Premenstrual Syndrome website or via Gia Allemand Foundation. Be sure to check out our Q&A with Laura. 

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*Disclaimer: This blog is based on my personal experience. My comments are based on what I’ve personally gone through and what I have been told. I’m sharing this personal story with the aim to help others in the same situation and to raise awareness. I have no medical experience or qualifications and I don’t pretend to be giving medical advice. If you are concerned about any of your period symptoms you should contact your GP for advice.

For more information on PMDD and other menstrual and reproductive health conditions, visit our health and wellness section.