PERIOD PIONEER: Q&A with PMDD awareness campaigner
Get to know our inspirational TOTM Period Powerful Pioneer, PMDD awareness campaigner, Laura Murphy. Here, Laura tells us all about living with PMDD, and why she’s actively trying to raise awareness of this condition.
Having PMS that makes you feel suicidal or makes you want to run away every month is not ‘just PMS’. PMDD is a severe and disabling form of Premenstrual Syndrome affecting 3–8% of menstruators. After being diagnosed with PMDD, Laura has fought to raise awareness of this debilitating condition via the Vicious Cycle Project. In addition to this project, Laura oversees the PMDD support group and sits on the board for the Gia Allemand Foundation!
Have you heard of Laura before?
If you’re one of the PMDD peeps, chances are you’ve heard of Laura before. Likewise, if you’re an avid TOTM blog reader then you might have come across Laura’s story when we shared it in 2017. Her honest, very real story had a big impact when we shared it. Since then we saw the fantastic work that Laura has been doing as a PMDD awareness campaigner, whilst battling her own condition. That’s why we’re thrilled she is one of our Period Powerful Pioneers!
If you’ve not heard of Laura before or want to get to know her a little bit more, we caught up with her here:
First things first, what are the symptoms of PMDD?
“Severe psychological symptoms can include mood swings, depression, suicidal ideation, anxiety, brain fog, feeling out of control, irritability, aggression, anger, sleep issues, and food cravings (to name just a few!). These recur monthly during the luteal phase of the menstrual cycle. For some people, this is a few days and for others, this is up to a few weeks a month. Think of PMS x 1000. Some women also suffer from physical symptoms such as fatigue or lethargy, bloating, joint pain, sore breasts etc.
It is commonly misdiagnosed as rapid-cycling Bipolar.
PMDD usually worsens with age. It seems as if it can be triggered by any hormonal interruption such as puberty, birth control, ablations, IVF, pregnancy, miscarriage, perimenopause etc.”
Could you please tell us about your battle with PMDD?
“My issues started at 17 years old. But I was not diagnosed until I was 35, which sucks.
At 17 I took the pill for heavy periods and on the 21st day of taking it I just crumbled. I started having panic attacks and went into a deep depression. For the next few years that was a cycle for me – depression, panic attacks, awful PMS where I would lash out and sob and feel worthless.
For a long time, I thought it was normal to suffer from just bad PMS. I thought I was weak for feeling suicidal every month. I would just go to bed for a few days as I would be exhausted and could only face sleeping, sleeping and more sleeping. I’d been to the GP time and time again over the years to get help with panic disorder and depression (which I suffered with in conjunction to my PMDD). Not once did anyone ever suggest that hormones could be the problem.
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 and end up storming out of the house at all hours. There was a big knock-on effect on my life. Being out of action for 5/6 days each month made it difficult to hold down a job, so I always worked part-time or took on temp work. I thought it was just me and that I was ‘broken’.”
How did you realise this is ‘NOT JUST PMS’?
“In my 30’s things got worse and I had the Mirena coil fitted to help my cycle. This, it turns out, was a big mistake and I had a bad reaction to progesterone. I ended up signed off work for 18 months with crippling anxiety and depression. I developed alopecia and had big bald patches on my head. After doing some research realised it may be down to the coil. Doctors, however, told me this was not possible. They advised that the coil only acts locally, and no hormones travel into your system. Big mistake. HUGE.
It was during this time that I was seeing an amazing counsellor (called Michelle. She was wonderful). She was the first person that ever said to me, ‘I see you every week and I can tell you that this is NOT PMS’. I went home and Googled ‘Severe PMS’ and up popped information about PMDD. This was a life-changing moment and what we call in the PMDD world, the ‘lightbulb moment’.”
Where did you find additional support?
“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. Scrolling down through the group posts for the first time was a revelation for me; There were SO many women out there who had been through (and were still going through) the same as me. Through the group, I learnt about treatment plans and specialists from other sufferers. They also gave reassurance that I wasn’t ‘broken’ or ‘useless’. I cannot thank those who shared their knowledge with me enough – I am so passionate that the information gets passed down the chain. That support group is now run by me!”
So, you knew it was PMDD at this stage, but how did you manage the condition?
“Although I had finally found support, unfortunately, my health kept getting worse. I was losing about 10 days a month now to PMDD. I can only liken it to feeling like I was going through a bereavement every month. It was exhausting and heart-breaking as you just knew it would be back next month…and the next…and the next.
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. 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 a few months later I was sat in front of the amazing Dr Panay in London. They put me on Hormone Therapy for a year. This didn’t work – it just sped my cycle up! I was then put into chemical menopause. Again, this didn’t work – it just meant I had 3 good days a month instead.
In October 2017, at age 38, I had a total hysterectomy with bilateral oophorectomy. This is not something I saw happening to myself at such a young age and I now have to navigate Surgical Menopause.
It’s important to point out that the operation is only the case in the most chronic cases. It’s for those who do not respond to the other treatments in the treatment plan so don’t panic.”
What’s your awareness project, Vicious Cycle: Making PMDD Visible all about?
“We are a patient-led awareness project. PMDD is very little known about, despite it affecting so many people and having such devastating effects on both the sufferers, their partners and their family.
Our main aim is to raise awareness of PMDD so that more people have their ‘lightbulb moment’ and can get the help they need and not suffer alone. We also aim to raise the standards of care so we want to work with Gynaecological bodies and commissioning groups to ensure training for HCP around this.
PMDD is not included in GP training.
It is not included in Gynaecologists training.
It is not included in Psychiatrists training.
Sufferers are spending years being told it is ‘just PMS’. They are being misdiagnosed as having Bipolar Disorder. This needs to change. We do not offer support directly to sufferers but are always happy to chat and signpost others to help and information. Many sufferers will tell you that they have learnt more from other sufferers than they have from Doctors, sadly.”
What motivated to start up Vicious Cycle?
“In short – we saw something that needed doing so we decided to do it.
I always wondered why somebody didn’t do something about that, then I realised I am that somebody! I knew from my experience that there was a real lack of awareness of PMDD. After all, it took me 17 years of suffering to even hear of it. This was both in the public and Health Care Professionals.
It became very clear by talking on a daily basis to those joining the UK PMDD support group that this was having a MASSIVE effect on so many people. I would cry at the stories I heard from women who had been alone for years. The women who had been turned away or mocked by their GP. Those who were terrified of telling anyone how they felt each month in case someone took away their children. It was heart-breaking. I had lost so much of my life to this and I didn’t want others to go through the same.
While it sucks to suffer, we are the lucky ones as we know what we are dealing with. We can find help, we can find support, we can find the treatment plans and push for the right treatment.”
Could you please tell us about the PMDD postcards?
“#pmddpostcards is a small art project set up by myself and a friend, Celia Hyland, (also a sufferer). The idea came to us of doing an exhibition to showcase how it feels to suffer from PMDD. We invited sufferers from all over the world to send in creative works (be it poetry, art, photography). We received some great entries and I soon got stuck in and realised I wanted to take things much further – This is what started Vicious Cycle!
Over the next few months, the team grew organically (there is now a core team of 8). Other like-minded women came my way and we all just ‘clicked’ into place. We all volunteer our time from around the world.”
We know you do SO much to make a difference, what other projects/campaigns are you involved with?
“I oversee the UK PMDD Support group on Facebook and I am on the Board of Directors for the Gia Allemand Foundation for PMDD. This is an international, non-profit organisation, providing support and resources to anyone affected by PMDD or PME. My interest in reproductive health and health equality has grown since becoming involved with the project and I am enjoying learning and connecting with other amazing people running some great projects.”
And last, but not least, what’s your top advice for anyone who might be suffering with PMDD?
“Read and learn.
Sadly PMDD, despite affecting so many people, is largely unknown about by Health Care Professionals. So, you need to print off the treatment plans, learn them and be able to self-advocate. Sad but true. It is also a common problem for people to see Doctors who have never heard of PMDD – keep knocking on doors until the right person answers and tries to help you. It can feel devastating at the time – but KNOW YOUR BODY and BELIEVE YOURSELF and push, push and push until you get the right help.
Keep going and keep trying:
Currently, there is no one treatment that works for everyone, so you may have to try a few to find something that offers you relief.
Find your ‘tribe’:
I will never forget the moment I scrolled down through my first support group – there were all these people just like ME! Join some support groups and so you can know you are not alone…you are not crazy. You are not broken. Look around until you find the right one for you.
For more information on PMDD see, Gia Allemand Foundation who also offer free one-to-one peer support anywhere in the world by phone, text, video or email.
If you think you may suffer, it is a good idea to track your symptoms to see any patterns. Me V PMDD is a great one to use!
We asked sufferers to pick one word that describes PMDD. Hell was by far the most ‘popular’ word that got put forward. If you want to talk about this and get involved with Vicious Cycle you can contact us via email, Facebook, Twitter or Instagram”
Stay tuned for more from Laura and our other Period Powerful Pioneers (we have 7 in total!). Get to know our other pioneers! Here’s Jaimee’s story.