PMDD, pre­men­strual dys­phoric dis­order, is a men­strual dis­order in which hor­mon­ally induced mood swings can take on an extreme form. In this inter­view, Laura tells us about liv­ing with PMDD, what’s actu­ally behind the term, and gives us insights into her every­day life. Laura Teare-Jones is thirty years old, lives with her hus­band and their two dogs in North Wales. She was dia­gnosed with pre­men­strual dys­phoric dis­order (PMDD) in 2019. Thank you dear Laura for speak­ing so openly about PMDD and for play­ing an import­ant part in rais­ing aware­ness. In her pod­cast “My Hor­mones, My Health” she talks about PMDD and shares per­sonal experiences.

Can you please explain what PMDD is? 

Pre-Men­strual Dys­phoric Dis­order is a men­strual con­di­tion that affects 1 in 20 cyc­ling indi­vidu­als (any­one who has peri­ods). Med­ic­ally speak­ing, PMDD is an extreme sens­it­iv­ity to hor­monal changes within the body. So it isn’t PMS, and it isn’t a hor­monal imbal­ance. Pre-men­strual mean­ing before period, dys­phoric eas­ily summed up as the oppos­ite of euphoric, and mean­ing state of dif­fi­culty, and dis­order. When I Googled the actual defin­i­tion of dis­order, it came up with “a con­fused or messy state” which I actu­ally think is per­fect! So PMDD – before a period, a dif­fi­cult, con­fused and messy state! Symp­toms tend to begin at around ovu­la­tion and end at the start of a period (so last­ing for around two weeks of every month).

Vulvani, Menstruation, Periode, period, PMDD, Prämenstruelle Dysphorie, Premenstrual Dysphoric Disorder, Prämenstruelle dysphorische Störung, PMS, Prämenstruelles Syndrom, weibliche Gesundheit, Women's Health

What has your his­tory been like until your dia­gnosis of PMDD?

Up until a few years ago, I had never con­nec­ted how I was feel­ing and my symp­toms with my men­strual cycle. What I saw it as was, phases of depres­sion. But just as I would start think­ing that maybe it was time to speak to my Doc­tor, the depres­sion would lift – as would hap­pen with PMDD. But me not know­ing about it at the time I would con­sider myself cured. Then when it would hit again, I would blame myself for not doing enough to pro­tect my men­tal health. Over the years I have been back and for­ward to the doc­tor and treated for my mood and for migraines, but no con­nec­tions were ever made – by them or by me – with my men­strual cycle.

What is your exper­i­ence with doctors? 

When you find a good Doc­tor for PMDD, they’re like gold-dust! Unfor­tu­nately, though, PMDD is so unheard of in the med­ical world. Often when I built up the cour­age to see a Doc­tor, I do feel like I was not taken ser­i­ously. I remem­ber being a teen­ager and strug­gling with dis­ordered eat­ing. Binge eat­ing and changes in appet­ite are a symp­tom of PMDD so this is likely to all be linked. I told my GP about my unhealthy eat­ing habits and told them I thought I needed help. This was a big deal I was about 15, feel­ing really vul­ner­able, alone in the Doctor’s sur­gery. And when I asked for help for what was becom­ing an eat­ing dis­order, I was told I needed to eat health­ier and given a list of healthy foods.

This really set a tone for me – that if I wanted to get bet­ter, I didn’t need help, I just needed to get on with it. When I was dia­gnosed with PMDD, it was again based on me “tak­ing charge” of what was hap­pen­ing. I did the research and tracked my symp­toms and presen­ted my find­ings to my GP.  They agreed I prob­ably had PMDD and should go back on the con­tra­cept­ive pill. It was such a relief to get a dia­gnosis and feel like I was taken ser­i­ously. How­ever, at the same time, I wasn’t really taken ser­i­ously because I’d recently come off the pill because it wasn’t agree­ing with me. I felt seen and heard, but I didn’t feel understood.

Which symp­toms do you have? 

Liv­ing with PMDD really affects a person’s mood. For me they include anxi­ety, depres­sion, ten­sion, feel­ings of des­pair and hope­less­ness, and sui­cidal ideation. I also exper­i­ence phys­ical symp­toms (which can be less pre­val­ent and less talked about). And the worst for me is migraine. I also get fatigue and bloat­ing, sick­ness and brain fog which really affects my memory and speech.

Which treat­ment options forms have you already tried? And what has helped with liv­ing with PMDD?

I’ve tried dif­fer­ent con­tra­cept­ive pills over the years. While they weren’t spe­cific­ally for PMDD, look­ing back, they all exacer­bated my symp­toms. When I was dia­gnosed, I was offered SSRIs (anti­de­press­ants), which I took every day. How­ever, I found that while they did dial down my symp­toms, they also dialled down the hap­pi­ness I felt on my bet­ter days, which felt really unfair! When I’m not in PMDD, I’m such a happy and pos­it­ive per­son. Liv­ing with PMDD takes that away from me. And while I can accept that as a med­ical con­di­tion, I don’t want my bet­ter days to be taken away from me too. 

After doing some research I found that SSRIs can be more effect­ive for PMDD when taken in luteal phase only rather than all cycle long – so from ovu­la­tion to day one of a period start­ing. So after speak­ing with my GP, I tried doing that. And I found that it really did make a dif­fer­ence – the SSRIs still took the edge off my harder days without zap­ping my energy on the bet­ter days, so this has been a big help for me.

Liv­ing with PMDD: Are there any every­day habits that help you?

Yes! I’m really big on self-com­pas­sion, but I tell any­one that as soon as you start put­ting pres­sure on your­self to be self-com­pas­sion­ate, it becomes the oppos­ite! So, my biggest habit actu­ally is patience meet­ing myself where I am on any given day and just going with how I feel. 

In terms of diet and exer­cise, I try to eat health­ily but again don’t put pres­sure on myself here. When you live with a mind that wants to tear you to shreds every month, the last thing you need is to add any more pres­sure. So, I won’t beat myself up for eat­ing less healthy food any more, as that tends to make me spiral even more. And I love walk­ing on my harder days, on my bet­ter days, whatever! Walk­ing is exer­cise, it’s fresh air, and it’s a change of scenery when things are get­ting tough.

Vulvani, Menstruation, Periode, period, PMDD, Prämenstruelle Dysphorie, Premenstrual Dysphoric Disorder, Prämenstruelle dysphorische Störung, PMS, Prämenstruelles Syndrom, weibliche, Gesundheit, Women's Health

Photo Cred­its: Laura

How does hav­ing PMDD influ­ence your every­day life? What is liv­ing with PMDD like?

I never know how I’m going to feel. PMDD symp­toms tend to start from ovu­la­tion and end at day one of a period. But they can con­tinue into a few days of the period, and for me they aren’t always that bad when I’m at ovu­la­tion. So, it means I second guess myself a lot am I genu­inely upset about some­thing that needs address­ing, or is it PMDD? There are days when I can’t get out of bed, I can’t func­tion. If I do get out of bed, I might be stuck on the sofa I call it my hiberna­tion time. And it is okay to rest. 

But how does this fit in with being a thirty-year-old woman try­ing to do what other people my age are doing like have a full-time job? I learnt a few years ago that the Monday to Fri­day 9 to 5 just wasn’t sus­tain­able for me. I give 100% at work and like to feel proud of what I do, but to work a full day like that just isn’t doable, and I’ve had to really think about what a suc­cess­ful career looks like for me. 

How has your life changed since the diagnosis? 

It’s changed my life for the bet­ter. I’ve learnt to be patient with myself now that I know I have a chronic con­di­tion. I’ve met some amaz­ing people that I know I can speak to so openly and hon­estly the online PMDD com­munity is amaz­ing! But there’s also a cloud hanging over my head, where my future is so uncer­tain. Every cycle I go through is a cycle closer to me con­sid­er­ing sur­gery, which actu­ally I don’t want to have. I’m going to have to really think about that.

What made you start your Ins­tagram account and podcast? 

At the start of the pan­demic, I decided to cre­ate an Ins­tagram account to raise PMDD aware­ness, edu­cate, and spread a mes­sage of hope that a life with health or hor­mone issues could still be com­pat­ible with a life of joy. I ori­gin­ally kept it anonym­ous because I wasn’t ready to share my story with the world. But then I real­ised that actu­ally, if more aware­ness and edu­ca­tion is needed, then that prob­ably starts with nor­m­al­ising the con­ver­sa­tions around peri­ods, men­strual health, hor­mones and men­tal health, without hid­ing behind my Ins­tagram account. And self-shame only per­petu­ates stigma. At that point I knew I was ready to share my story. I was strong enough to allow myself to be openly vul­ner­able, if it helped other people. This is when I star­ted the My Hor­mones My Health podcast. 

“My Hor­mones My Health” – A pod­cast about liv­ing with PMDD

My inten­tion was for this to be a plat­form for me to doc­u­ment my exper­i­ences and speak­ing to guests about theirs. It’s part of my cru­sade to spread aware­ness, but it very quickly snow­balled into some­thing else. I was inund­ated with people ask­ing to talk on the pod­cast. I real­ised that people actu­ally really want to talk about this! They have a voice and they really want to use it! The pod­cast works  because my guests are able to talk about things they might never have talked about so openly before. My listen­ers also get to learn that they aren’t alone. I’ve been a well­ness coach for six years, and I’ve recently star­ted spe­cial­ising in PMDD. Because I believe, that if we’re going to tackle shame and stigma, it often needs to start from the inside. We need to deal with our own shame and learn to talk.

Do you have any tips for friends or fam­ily of someone liv­ing with PMDD?

Listen and have patience! There is no cure for PMDD, it WILL come back next month. I know that can be hard to under­stand. And what you define as sup­port, and what the per­son liv­ing with PMDD defines as sup­port, might actu­ally be two dif­fer­ent things. So take the time to com­mu­nic­ate with them that will mean more than you know. 

You can also find Laura on Twit­ter.

Vulvani, Period, PMDD, Prämenstruelle Dysphorische Störung, Prämestruelle Dysphorie, PMS, Leben mit PMDD

Photo Cred­its: Laura

living with PMDD, PMS, PMDD, extreme moods, Vulvani
Britta Wiebe, period education, Vulvani
Britta 
Co-Founder Vul­vani | britta@vulvani.com | Web­site | + posts

Britta Wiebe is the co-founder of Vul­vani. She loves research­ing, writ­ing and design­ing new art­icles or innov­at­ive edu­ca­tional con­cepts about men­stru­ation all day long. When she is not trav­el­ling the world, she enjoys spend­ing time with her loved ones in the beau­ti­ful city of Ham­burg in Germany.