PMDD, pre¬≠mens¬≠trual dys¬≠pho¬≠ric dis¬≠or¬≠der, is a mens¬≠trual dis¬≠or¬≠der in which hor¬≠mo¬≠nally indu¬≠ced mood swings can take on an extreme form. In this inter¬≠view, Laura tells us about living with PMDD, what‚Äôs actually behind the term, and gives us insights into her ever¬≠y¬≠day life. Laura Teare-Jones is thirty years old, lives with her hus¬≠band and their two dogs in North Wales. She was dia¬≠gno¬≠sed with pre¬≠mens¬≠trual dys¬≠pho¬≠ric dis¬≠or¬≠der (PMDD) in 2019. Thank you dear Laura for spea¬≠king so openly about PMDD and for play¬≠ing an important part in rai¬≠sing awa¬≠reness. In her pod¬≠cast ‚ÄúMy Hor¬≠mo¬≠nes, My Health‚ÄĚ she talks about PMDD and shares per¬≠so¬≠nal experiences.

Can you please explain what PMDD is? 

Pre-Mens¬≠trual Dys¬≠pho¬≠ric Dis¬≠or¬≠der is a mens¬≠trual con¬≠di¬≠tion that affects 1 in 20 cycling indi¬≠vi¬≠du¬≠als (anyone who has peri¬≠ods). Medi¬≠cally spea¬≠king, PMDD is an extreme sen¬≠si¬≠ti¬≠vity to hor¬≠mo¬≠nal chan¬≠ges wit¬≠hin the body. So it isn‚Äôt PMS, and it isn‚Äôt a hor¬≠mo¬≠nal imba¬≠lance. Pre-mens¬≠trual ‚Äď mea¬≠ning before period, dys¬≠pho¬≠ric ‚Äď easily sum¬≠med up as the oppo¬≠site of eupho¬≠ric, and mea¬≠ning state of dif¬≠fi¬≠culty, and dis¬≠or¬≠der. When I Goo¬≠g¬≠led the actual defi¬≠ni¬≠tion of dis¬≠or¬≠der, it came up with ‚Äúa con¬≠fu¬≠sed or messy state‚ÄĚ which I actually think is per¬≠fect! So PMDD ‚Äď before a period, a dif¬≠fi¬≠cult, con¬≠fu¬≠sed and messy state! Sym¬≠ptoms tend to begin at around ovu¬≠la¬≠tion and end at the start of a period (so las¬≠ting 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 con¬≠nec¬≠ted how I was fee¬≠ling and my sym¬≠ptoms with my mens¬≠trual cycle. What I saw it as was, pha¬≠ses of depres¬≠sion. But just as I would start thin¬≠king that maybe it was time to speak to my Doc¬≠tor, the depres¬≠sion would lift ‚Äď as would hap¬≠pen with PMDD. But me not knowing about it at the time I would con¬≠si¬≠der mys¬≠elf cured. Then when it would hit again, I would blame mys¬≠elf for not doing enough to pro¬≠tect my men¬≠tal health. Over the years I have been back and for¬≠ward to the doc¬≠tor and trea¬≠ted for my mood and for migrai¬≠nes, but no con¬≠nec¬≠tions were ever made ‚Äď by them or by me ‚Äď with my mens¬≠trual cycle.

What is your experience with doctors? 

When you find a good Doc¬≠tor for PMDD, they‚Äôre like gold-dust! Unfor¬≠tu¬≠n¬≠a¬≠tely, though, PMDD is so unhe¬≠ard of in the medi¬≠cal world. Often when I built up the cou¬≠rage to see a Doc¬≠tor, I do feel like I was not taken seriously. I remem¬≠ber being a teen¬≠ager and struggling with dis¬≠or¬≠de¬≠red eating. Binge eating and chan¬≠ges in appe¬≠tite are a sym¬≠ptom of PMDD so this is likely to all be lin¬≠ked. I told my GP about my unhe¬≠althy eating habits and told them I thought I nee¬≠ded help. This was a big deal ‚Äď I was about 15, fee¬≠ling really vul¬≠nerable, alone in the Doctor‚Äôs sur¬≠gery. And when I asked for help for what was beco¬≠m¬≠ing an eating dis¬≠or¬≠der, I was told I nee¬≠ded to eat healt¬≠hier and given a list of healthy foods.

This really set a tone for me ‚Äď that if I wan¬≠ted to get bet¬≠ter, I didn‚Äôt need help, I just nee¬≠ded to get on with it. When I was dia¬≠gno¬≠sed with PMDD, it was again based on me ‚Äútaking charge‚ÄĚ of what was hap¬≠pe¬≠ning. I did the rese¬≠arch and tra¬≠cked my sym¬≠ptoms and pre¬≠sen¬≠ted my fin¬≠dings to my GP.  They agreed I pro¬≠bably had PMDD and should go back on the con¬≠tracep¬≠tive pill. It was such a relief to get a dia¬≠gno¬≠sis and feel like I was taken seriously. Howe¬≠ver, at the same time, I wasn‚Äôt really taken seriously because I‚Äôd recently come off the pill because it wasn‚Äôt agre¬≠eing with me. I felt seen and heard, but I didn‚Äôt feel understood.

Which symptoms do you have? 

Living with PMDD really affects a person‚Äôs mood. For me they include anxiety, depres¬≠sion, ten¬≠sion, fee¬≠lings of des¬≠pair and hopel¬≠ess¬≠ness, and sui¬≠ci¬≠dal ide¬≠a¬≠tion. I also expe¬≠ri¬≠ence phy¬≠si¬≠cal sym¬≠ptoms (which can be less pre¬≠va¬≠lent and less tal¬≠ked about). And the worst for me is migraine. I also get fati¬≠gue and bloa¬≠ting, sick¬≠ness and brain fog ‚Äď which really affects my memory and speech.

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

I‚Äôve tried dif¬≠fe¬≠rent con¬≠tracep¬≠tive pills over the years. While they weren‚Äôt spe¬≠ci¬≠fi¬≠cally for PMDD, loo¬≠king back, they all exa¬≠cer¬≠ba¬≠ted my sym¬≠ptoms. When I was dia¬≠gno¬≠sed, I was offe¬≠red SSRIs (anti¬≠de¬≠pres¬≠sants), which I took every day. Howe¬≠ver, I found that while they did dial down my sym¬≠ptoms, they also dial¬≠led down the hap¬≠pi¬≠ness I felt on my bet¬≠ter days, which felt really unfair! When I‚Äôm not in PMDD, I‚Äôm such a happy and posi¬≠tive per¬≠son. Living with PMDD takes that away from me. And while I can accept that as a medi¬≠cal con¬≠di¬≠tion, I don‚Äôt want my bet¬≠ter days to be taken away from me too. 

After doing some rese¬≠arch I found that SSRIs can be more effec¬≠tive for PMDD when taken in luteal phase only rather than all cycle long ‚Äď so from ovu¬≠la¬≠tion to day one of a period star¬≠ting. So after spea¬≠king with my GP, I tried doing that. And I found that it really did make a dif¬≠fe¬≠rence ‚Äď the SSRIs still took the edge off my har¬≠der days without zap¬≠ping my energy on the bet¬≠ter days, so this has been a big help for me.

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

Yes! I‚Äôm really big on self-com¬≠pas¬≠sion, but I tell anyone that as soon as you start put¬≠ting pres¬≠sure on yourself to be self-com¬≠pas¬≠sio¬≠nate, it beco¬≠mes the oppo¬≠site! So, my big¬≠gest habit actually is pati¬≠ence ‚Äď mee¬≠ting mys¬≠elf where I am on any given day and just going with how I feel. 

In terms of diet and exer¬≠cise, I try to eat healt¬≠hily but again don‚Äôt put pres¬≠sure on mys¬≠elf 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 pres¬≠sure. So, I won‚Äôt beat mys¬≠elf up for eating less healthy food any more, as that tends to make me spi¬≠ral even more. And I love wal¬≠king ‚Äď on my har¬≠der days, on my bet¬≠ter days, wha¬≠te¬≠ver! Wal¬≠king is exer¬≠cise, it‚Äôs fresh air, and it‚Äôs a change of sce¬≠nery when things are get¬≠ting 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‚Äôm going to feel. PMDD sym¬≠ptoms tend to start from ovu¬≠la¬≠tion and end at day one of a period. But they can con¬≠ti¬≠nue into a few days of the period, and for me they aren‚Äôt always that bad when I‚Äôm at ovu¬≠la¬≠tion. So, it means I second guess mys¬≠elf a lot ‚Äď am I genui¬≠nely upset about some¬≠thing that needs addres¬≠sing, or is it PMDD? There are days when I can‚Äôt get out of bed, I can‚Äôt func¬≠tion. If I do get out of bed, I might be stuck on the sofa ‚Äď I call it my hiber¬≠na¬≠tion time. And it is okay to rest. 

But how does this fit in with being a thirty-year-old woman try¬≠ing to do what other people my age are doing ‚Äď like have a full-time job? I learnt a few years ago that the Mon¬≠day to Fri¬≠day 9 to 5 just wasn‚Äôt sus¬≠tainable 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‚Äôt doable, and I‚Äôve had to really think about what a suc¬≠cess¬≠ful career looks like for me. 

How has your life changed since the diagnosis? 

It‚Äôs chan¬≠ged my life for the bet¬≠ter. I‚Äôve learnt to be pati¬≠ent with mys¬≠elf now that I know I have a chro¬≠nic con¬≠di¬≠tion. I‚Äôve met some ama¬≠zing people that I know I can speak to so openly and honestly ‚Äď the online PMDD com¬≠mu¬≠nity is ama¬≠zing! But there‚Äôs also a cloud han¬≠ging over my head, where my future is so uncer¬≠tain. Every cycle I go through is a cycle clo¬≠ser to me con¬≠si¬≠de¬≠ring sur¬≠gery, which actually I don‚Äôt want to have. I‚Äôm going to have to really think about that.

What made you start your Instagram account and podcast? 

At the start of the pan¬≠de¬≠mic, I deci¬≠ded to create an Insta¬≠gram account to raise PMDD awa¬≠reness, edu¬≠cate, and spread a mes¬≠sage of hope ‚Äď that a life with health or hor¬≠mone issues could still be com¬≠pa¬≠ti¬≠ble with a life of joy. I ori¬≠gi¬≠nally kept it anony¬≠mous because I wasn‚Äôt ready to share my story with the world. But then I rea¬≠li¬≠sed that actually, if more awa¬≠reness and edu¬≠ca¬≠tion is nee¬≠ded, then that pro¬≠bably starts with nor¬≠ma¬≠li¬≠sing the con¬≠ver¬≠sa¬≠ti¬≠ons around peri¬≠ods, mens¬≠trual health, hor¬≠mo¬≠nes and men¬≠tal health, without hiding behind my Insta¬≠gram account. And self-shame only per¬≠pe¬≠tua¬≠tes stigma. At that point I knew I was ready to share my story. I was strong enough to allow mys¬≠elf to be openly vul¬≠nerable, if it hel¬≠ped other people. This is when I star¬≠ted the My Hor¬≠mo¬≠nes My Health podcast. 

‚ÄúMy Hormones My Health‚ÄĚ ‚Äď A podcast about living with PMDD

My inten¬≠tion was for this to be a plat¬≠form for me to docu¬≠ment my expe¬≠ri¬≠en¬≠ces and spea¬≠king to guests about theirs. It‚Äôs part of my cru¬≠sade to spread awa¬≠reness, but it very quickly snow¬≠bal¬≠led into some¬≠thing else. I was inun¬≠da¬≠ted with people asking to talk on the pod¬≠cast. I rea¬≠li¬≠sed that people actually really want to talk about this! They have a voice and they really want to use it! The pod¬≠cast works  because my guests are able to talk about things they might never have tal¬≠ked about so openly before. My lis¬≠teners also get to learn that they aren‚Äôt alone. I‚Äôve been a well¬≠ness coach for six years, and I‚Äôve recently star¬≠ted spe¬≠cia¬≠li¬≠sing in PMDD. Because I believe, that if we‚Äôre 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?

Lis¬≠ten and have pati¬≠ence! There is no cure for PMDD, it WILL come back next month. I know that can be hard to under¬≠stand. And what you define as sup¬≠port, and what the per¬≠son living with PMDD defi¬≠nes as sup¬≠port, might actually be two dif¬≠fe¬≠rent things. So take the time to com¬≠mu¬≠ni¬≠cate with them ‚Äď 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
Co-Foun­der Vulvani | | 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.