How I almost lost the battle to PMDD - and how I ended up surviving.

TW: self-harm

Note: I will be referring to sufferers of PMDD as "women" throughout, but please know I also refer to those AFAB.

 PMDD is only a concept I discovered a few months ago, unfortunately I had no choice but to, as I was severely suffering with it. I have wanted to write about this for a very long time, possibly due to the recency of it and a need to process it, but also how it shows to anyone else suffering from it that there is a way out.

"I'm just a bit premenstrual" - I think every woman would have said that at least once in their life, and is what I had said for years since I started my period when I was 13. Getting irritated at everyone around you, becoming super sensitive, or just crying over seemingly nothing. Unfortunately, PMS has for decades had negative connotations surrounding it - mainly in the case of men using it to dismiss female rationality or just to invalidate any negative human emotion, but that's a pretty surface level feminist observation.

Imagine the heightened of emotions of PMS, now multiply them by 100, and try live with it for at least a week every month. 

PMDD is a severe form of PMS, so technically it is an endocrine disorder, but this does not mean the symptoms are purely physical. PMDD can cause severe mental symptoms, like depression, anxiety, irritability, rage, even suicidal ideation. It disproportionately affects neurodivergent women, which as someone with diagnosed OCD, I fall into this category. Overall, 1.6% of women have PMDD, so it's relatively rare, but of course I was lucky enough to develop it!

Of course, like almost every female-exclusive health problem, it is painfully under researched, so if you've got it, you've got to be prepared to do a lot of work. Many women who have gone to doctors with PMDD have been dismissed with "it's just PMS", it is not, and hopefully by the end of this page you will see why.

I want to precede talking about my experience by saying that I was never formally diagnosed with PMDD - don't roll your eyes just yet, hear me out. I did not have the time to get a formal diagnosis, I was honestly desperate to sort it out as soon as possible. My symptoms and experiences, and eventually my recovery, mirror almost perfectly the average PMDD experience, so I don't want this to take away from the validity of this post. All doctors and mental health officials I saw accepted I had it, and recommended treatments, so I pretty much didn't need to get the diagnosis to get help, so I never bothered. Anyway, end of disclaimer.

Here is my story.

All of this basically happened from March this year to June, so a very sped-up journey. Usually it takes women years, or even decades, to realise they have PMDD and receive treatment, so I am incredibly grateful I was able to nip it in the bud early (thanks health anxiety for prompting me to google symptoms - you were right this time).

I can't really remember the first time I felt truly affected by PMDD, it came on very gradually, beginning with one specific luteal phase where I felt a little worse than usual. My mental health is pretty rocky as a baseline, so it's hard to determine whether this was the start or if it just happened to be a bad week. I put it down to my general anxiety and a bit of PMS, and got on with my days, not really being affected too much.

From March, I begun to notice my luteal phases getting worse and worse, which is hard to say when it all happened so quickly, but April's phase brought with it a ton of anxiety and feelings of overwhelm. I felt at this point I was becoming a little out of control over myself during this phase, but I continued to put it down to PMS.

It was May's cycle where I had plummeted mentally. This is when I first searched up "why do I feel so depressed before my period?" while I was in the middle of having a hysterical crying fit over something I can't even remember. This is when I found out about PMDD. Within days I was the most active user on the r/PMDD subreddit (I know - it actually did me so good so don't hate). Something to know about me is that if I suspect something is wrong with me I am gonna try and fix it straight away, unfortunately, it wasn't so easy. From 111 calls to spending £50 on herbal PMS gummies, nothing was helping. One of the lowest moments was when I got an appointment with a doctor who said I wasn't meant to be referred there and he couldn't do anything, which is when I proceeded to burst into tears, all while being met with a blank, almost contemptuous stare. I left with no help, no future plan, and sobbed by myself on a busy street.

When I got into these phases, it was like a dark cloud had decided to form over me, and no matter what I did, no matter who was around me, I felt nothing. I could laugh, pretend to be okay, but it was never real. The sinking feeling that I now only get when I'm anxious was there constantly, and I felt as if I was going to burst into tears any moment. I had no motivation to cook, I spent copious amounts on UberEats in an attempt to make myself feel better (worked for like a minute), isolated myself from my flatmates, and didn't do any uni work despite exams coming up in a few weeks, oh and I was crying all the time. I sometimes didn't even bother doing my makeup as I knew I would cry it off at some point.

It affected the people around me, and I hated myself for this. I would start sobbing in my flat's kitchen, to my boyfriend, and they could do nothing to help, and in that moment, neither could I. I felt like such a burden, yet I had no control over it, like I was a puppet being controlled by my PMDD. I feared it would ruin my relationships, I had visions of me losing my boyfriend because I was so unpredictable in my emotions.

I used to say this a lot about my OCD (which I will write about very soon), that I was a slave to my own mind. I never thought I'd ever experience that non-consensual control over my mind again, but I was back in that helpless, child-like state.

Eventually I moved past the luteal phase with the help of an extremely heavy, painful period, and this physical pain was such a relief from the sheer misery I had experienced that week. Within a few days, the light had returned to my life. I walked around, appreciating every leaf on the trees, the birdsong, the people I had around me, my little routines, saying to everyone "I'm back in business! I can socialise again!", and I did. Obviously, I wasn't perfect, I still had my anxiety and general ups and downs in emotions, but god was I relieved that I could feel again.

Unfortunately, I had this nagging feeling in my mind that this wouldn't last. It didn't. I fell into a deep depression yet again within 2 weeks. This time it was even worse.

This is the horror of PMDD, all happiness is temporary, of course this is true in life, but to feel like your life is finally back, only to anticipate returning back to the lowest you've ever been capable of feeling. I did in fact return to this, and it wasn't pretty.

It came on unexpected, much earlier than I anticipated, on my expected day of ovulation. I always thought ovulation was a time of sexiness and happiness and confidence, but it shook me to my core this time. I went from the day before being with my friends, playing games with them, and then going round my boyfriend's to stay the night, to waking up with a sense of dread. I thought maybe I had a nightmare, but then the tears started, I cried about 6 times to him, apologising profusely every time. I felt the lowest I had ever in my life. I begun to feel a bit better with some distraction (the Sunderland game), and decided I was gonna have a good day from now on.

You know when you're depressed and people say "Just do some self-care. Have a bath."? This is proof that that advice is .. bollocks. I was determined to look after myself that night, have a nice shower, order some food, and chill in bed. But I was just masking how awful I felt, I still had that dread, and suddenly I became hysterical. I was exhausted of feeling like this, of being ripped away from my happiness for days on end every single month, I felt nothing and wanted to feel something.

I had never been one to take part in or even understand self harming before this, I always questioned why people did it, what help could it do? I had no experience in dealing with depression, I'd always been more of a high maintenance mental heath issue person (anxiety and OCD), I had no coping mechanisms, and I only knew one thing.

Next thing I knew I was faced with campus security bandaging me up in my flatmate's room while I was crying profusely repeating "What have I done? Why did I do that? I'm so stupid? What have I done?". Self-harm is notoriously bad, obviously, but in that moment I was hijacked by my own mind. I was so frustrated and tired of feeling like this, I was desperate for something to make me feel again. Immediately after I felt even worse, now instead of just feeling depressed, I was feeling depressed, I had put myself in danger, and now had to face the consequences of my actions.

The first feeling I had was shame. I couldn't believe I did this to myself. I was ashamed I let myself become hijacked, to put my flatmates in such a difficult position, to be so weak. Looking back, I was just an 18 year old girl who had been obliterated by a debilitating mental health illness with no immediate cure, a girl who had completely lost herself.

Arriving at A&E one of the nurses who spoke to me told me she also suffered with PMDD, and in that moment I felt like I wasn't alone, in such a hellish night, the knowledge of being valid in my suffering was enough to get me through the 9 hour wait. A few stitches later, and a meeting with a crisis team, who were great, I was able to go back and return to normality.

The next day I had the worst emotional hangover ever. I had so much guilt for making my flatmates look after me and sacrifice their wellbeing for me; I feared that I would be labelled as insane, unstable, dangerous; I thought I would lose the people I loved. The consequences of my impulsive action made me make a promise to myself I would never do that again, it took me weeks to forgive myself for it, and I found myself compensating to the people around me for what I put them through. If I could experience this again, I would have treated myself with compassion and understanding, but unfortunately I had a very negative lense on myself.

This part was extremely hard for me to write, I still feel a small sense of shame around the situation, but I realise my scars and my suffering is just proof of my unrelenting strength. I suffer with a need to be perfect to be loved, and this obviously threw me off a ton. I'm still unlearning this belief system, and with the help of my friends and boyfriend, they made me realise that I am so much more than my suffering and PMDD and it could never change the person I am. 

The other people around me were truly incredible. My flatmates who stayed with me in A&E overnight, my parents who let me stay with them for a week to help me recover, and my friends in general who have always been there for me. I will be eternally grateful for all of you, you helped me survive this short-lived yet awful period in my life.

My university was also incredible - the support they offered me following the incident was overwhelming (in a good way), and they allowed me to take my exams later in the summer. This allowed me to focus solely on healing myself.

After this experience I knew it was now or never to recover. I had done some research on birth control to treat PMDD, and I heard about Yaz/Eloine being FDA approved to treat it, a lot of women said it helped, others not so much, some even said it made it worse, but at this point I had no choice but to take a leap of faith.

Within a few days I started the pill, and ever since I have regained my life back. My relationships are thriving more than ever, both with others and with myself, I no longer feel depressed, my hormones are stable and I have control over myself again. Of course not every day is perfect, but that's just the human experience. I still have a lot of work to do on myself, but now I have the space to do so. To live again, not just survive.

I had no negative side effects, I gained a little weight but honestly most of it went to my boobs, which could have always done with a little extra, so I'm not complaining.

Obviously I was very lucky to have the first medication I try work, I feel as if that was the universe giving me a break, and this won't be the case for everyone. But, you will get your relief just like I did, even if you have to try over and over again. Do not give up. 

To anyone who suffers with PMDD, or even bad PMS, do not feel defeated. Even being aware of it is the first step - you are in control. I thank a lot of people in this post, but I need to thank myself mainly. I am the one who did the copious amounts of research, who took initiative over my mental health, who accepted responsibility for my effect on others, who saved me. I am the reason I have a will to live again. 

Thank you for reading.

Here are some links about information about PMDD if you or anyone you know suffers. You are not alone.

https://www.mind.org.uk/information-support/types-of-mental-health-problems/premenstrual-dysphoric-disorder-pmdd/what-is-pmdd/ 

https://www.rcog.org.uk/for-the-public/browse-our-patient-information/managing-premenstrual-syndrome-pms/