Periods suck. There’s pain, blood, fatigue, and emotions – just an overall bad time! Oh well, it’s the same for everyone. Nothing to do but get on with it, right? Wrong!
Periods are the burden of all women of childbearing age. Most experience some level of discomfort during their period. For 45%, this manifests as Premenstrual Syndrome (PMS), with symptoms like mood swings, stomach cramps and fatigue. But for 12%, there is something even worse – Premenstrual Dysphoric Disorder (PMDD).
There is depressingly little practical information about this medical condition, with many professionals still in denial about its existence. In this article, I will share some lessons I’ve learned in my journey to a PMDD diagnosis.
PMS OR PMDD?
So, what actually is PMDD? In basic terms, PMDD is an extreme form of PMS. Physical and mental symptoms – cramps, mood swings, breast tenderness etc. – are similar, but in PMDD they are experienced to a far greater degree. While both occur in the luteal phase of the menstrual cycle (the weeks between ovulation and the start of the period) PMS typically occurs for a few days towards the end of the phase – PMDD lasts for the whole thing!
There has been no universal conclusion as to why PMDD occurs. My doctor gave me the same broad ‘reason’ that ‘explains’ PMS – some people are more sensitive to changes in hormone levels, which causes both mental and physical ‘discomfort’ (not in any way an accurate description of what PMDD sufferers go through every month, by the way) in the weeks leading up to their period.
Considering this, it should be no surprise that one of the biggest struggles when it comes to getting a PMDD diagnosis is figuring out whether you are experiencing PMS or PMDD. Part of the problem is that PMDD is still such an unknown unless you are actively looking for an explanation for your insane pre-period symptoms. PMS appears in science lessons, popular culture and those cringey ‘guide to puberty’ books with the mentally scarring illustrations. It’s an accepted part of the menstrual cycle, which makes it hard to identify when something more serious is going on…but not impossible.
Tip #1 – acknowledge the problem
I was pretty sure that my periods were worse than average from the age of 14 (I mean, none of my friends spent theirs vomiting and fighting to stay conscious). But I accepted it – ‘this is what my periods are like, I just need to deal’.
This attitude was fine when I was in high school – and got me a couple of days off most months. Things changed when I got to Sixth Form. My high school experience wasn’t terrible, but it wasn’t great. So I brushed off the mental dips I experienced every few weeks as a natural response to being unhappy, not thinking anything of it. But then I was studying subjects I actually cared about, had made some great new friends, felt more confident in myself than ever – and those dips still kept happening. I had no medical history of mental health issues, so I couldn’t understand it.
I’d always been quite lazy about tracking my period symptoms. It was therefore surprising when I sat down to analyse my changes in mental state and it seemed to be worse in the weeks leading up to my period. With this revelation, I finally decided it was time to sort my (period) life out!
If you think your cycle is in any way unusual PLEASE go and see someone. It could be nothing or you may be right, but acknowledging the problem is the only way it will ever get sorted.
Tip #2 – see a specialist
The first time I tried to get some answers about my awful periods was a disaster. Looking back, this was, in part, because I saw a nurse, rather than a gynaecological specialist.
I mean no disrespect to nurses here – you are a criminally undervalued part of our medical system. However, when it comes to specialist issues, you should really see a specialist, rather than the nurse down the GP!
In that first meeting, the nurse asked a couple of basic questions about my PMS symptoms (no mention of PMDD whatsoever). She then asked whether I wanted to go on the pill. My limited understanding of the pill from friends’ experiences was that it ‘sorted’ your period, so I leapt at that option immediately. The nurse explained I couldn’t have the combined pill because there was a history of breast cancer in my family. This left me with two progesterone ones I could try before we started talking about an implant or coil. The prospect of those last two options terrified me, but I ignored this, sure the pill would work.
It did not.
After bleeding for a month straight I decided enough was enough and stopped taking my prescribed pill. I had no confidence the other one could be much different and had no interest in pursuing the other options. I was back to square one. Fantastic.
Nurses and doctors are great, but they are not necessarily the best people to talk to if you have a specific gynaecological problem. Make sure you see a specialist – either a gynaecologist or a doctor who specialises in gynaecological issues.
Tip #3 – do your research
Information on PMDD is really hard to find unless you are looking for it. I first came across it by accident while searching for something completely unrelated.
It was listed alongside a number of other mental health disorders on a website I was browsing. I didn’t recognise it so I clicked…and everything changed (not to be too dramatic). As I read through the page (link below) it was like everything fell into place. Suddenly there was a name for this awfulness I’d been experiencing for the past eight years. There were lists of symptoms, treatments, advice and other people going through the same thing. I may have cried a little.
Armed with this magical term – PMDD – I set about finding everything I could. There were a fair number of medical sites with basic definitions and explanations, and a lot of emotional blog posts about various PMDD journeys. But only that first web page had any kind of practical information about what to do when you suspect you have it.
This frustrated me (hence this article), but I couldn’t stay mad for long. I felt like a weight had been lifted. I was going back to the doctor – and this time I would be fixed.
Understanding your suspected condition is important. Not all medical professionals will know about PMDD or believe it exists. If you do your research¸ you put yourself in a position to guide their diagnosis, rather than have it dictated to you.
Tip #4 – stay confident, keep pushing
My first consultation was not good. It happened over the phone, with a GP who specialised in ‘female medicine’. She told me I needed a referral from her before I spoke with the resident gynaecologist.
I described my symptoms – vomiting, fainting, episodes of paranoia and rage, amongst others. She dismissed them all as PMT. Do any of you know what that means? Because I didn’t. I asked for clarification and she began criticising me for not knowing. PMT stands for Premenstrual Tension (apparently another term for PMS). The doctor declared this to be normal and nothing to worry about. She then suggested I should have bothered with some research before I started making appointments.
I nearly hung up the phone and demanded to speak with a different doctor. However, she eventually conceded that my physical symptoms sounded quite bad and referred me to the resident gynaecologist.
I thought the gynaecologist would be the same. The phone call certainly put me off bringing up PMDD explicitly in my consultation, Yet she was very supportive of the fact that my experience was definitely a severe form of PMS (sound familiar?).
No matter how dismissive ‘professionals’ are about your symptoms, too often the case when you have a mood disorder, keep pushing. You know yourself better than they ever will – remember your research and stay confident.
Tip #5 – do what’s right for you
First step: regulate the period. The gynaecologist put me on the pill – the combined pill, by the way (see ‘Things I Wish I’d Known’).
The five months on the pill between the first and second consultation were some of the worst of my life. Before my periods had been quite irregular, so I usually had a few months to recover from the awfulness. Now, three weeks a month were taken up my period – one for the thing itself and two for the extreme mental dip caused by PMDD. I felt completely out of control of my daily life. On some days, I couldn’t talk to other people without my entire body shaking.
But I made it! At the second consultation, I barely dented my list of symptoms before the gynaecologist said those sweet, sweet words, “I think you have PMDD.”
With the diagnosis official, we could FINALLY start talking about PMDD treatment. She first recommended that I start taking Selective Serotonin Reuptake Inhibitors (SSRIs), a type of anti-depressant.
This did not make sense to me. My mental health problems were being caused by the hormones related to my period, true. But when those weren’t firing all over the place I was absolutely fine. It felt wrong to put myself on anti-depressants when I didn’t actually need them all the time. The gynaecologist really wanted me to try them, saying I could just use them during the luteal phase of my cycle. I stuck to my guns and said ‘no’.
The treatment I opted for was an altered prescription of the pill. I was told to take the pill for three months straight, only taking a week off at the end of that period (no pun intended). As of writing this article I have been off the pill for two days. Those have been rough, but the three months of no horrendous mental dips and excruciating pain have been blissful. I still have a little way to go in my PMDD journey, but I feel like I can finally see the end of the tunnel – and it feels great!
It is important with any medical problem, particularly when mental health is involved, to do what’s right for you. I knew SSRIs were not something I wanted, so I was firm about saying no. Ask your doctor to explain all the treatment options – including pros and cons – and do your own research so you can make an informed choice about whether to follow their recommendations.
Things I wish I’d known
Before I wrap this up, I just wanted to highlight a few things that would have made some of this PMDD journey a lot easier if I’d known them sooner:
- Birth control pills: are not a cure-all for period problems, and actually, only one has been confirmed by the US Food and Drug Administration (FDA) to improve symptoms of PMDD (see links below).
- The combined (oestrogen-based) pill: should not be taken if there is a history of breast cancer in your family, unless cancer occurred in relatives over the age of fifty in which case it is absolutely fine.
- Tracking symptoms: needs to be done all the time, not just when your period starts (do not be a lazy butt like me and take years to sort this out).
- PMDD tracking: use a specific PMDD tracker to record your symptoms, as this makes it easier for your doctor to analyse and ensure you don’t leave out anything important (see links below).
- PMT: as PMDD becomes more acknowledged, medical professionals are now substituting the term PMS with PMT to better separate this from PMDD (as PMDD is technically a sub-category of PMS).
- PDD: some people refer to PMDD as PDD, so don’t let that confuse you!
Final thoughts
PMDD is a frustrating, debilitating and, in some cases, life-destroying mood disorder. I hope this article has shed some light on the practical side of getting a PMDD diagnosis and has been reassuring rather than depressing! Just remember – you are not alone.
Below are some helpful links to the pages that I used both to write this article, and in the research that led to my original self-diagnosis:
Mind, PMDD information page: includes symptoms, treatments, a guide to getting a diagnosis, information for friends and family and more (if there is only one link you look at make it this one!)
The International Association for Premenstrual Disorders (IAPD), treatment guidelines: outlines scientific justifications for treatment recommendations and compares treatments
Clue, birth control treatment information page – discusses the use of the pill in treating PMDD, including a useful table comparing the effectiveness of different pills
IAPD, trackers page: printable and digital trackers specifically designed for PMDD
Find more self-improvement articles here >
Written by Kirsten Rowland
Illustrated by Francesca Mariama
