PMDD Diaries: Getting A Diagnosis
Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based mood disorder thought to affect as many as 1 in 20 women and AFAB individuals of reproductive age. Symptoms arise in in the luteal phase of the menstrual cycle and subside shortly after the onset of menstruation. Symptoms severely affect mood and are accompanied by uncomfortable physical symptoms which both impair the individual’s quality of life. While directly connected to the menstrual cycle, PMDD is not a hormonal disorder.
I wrote a post here about my experiences living with PMDD back in April 2021 and then (finally) received a formal diagnosis of the condition in September 2021.
My original post seemed to resonate with a lot of people, so I thought it would be valuable to share my experience of getting diagnosed and some advice on how to access the services to get help.
I am fortunate that the first I ever heard about PMDD was from the therapist I was seeing on a one-to-one basis during my time on a DBT programme. An important element to the one-to-one sessions was completing a weekly mood diary, which is where we became aware that a lot of my severe mental health symptoms appeared to be cyclical. I chose to document my menstrual cycle along side this et voilà, an undeniable pattern emerged.
I started tracking my symptoms on a diary card I found online that is used specifically to help diagnose PMDD which further validated my experiences.
At first I felt able to manage my symptoms myself. This wasn’t because I was able to cope well, but because of traumatic past experiences with hormone based contraception which broke my vagina for 9 years (I’ll save that for another post!), and unpleasant experiences taking SSRIs which are both the frontline treatments for PMDD.
However, following a serious episode of self harm requiring hospital treatment, my mental health team and partner supported me in seeking help specific to the condition.
The first steps to diagnosis
As with any suspected medical problem, the first step is to see your GP.
I am very blessed with a lovely GP who I have seen exclusively since 2016. To put it bluntly, she has been through some shit with me over the years and we have a really pleasant therapeutic relationship. I never feel like I’m not going to be taken seriously which I know is a privilege!
We talked about my current issues and that I wasn’t able to cope, backed up by the opinions of my therapist and CPN, and she was very understanding. She already knew I am not able to take the pill, but agreed that I could try taking a low dose of fluoxetine when symptomatic, if given the go ahead from my psychiatrist who prescribes the rest of my medications.
Due to my resistance to trying any form of hormone manipulation, we decided a referral to a gynaecologist might not be worth it for me at that time.
That’s where I left off last April. Shortly after, things got worse.
Unfortunately I noticed an increase in severity of my symptoms and the fluoxetine seemed to be helping less and less. I had been doing my symptom diary for a year at this point and this was showing on my charts.
I tearfully phoned my GP and requested that she put in a referral for gynaecology. I’d really had enough.
Obviously, this being the NHS, there was an uncertain amount of time to wait for an appointment. It was estimated to take a year, but I was very fortunate to be offered one in September, approximately 5 months later.
I had bags of time to prepare for the appointment with the gynaecologist. I had already researched the consultants in my area that are experienced with menstrual disorders and my GP tried her best to get me in with one of them, but in the end we just took what we could get.
I had another 4/5 cycles to document, each as bad as the last. I also made detailed notes about my mental health since puberty (as I firmly believe I was affected by PMDD before developing additional problems), got statements from my mum and partner, and described the mood problems that affect the other female/AFAB people in my family (my sister likely has the condition too).
I also made notes about my worst symptoms (as my symptom charts are difficult to read at a glance), how severely they impair my quality of life, with particular emphasis on depression, anxiety, joint pain, bloating and weight gain, fatigue, self harm and suicidal ideation.
As luck(?) would have it, my appointment was smack bang in the middle of my luteal phase and on that particular day I was, to put it lightly, symptomatic AF.
I did not get to see the consultant and instead saw a female member of his team. She was very kind although it felt clear that she had been seeing patients for physical gynaecological problems all day and wasn’t prepared for someone to come in half in tears and talk about self harm and suicide!
We went through my symptom charts which again, I don’t think she was ready to be presented with 17 months worth of data! To get a diagnosis of PMDD, you need to document ideally more than two cycles worth of symptoms to demonstrate the pattern and have any underlying physical conditions or mental health problems ruled out, eg: bipolar disorder can be exacerbated by hormonal changes. Note: a worsening of other conditions during the luteal phase may instead be called Premenstrual Exacerbation (PME).
While my previous diagnoses of C-PTSD and EUPD were taken into account, due to the overwhelming evidence that my mood problems and specific physical symptoms follow the pattern of my cycle and severely impair my quality of life, she diagnosed me on the spot. This was a huge relief as I was fully prepared to be told it was my other mental health problems and they could offer no treatment.
We discussed my options. Having ruled out trying any contraceptive pills, the next step would be to increase my dose of fluoxetine and either continue taking it cyclically or switch to every day. I chose to increase to 40mg and continue taking it as I had been (from around day 18 of my cycle until the first day of my period) and consider going “full time” if this didn’t help. I also asked if there were any recommended supplements and if vitamin B6 would potentially help as I had read that online but don’t like supplementing without medical guidance. As it happened, a dose of 50mg-100mg of B6 was recommended as a treatment in the guidelines the doctor had pulled up on the computer, so I agreed to add that into my daily meds regime.
We also talked about the more extreme treatments which may be considered in the future. The first would be medically induced menopause using injections plus add back HRT, or a hysterectomy.
Both of these are quite radical, and while I absolutely will not be having children, at the age of 29 I am quite intimidated at the prospect of menopause of any kind. It is something I will be researching more myself as at this point, the appointment was over.
To be continued…
If this post resonated with you and you would like help pursuing a diagnosis, please check out the International Association for Premenstrual Disorders website for more advice and resources, including a self-screen test and symptom tracker.