Living with PMDD
April is PMDD Awareness Month, a global effort to bring attention to Premenstrual Dysphoric Disorder (PMDD). Kathleen McKinn, Regional and Event Coordinator at RANZCOG, writes about her experience of living with this underdiagnosed and widely overlooked condition.
I’m Kathleen, one of the Event Coordinators here at RANZCOG, and as part of PMDD Awareness Month, I am here to tell you about my journey of diagnosis and living with Premenstrual Dysphoric Disorder (PMDD).
When I was in my early twenties I had a particularly horrendous experience with a gynaecologist, who basically told me that, as I didn’t have endometriosis or PMDD, there was “nothing wrong with me”. This dismissal of my physical and psychological symptoms meant that until 2020, I suffered in silence, and it pretty much was silence. I’d been told that there was nothing wrong with me, so I hid my distress and the emotional toll every month was taking on me, physically and emotionally.
As a result of the treatment I’d received from that interaction, I minimised my symptoms to my GP, family members and friends. “Just go for a walk, you’ll be fine”: the problem was, some days, I couldn’t get out of bed to even have a shower or cook food, my mental health was so bad, so going for a walk wasn’t something that would fix my problems.
I recognise that I am immensely privileged to work at RANZCOG and have access to resources that a lot of people with PMDD don’t have. However, it wasn’t until I started to work at the College that I even knew that PMDD existed.
I managed to get an appointment with an understanding, kind and lovely gynaecologist who looked at the symptoms I’d tracked, listened to me, and got me treatment. I am so lucky that for me, a combination of easily available medications help minimise my symptoms, as well as working through the process of diagnosis and living with PMDD with a psychologist, I can now function most of the time, and I know how to plan both my work and my life outside of work so that I can be kind to myself. Being listened to and validated was particularly powerful and having the fact that I’d lived with these symptoms for close to 15 years recognised was a very cathartic process to go through.
I don’t see myself as a patient advocate; however I am using my role at the College to bang my drum to make people more aware of PMDD. It’s not just bad PMS, it’s a severe and crippling disorder that turns me into a different person for half the month, every month. To have a diagnosis and be believed and listened to was life changing: I would urge people who work in the women’s health space to make their patients more aware of this if they think this could be something that their patient may be suffering from.
The International Association for Premenstrual Disorders (IAMPD) has amazing resources on PMDD, and has a self-screening tool as well. The other place I have found is a great online community across social media platforms who have an understanding of what people who live with PMDD go through, which creates a sense of camaraderie. PMDD can be an incredibly isolating disorder.
As I get off my soapbox for PMDD Awareness Month, I would urge people who work in the women’s health space to listen to their patients and their experiences.