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Blog: Raising awareness of premenstrual dysphoric disorder (PMDD)

27 Apr 2023

Jenny struggled with symptoms of Premenstrual Dysphoric Disorder (PMDD) for years before finally getting a diagnosis. To mark PMD Awareness Month, Jenny writes about her experience and why it is so important to raise awareness of the impact of PMDD.

I struggled with depression for years before being diagnosed with Premenstrual Dysphoric Disorder. During this time I tried different treatments including various antidepressants, the contraceptive pill, therapy, and exercise, but my depression wasn’t getting any better. At its worst, I got to the point where I didn’t want to be here anymore. I told my GP this for several years and she has tried her best to help me.

I had noticed my mood seemed to be related to my menstrual cycle but because my periods were regular, I was told it couldn’t be to do with my hormones. Having been diagnosed with M.E/Chronic Fatigue Syndrome, I was also seeing a specialist nurse regularly at the time. She picked up on my mood and its correlation to my monthly cycle and discussed the possibility of something called PMDD. The information she gave me described me perfectly, but this was the first I’d heard of PMDD.

By the time I was finally referred to a gynaecologist in October 2019, I was feeling suicidal for three weeks of every month. This continued as a vicious cycle that got worse the longer it went on. PMDD robbed my children of their mum, my parents of their daughter, my husband of his wife and myself of my life.

Between October 2019 and August 2020, I had several appointments with my gynaecologist, where I was given an ultrasound scan and a trial of Prostap injections to help my symptoms. I had to stop the Prostap injections due to it affecting my blood pressure, and I was then placed on the waiting list for a hysterectomy.

Prostap can bring on temporary menopause symptoms, which is called chemical menopause. During the short time I was in chemical menopause I had some relief of my symptoms, and I noticed a big improvement in my mental health. A hysterectomy would be the most drastic treatment, but I felt it would be the best solution for me.

While on the waiting list for a hysterectomy, I also got diagnosed with binge eating disorder, which is another symptom of PMDD. My PMDD was left so long untreated that this symptom turned into another illness that I struggled with.

I was pressured to lose weight in order to have the surgery, which just made my eating disorder worse. After two years, I was told that I had be taken off the waiting list for a hysterectomy because of my high BMI.

After being removed from the waiting list, I reached an all-time low and felt that I had nowhere to go. I was told I couldn’t re-join the waiting list for surgery until my BMI was lower. I felt at a loss, and I ended up paying privately to see a specialist rather than face long NHS waits. The specialist I saw saved my life. I felt listened to, and was spoken to in an honest and open way. He suggested I try Zoladex injections, which work in a similar way to Prostap by putting me in chemical menopause. Zoladex has changed my life.

PMDD is known to be associated with low mood and suicidal thoughts, but from my experience there needs to be more awareness and training for healthcare professionals to recognise and know how to treat PMDD, as well as supporting those who are struggling with their mental health.

I have used Zoladex injections to manage my symptoms successfully for a while, but unfortunately they have stopped working and I am struggling with my PMDD again. The private gynaecologist I saw has helped refer me back to the NHS to discuss treatment options, including a hysterectomy rather than paying for this privately. I’ve now got an appointment in April.

My experiences and treatment I’ve had over the past three years has affected my physical and mental health. PMDD can have a dramatic impact on our bodies, but sadly awareness of the condition and this impact is not widely recognised, and poorly understood. This lack of awareness leads to delays in being correctly diagnosed.

From education in schools to training for healthcare professionals, there are many opportunities to raise awareness of PMDD and increase understanding of how the symptoms can have a severe impact on someone’s life. I hope that by sharing my story, I can help others spot signs of PMDD, and raise awareness of how hormones can affect mental health.

About PMDD

Premenstrual dysphoric disorder (PMDD) is sometimes referred to as a very severe form of premenstrual syndrome (PMS). It is a cyclical, hormone-based disorder that can cause symptoms during the premenstrual, or luteal phase of the menstrual cycle.

There are over 150 symptoms linked to premenstrual syndrome (PMS) and PMDD, which cover psychological and behavioural symptoms such as anxiety and depression, as well as physical symptoms, including headaches and breast tenderness.

It is estimated that as many as 30% of women and people with periods experience moderate to severe PMS, while 5-8% in the UK have PMDD.

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