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PMDD Awareness Month 2018

Blog 27 April 2018

April marks Premenstrual Dysphoric Disorder (PMDD) Awareness Month, a campaign to raise awareness and advocate change for those affected by PMDD, a very severe form of premenstrual syndrome. Laura Murphy, a member of the RCOG’s Women’s Voices Involvement Panel, speaks out about her struggle of living with PMDD.

“My issues started at 17 when I began to take the contraceptive pill to manage my heavy periods. On day 21, I collapsed on to the floor and had my first ever panic attack. It felt like the world was ending. I then went into a deep depression and struggled to get out of bed in the mornings. As a result, I was asked to drop out of school. By my mid-20s, my symptoms of premenstrual syndrome were so severe that I was sleeping for 18 hours a day, experiencing explosive rages, and having thoughts of suicide. My ex-partner would say that it was ‘like living with a different person for a week each month’.

“At 32 years old, I was pushed into having the Mirena Coil. For a couple of years, I was OK and then I crashed. I was severely depressed for 18 months and, for the first time, I developed crippling anxiety. My GP told me that the coil wasn’t responsible, as the hormones only act locally, and I was prescribed Pregabalin to treat my anxiety. I had suicidal ideation for many months and developed alopecia areata, where by big chunks of hair fell out. I was unable to work full time as I had intermittent periods of depression and pain attacks. I was on and off antidepressants and in and out of counselling.

“After another disappointing GP appointment, where I was told, yet again, that this was 'just PMS and something all women have to deal with', I went home and searched ‘severe PMS’ on Google. PMDD just popped up and it was a life changing moment. Reading through the information, I thought 'this is me!' The reaction to birth control, the suicidal thoughts, the hypersomnia, the exhaustion – it all finally made sense.

“After almost walking out in front of a lorry, I saw my GP who referred me to an excellent clinician at a PMS and menopause clinic who I had heard about from the UK PMDD Support Group on Facebook. Sitting down in front of him three months later was the first time I had met with a healthcare professional who understood what I was saying. I was 34 and had spent 17 years undiagnosed. PMDD had taken over more than just a week each month, and my symptoms had continued to get worse.

“Sadly, the treatments didn’t work for me and actually made me feel worse - which is not unusual - so in October 2017 I underwent a full hysterectomy with bilateral oophorectomy which was the last option in treating PMDD. It was a big decision but I do not think I would have made it to menopause the way I was going. I now have to restart my life at the age of 39.

“My story is not uncommon. Online forums and support groups are full of PMDD sufferers passing around treatment plans, experience of medication and stories of healthcare appointments where the doctor had never heard of PMDD. Suffers shouldn’t have to have their crippling symptoms belittled and fight to be taken seriously.

“We must work with healthcare professionals to raise awareness of PMDD and educate more women. Doctors should encourage women to track their cycles by keeping a diary, and recommend that PMDD patients join an online support group. It is important to understand that there is no one-size fits all treatment, and the significant impact this condition has on suffers, their families and their lives.”

NOTES

Nick Panay, spokesperson for the Royal College of Obstetricians and Gynaecologists (RCOG) and Chair of the National Association for Premenstrual Syndrome (NAPS), said: 

“Premenstrual dysphoric disorder (PMDD) is one of the most severe types of premenstrual syndrome (PMS), and affects 5-10% of women. The symptoms of PMDD are similar to those of PMS, but are more exaggerated and often have more psychological symptoms than physical ones. These can include feelings of hopelessness, persistent sadness or depression, extreme anger and anxiety, decreased interest in usual activities, sleeping much more or less than usual, very low self-esteem, and extreme tension and irritability.

“PMDD and severe PMS can have a profoundly negative effect on a woman’s daily life. Symptoms can seriously affect relationships and stop women from functioning properly in their daily lives. If women are experiencing PMS symptoms that are making everyday life difficult, they should see their GP who may refer them to a PMS specialist. Women should not suffer in silence.”

For more information on PMDD:

RCOG Green-top guideline on Premenstrual Syndrome, Management

The National Association for Premenstrual Syndrome – Guidelines on Premenstrual Syndrome

Gia Allemand Foundation

Vicious Cycle PMDD

Mind: Premenstrual dysphoric disorder

National Association for Premenstrual Syndrome guideline on Premenstrual Syndrome

About the RCOG’s Women’s Voices Involvement Panel

The RCOG Women’s Voices Involvement Panel is an online group of over 400 members of the public who want to use their experience of women’s health services to influence the work of the College and the wider women’s health sector.