90% of PMDD cases go undiagnosed yet it affects 1 in 20 women and causes symptoms ranging from painful cramps to dizziness and even suicidal thoughts. Here’s how to recognise it and two sufferers’ experiences of PMDD

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We’ve all heard of PMS  - mainly because the majority of women have suffered from it in some way, shape or form and also because it’s still to this day presented to us by some sectors of society as evidence of our “weakness” or as the focus of snidey sexist comments. PMS may form part of mainstream consciousness, even if it’s derided, but far less is known about the rarer and more extreme PMDD (premenstrual dysphoric disorder), an endocrine disorder and recently listed mental health problem that affects one in 20 women and can have extreme emotional and physical side-effects. April marks PMDD awareness month, but given that I work in the women’s health space and had never heard of it, why are so many of us in the dark about PMDD?

Nurse, specialist sexual health expert and presenter of E4’s The Sex Clinic Sarah Mulindwa  is a PMDD sufferer herself and explains that the condition is so little-known because it gets absorbed into the long list of ‘grin and bear it’ experiences that women are expected to face:

“I think that there is a lack of awareness around the topic of PMDD due to the fact that it’s triggered by ovulation, which is as normal a bodily function as breathing for women of childbearing age. PMDD thus becomes almost accepted as being part and parcel of being a women and because it’s not a constant way of being, how much it can affect overall health and wellbeing is significantly underestimated.”

Thankfully more and more women are receiving diagnosis’ and treatment, with “frank conversations, the connective power of social media and a greater awareness of women’s health issues overall” playing a large part in PMDD being identified and taken seriously. If you suspect you might have it or know someone who does, here’s Sarah’s guide to spotting the signs, seeking treatment and coping strategies.

What is PMDD?

It’s a very severe form of PMS. It occurs because during a cycle serotonin levels fluctuate and trigger mood changes. Symptoms usually present one to two weeks before your period and usually go away a few days before you start your cycle.

Signs and symptoms of PMDD

These are typical symptoms but bear in mind that you may experience only a few on this list:

  • Anxiety
  • Depression
  • Feelings of hopelessness and a lack of interest in your favourite things
  • Insomnia, or sleeping for longer than is normal for you
  • Fatigue
  • Severe irritability
  • Loss of energy and a lack of motivation
  • Difficulty focussing or concentrating
  • Severe physical manifestations of PMS symptoms such as tender beasts, cramping, bloating and/or weight gain
  • Dizziness
  • Panic attacks
  • Suicidal thoughts

How to tell if you have PMDD

If you think that you might be experiencing PMDD I advise keeping a symptom diary tracking any monthly changes, both in a physical and emotional sense. Document two to three consecutive months, paying particular attention to the week before your period starts. Be mindful of pattern and changes in your mood especially.

I originally put my PMDD symptoms down to regular PMS and it’s not until I spoke to a medical friend of mine that I realised that my experience was more severe than most, so I’d recommend visiting your doctor if you recognise even a few signs. Hormones can be managed and there are solutions out there - sometimes just being diagnosed alone is half the battle. There’s still not a great deal of research available about PMDD, therefore it’s easily confused with depression or anxiety as the symptoms can seem the same but fluctuate throughout the month in a cyclical nature, unlike clinical depression which is generally classified as a persistent feeling of sadness and loss of interest in daily life. If you have pre-existing mental health problems it’s even more vital that you seek medical help if you notice PMDD symptoms.

PMDD can lead to suicidal thoughts in some cases, so if you or anyone you know is having monthly thoughts about suicide you can contact the mental health charity Mind  by way of the yellow ‘I need urgent help’ button at the top of the site’s web pages - you’ll then be guided through options to keep yourself safe. You can also call the Samaritans for free on 116 123 to talk and in an emergency call 999 or go straight to A&E.

What causes PMDD?

As I’ve highlighted (and in line with many other issues affecting women’s health ) there’s a lack of research around the disorder currently but Mind cites possible links to “an increased sensitivity to normal hormonal changes that occur during your monthly menstrual cycle.” Studies suggest that this hormonal hypersensitivity could be genetic while others have associated PMDD with past trauma, but concrete evidence is thin on the ground as yet.

Sarah’s PMDD coping strategies

1. First off, if you think that you might be experiencing PMDD, or if you feel that your PMS is hard to handle month after month, then book an appointment with your practice nurse or GP. PMDD can be effectively treated with medicines that can suppress ovulation and the production of ovarian hormones so it’s very important to seek expert advice from a clinician and discuss your options fully.

1. Which brings us to the importance of talking and communicating your experience to others. These kind of symptoms aren’t something we tend to talk about and as a result conditions such as this become weirdly normalised - I think that we wrongly assume that all women go through the same things. PMDD can be extremely disruptive to both the sufferer’s life and that of those around them if left untreated or swept under the carpet.

3. Exercise. Physical activity can work wonders for your mental health  and is a great stress reliever. Regular exercise is known to have a profoundly positive impact on conditions such as depression and anxiety while also improving memory and helping you to sleep better. If exercise is new to you, start with long walks and make them a habit.

4. Don’t be afraid to take time out. Trying to balance the stresses of modern day life with PMDD can cause serious long-term physical and mental health issues so if you’re suffering give yourself a day off when you can and need to, even if it means staying in your PJ’s all day. Booking a massage or a manicure or whatever mood lifter works for you at times in the month that you know you’re likely to feel the effects of PMDD can give you something to look forward to and go some way to improving your overall wellbeing.

5. Try not to use alcohol as a coping mechanism. It can make PMDD symptoms feel twice as bad so try to cut back on alcohol when you feel mood changes coming on - combining a hangover with PMDD is a recipe for low mood. Ditto diet - eat in a healthy, balanced way and try to cut back on stimulants such as caffeine and sugar that can have a detrimental effect on mood and energy levels.

“Getting my period wasn’t just a small monthly inconvenience like everyone talked about - it began to ruin my life.”

Emma, 27, has suffered from PMDD since the age of 13. Here she share’s the impact that it’s had on everything from making friends to getting an education, the contraceptive that made a real difference to her quality of life and the advice she’d give to other women and girls experiencing PMDD.

“Ever since starting my periods I’ve always had symptoms of PMDD. My mood would change dramatically every single month like clockwork and I'd go through stages of anger, irritability, overwhelming sadness and depression every month. I knew it was coming, then my period would start and the fog of depression would slowly lift so that eventually I’d feel like myself again.

“I dreaded the run-up to my period every month - it wasn't just a small inconvenience like everyone talked about; it ruined my social life, my family relationships, my education...everything. I just thought that I was an overly sensitive person.

“Every month my I’d have to take three or four days off school because I felt so low. I just couldn't get out of bed, to the point that the authorities became involved to see why I was off sick so much. I just shrugged and told them that I’d been ill and that was left alone. I'd lie in bed and cry about the littlest thing, I felt ultra sensitive emotionally; if someone said something remotely critical of me, I felt completely worthless and like I may as well not exist. I'd watch TV, films, cartoons...anything to distract me from the swimming thoughts of sadness in my head. I don't know if it actually helped but it temporarily relieved my suicidal thoughts. Otherwise I'd have to simply wait the week out.

I spent the best part of my teenage years thinking that it was a common experience to feel suicidal once a month

“I don't think that my mum knew the extent of what I was feeling. She knew that I had the blues every month and that I was missing school, and since she experienced similar symptoms she was sympathetic, but we just thought it was normal. I spent the best part of my teenage years thinking that it was a common experience to feel suicidal once a month - as if that was “just PMS” and every woman felt that way.

“I first went to the doctor about it when I turned 16. I described how my mood changed every month, that my periods were heavy and painful and that I was taking time off school. The GP prescribed me the combined contraceptive pill  and sent me on my way - there were no follow-up questions and I was too shy to talk about feeling so depressed every month, so I didn't.

“The combined pill did help to relieve period pain but did nothing to help my mood in the week before my period came, a time during which my personality completely changed. Eventually I went from feeling depressed for one week a month to feeling incredibly low all month long. I went back to the doctors after a few years of trying to cope and she prescribed me antidepressants . I was also put on a waiting list for  talking therapy  but I wasn't willing to wait six months to feel better - I needed urgent help.

My advice to other women and girls would be to go to your doctor and tell them the absolute truth

“I soon came off the pill after researching the link between depression and PMDD - I changed to the Mirena coil  a few years ago and it's completely transformed my life. I feel that I’m finally on an even keel - I feel normal and as a bonus my periods have completely stopped. I still feel a small ‘hormonal surge’ just before my period is 'supposed' to come in, but nowhere near to the degree that I did before. To put it into perspective, I might feel a little tearful, rather than contemplating suicide as had been the situation in the past. I've also been on antidepressants since I was 18.. The truth is that I'm scared to change my contraception and my medication because I know how low that I can get, especially in the week before my period, but one day I will consider it. Probably when I'm in a stable financial position and more ‘settled’.

“My advice to other women and girls in my position would be to go to your doctor and tell them the absolute truth. Tell them the extent of what you're feeling and if you feel suicidal. You’re not being overly dramatic and it's not something to feel embarrassed about. You don't even have to tell the medical receptionist what the appointment is for if you don’t want to.

“PMDD and it’s symptoms aren’t “normal”. Talk to your friends and family and see how they cope with their periods. My mum suggested the Mirena coil to me as she had gotten on really well with it and I desperately wish that I had known more about it ten years ago! It makes sense that what would work for her might work for me too given her very similar experience. Do your research and just know that it's okay to feel a bit rubbish before your period, but to think you're better off dead? That's a serious illness and you need to ask for help. You don't have to suffer and there is always something that can be done!”

Find more information, support and resources for PMDD sufferers on the  Mind website

How women with heavy periods are finally being taken seriously