PMDD — when your menstrual cycle can make you suicidal
For most women, having premenstrual syndrome (PMS) in the days leading up to their period is a definite inconvenience, but not much more than that. Sore boobs, in a bit of a grump, maybe a tad tearful or snappy. Over the years it is something women just learn to deal with — maybe schedule a night in on a bad day, or go extra hard in the gym in a bid to soften the mood swings. But for some people PMS can be dangerous — and saying it can ruin lives is no hyperbole. Having extreme PMS is commonly known as premenstrual dysphoric disorder (PMDD) and it is estimated to affect 5-10% of women and AFAB people of reproductive age.1
Dr John Studd, consultant gynaecologist at the Chelsea & Westminster Hospital and professor of gynaecology at Imperial College, says PMDD isn’t a good name for the condition, however. “It’s the same thing as PMS. Patients don’t come and say ‘I’m feeling dysphoric’. It’s not a psychiatric condition, it’s a hormonal condition.” According to him, certain women are intolerant to progesterone, so get these extreme symptoms, including depression, loss of libido and headaches, when their progesterone levels rise.
While those with PMDD may argue that describing it as ‘the same thing as PMS’ undermines how crippling their symptoms are, other doctors, too, view the condition as a sliding scale of PMS severity, which can affect people drastically. “We tend to look at it as a spectrum,” says Dr Carolyn Sadler, a GP with a special interest in gynaecology and a trustee of the National Association for Premenstrual Syndrome (NAPS). She adds that there are about 150 symptoms described and the key thing about severe PMS, which differentiates it from the PMS most women experience, is that it has a significant impact on daily living.
But what exactly does “significant impact” translate to? For many women, their experiences of extreme PMS have literally turned their lives upside down.
Laura Murphy, a 38-year-old furniture upcycler, noticed something was wrong aged 17 when she reacted extremely badly to the pill. “When I first went on the pill, I started having panic attacks and suffering from depression,” she says. “I went through bouts of depression and reacting badly to hormones for years. In my 30s it just got worse and worse.” Her symptoms include severe depression, severe anxiety, exhaustion (which leads her to sleep for up to 18 hours a day), palpitations, and a sense that she is in deep bereavement.
“I get a buildup of frustration and rage. I am an introvert, so much of this is aimed at myself and I used to self harm by cutting or burning”
When she approached doctors about what she was feeling, it was a struggle to get anyone to take her seriously. “To build the confidence to go and open up and then get brushed off is soul destroying. I have only ever spoken to one GP that has even heard of PMDD,” Laura says. “I have been laughed at, mocked, and even told that I was lucky I was not living in the middle ages as they’d think I was a witch and I’d be burnt at the stake.” When she finally spoke to a doctor that understood, and had heard of PMDD, she says the feeling was “overwhelming”.
By this point, she had visited her GP a number of times between the ages of 17 and 35 with depression, panic attacks, reactions to the pill, and a bad reaction to the Mirena coil. She was signed off work for 18 months with anxiety, and says her GP didn’t believe it could be caused by her coil. Over this entire period of nearly 20 years, no one ever mentioned that she may have a condition caused by her hormones or be sensitive to them. Eventually, she came home from yet another unsuccessful doctor’s appointment and found herself Googling “severe pms”. It was then that she realised she might have PMDD, and it took a new doctor to make the official diagnosis. “I am still angry that I needed to find out about it myself,” says Laura, “as I could have got so much more help and support for years.”
Laura’s experience is sadly quite common and many other sufferers echo her words. Sarah Austen is a 26-year-old personal shopper for Tesco, and says her symptoms have almost led to her dismissal at work. She started her periods when she was 11, but it was only when she searched for “severe PMS” online that she realised this was what she had. Her symptoms are so bad that she has attempted suicide on two occasions, both in her late teens. “I get a buildup of frustration and rage. I am an introvert, so much of this is aimed at myself and I used to self harm by cutting or burning,” she says.
On top of that, Sarah finds that she suffers from pain in her vagina, as if someone is physically pulling it apart. She becomes emotional, has crying spurts, and gets exhausted after anything she does, including walking the dog or eating, so spends hours in bed as a result. Her dreams are vivid and cause her to wake with headaches, and she gets other physical symptoms including back pain, gas retention, breast tenderness, and constipation. Because all the symptoms would happen at once, she thought she was going insane. In the end, Sarah turned to self diagnosis via the internet after her issues weren’t solved by a visit to her GP.
“If someone is really distressed, even if their symptoms don’t sound as severe as other people’s, it’s important to treat people as an individual”
Indeed, it isn’t an easy thing for a GP to diagnose. Symptoms change between different people, overlap with many other illnesses, and PMS isn’t something that has been studied a huge amount. For Dr. Leila Frodsham, a consultant obstetrician and gynaecologist, the key thing, she says, is listening to what your patient is saying. “If someone is really distressed,” she says, “even if their symptoms don’t sound as severe as other people’s, it’s important to treat people as an individual. You will get some people with severe symptoms who don’t want treatment. You can also get women who have distinct personality changes where they can get quite violent and maybe become a risk, so that would be a treatment indication.”
In terms of the treatment out there, SSRIs — a type of antidepressant drug — are prescribed by a lot of doctors, along with counselling. “Usually PMS can be managed by your GP and counselling can often be helpful,” says Dr. Sadler. “But sometimes on the severe end of the spectrum, a woman may need to see a gynaecologist or a psychiatrist.”
Dr. Frodsham adds that she gets a lot of patients who are keen to look at diet and exercise first, and who chose to go medical if their symptoms get even more severe. “The Royal College of Obstetricians and Gynaecologists (RCOG) has guidelines that suggest first line treatment would be consideration for SSRI, which would include fluoxetine, citalopram, and others. While these are traditionally used as antidepressants, there is very good evidence in premenstrual phase women that they can have a drop in their serotonin,” she says. “There are lots of other things women can do. A classic treatment is to put a Mirena coil in and have topical oestrogen so there are no fluctuations in progesterone.”
According to Dr. Studd, the key is to focus less on antidepressants and instead concentrate more on suppressing progesterone. “The cause of PMS is ovulation and the chemical changes that follow ovulation, which is essentially progesterone,” he says. “So these women are progesterone intolerant, they have symptoms when the progesterone levels rise. Therefore the logical way of treating PMS is to suppress ovulation and suppress the hormonal changes.”
In total her symptoms last for about a week, then her period lasts for a week and “life is good again” — for a week
In a bid to keep her symptoms under control, Sarah takes the antidepressant fluoxetine, but having taken it for 18 months, she now finds that her symptoms are coming back. Laura, too, has been on SSRIs for nearly ten years, and is also on hormone therapy, using oestrogen patches and progesterone pessaries that are inserted into the vagina. She also now uses a GnHr nasal spray which shuts down her natural hormone production, often referred to as being “put into chemical menopause”. While this makes things bearable, it is not a cure, although such therapies can help women with the condition get their lives back on track.
Like Laura and Sarah, 46-year-old Anne Jenkins, who works for a landscaping business, waited many years to get a diagnosis for her extreme PMS. When she went to the doctor, aged 41, she was put on contraceptive pill Yasmin for her mood swings and heavy bleeds. For her, Yasmin seemed to work for a time and she enjoyed feeling better, until a blood clot in her leg meant she had to come off the pill immediately.
Instead, she had the Mirena coil inserted. However, some stressful personal circumstances combined with a drastic life change made her mood swings worse. Anne’s symptoms begin a week before her period starts. “Things usually start with a bad headache, probably like a migraine, for two days,” she says. “This is followed by anxiety, low self esteem, being on a short fuse and over-sensitive to other people’s emotions and comments.” On top of that she loses her sense of humour, needs to be left alone, and suffers from extreme tiredness as well as having a big drop in her libido.
Worryingly, she also loses her memory, forgetting what she is meant to do or meant to have done, and she becomes clumsy. She struggles to focus so is forced to avoiding driving when things are particularly bad, and craves certain foods, often binge-eating for two or three days. In total her symptoms last for about a week, then her period lasts for a week and “life is good again” — for a week. “Before I was on sertraline, an SSRI,” Anne adds, “my anger knew no boundaries. I was close to self-harming and literally wanted to die two or three times a month. I have short cycles, 20 days in general, so mood swings came often.”
Her partner was the one who started tracking her periods. Although Anne had been aware there could be a link, she hadn’t been bothered to do it herself. She went to a GP who luckily had heard of PMDD and understood fully what she was going through. It was then that she was prescribed the sertraline which she describes as a “life saver” but says knowing that those two years, and many more, of hell could have been prevented makes her sick.
There are now a huge range of support services out there to help women with severe PMS, including NAPS. “In general practice, doctors have to deal with a wide range of conditions,” says Dr. Sadler. “So individually every GP will have their own areas of expertise and knowledge. That’s why at NAPS what we do as a charity is try and promote awareness of this condition and spread the word about effective treatment for it and to ensure it becomes more widely recognised.”
Editor’s note: PMDD was added to the DSM-5, a diagnostic handbook for mental health disorders, published on 18 May 2013. The DSM is primarily used in the US but is also used and referred to by healthcare professionals in the UK. The World Health Organisation’s International Classification of Diseases (ICD) is also used in the UK, and PMDD was added into the ICD-11 in June 2019
- International Association for Premenstrual Disorders, About PMDD, [website], https://iapmd.org/facts-and-figures/ (accessed 27 June 2019)