Between 20% and 85% of people who menstruate experience PMS – but far fewer people (around 5%) experience Premenstrual Dysphoric Disorder (PMDD).
As result, there’s significantly less information out there, leaving sufferers to self-diagnose or struggle in silence.
What is PMDD?
PMDD is generally understood as “severe PMS”, though that only tells half of the story. The condition generally entails acute physical and/or emotional symptoms in the second half of your cycle, one to two weeks before your period is due.
Physically, people with PMDD might experience:
Emotional symptoms can be particularly distressing. PMDD can cause:
- difficulty concentrating
- in severe cases, suicidal thoughts
Sufferers of PMDD can find that they have difficulty working or studying or that their personal relationships can be put under stress in the weeks before their period.
What causes PMDD?
Not much is currently known about what causes PMS and PMDD, but researchers believe they are linked to changes in hormone levels.
At the end of your menstrual cycle, once you’ve ovulated, if you’re not pregnant you experience a drop in oestrogen and progesterone.
Research suggests that people with PMDD have an increased sensitivity to the normal hormonal fluctuations that occur during your menstrual cycle.
Differently to PMS, PMDD is also particularly common in women who have a history (or family history) of depression – suggesting a genetic component – or who have experienced postpartum depression.
Getting a PMDD diagnosis
Due to the emotional symptoms of the disorder there’s a tendency to misdiagnose PMDD with other mental health issues, such as bipolar disorder or depression.
The lack of knowledge and research on the disorder means it can generally be hard to get a diagnosis – so it’s important to keep track of your symptoms on a calendar or diary.
In order to demonstrate that you’re suffering from PMDD you will have to show that there is a definite link between your menstrual cycle.
In fact, in order to receive a confirmed medical diagnosis of PMDD, you need at least five out of 14 symptoms.
Namely, that over several months PMDD symptoms appear in the weeks leading up to your period, and that they stop shortly after your period has begun.
The diagnostic symptoms for PMDD include:
- Mood swings, feeling suddenly sad or tearful, irritable, anxious or hopeless
- A decreased interest in usual activities
- Finding it hard to concentrate
- A change in appetite (overeating or specific food cravings)
- Hypersomnia or insomnia
- A sense of being overwhelmed or out of control
- Physical symptoms such as breast tenderness or swelling; joint or muscle pain, and bloating
It’s common to experience all of the above at some point in your life, but in the case of PMDD you’re likely to experience at least five of these every month before your period arrives.
These symptoms are also typically so severe that they interfere with school, work, relationships and other social activities.
For those with a different cycle, or with a non-textbook experience of PMDD, it can be even harder to demonstrate that they’re suffering from the disorder.
How to treat PMDD
Treating PMDD isn’t easy, given the range of symptoms you can experience. As a first course of action, your doctor will likely recommend lifestyle changes to help manage the symptoms of PMDD.
These include regular exercise, regular sleep, stress reduction (easier said than done, we know!), and restricting smoking and alcohol intake.
Although there is limited evidence to support the use of complementary treatments, your doctor may also suggest reflexology, acupuncture, or dietary supplements like magnesium.
Implementing these lifestyle changes might make PMDD symptoms more manageable, but you may still need further treatment.
Common medical approaches include prescribing the pill or antidepressants like SSRIs, though these are not always effective for all people. In some particularly severe (rare) cases, where other treatments are not working and your life is significantly impacted by PMDD, your doctor might suggest a hysterectomy.
The lack of awareness around PMDD, coupled with the fact that women are often discouraged from talking about their periods, means that women struggling with PMDD can struggle for a long time without a diagnosis.
This was the experience of Helena, 24. “My PMDD experience is a bit atypical as one month I’ll be fine and then the next month I’ll experience symptoms. I get very, very depressed and become really self-destructive in my life,” she says, explaining her symptoms.
“For a long time, I kind of just thought it was PMS but when I was describing it to other people, I realised how bad it is, it stopped me from living my life as normal.”
Whilst its been a bumpy road, she can now say that her experience with PMDD has greatly improved, though she turned to alternative treatments rather than anything offered by the NHS.
“The main thing the NHS can offer is antidepressants – either all the time or for the weeks where you’re experiencing symptoms,” she explains. “I didn’t want to be on SSRIs, so I’m using 5HTP (an amino acid used to stimulate serotonin production) at the moment. Whether it’s a placebo effect or not, it does make me feel better.”
Regardless of what treatment options women choose to pursue, she thinks that there needs to be more information out there so that it’s easier for them to seek medical help. “I think it would be good if there was more awareness,” Helena says. “It means you don’t really have to try and self-diagnose.”
For Sophie, 23, an ignorance amongst medical professionals and sexism were major stumbling blocks in the process of having her condition recognised. “I first found out about PMDD and thought that I might have it in autumn 2017 but there were a lot of complications with my diagnosis and it took a long time,” she says.
“A lot of doctors I went to see either didn’t know what PMDD was or didn’t take me seriously even when I had tracked my mood and my cycle for months and found the link."
The sexism and gaslighting which Sophie has experienced has made her feel strongly that the stigma around PMDD needs to be broken. “When I got my diagnosis I felt like it was quite an embarrassing problem to have or like I just wasn’t coping with what everyone else who gets periods successfully copes with,” she explains.
“There definitely needs to be more awareness about it, especially considering some doctors I spoke to didn’t even know what it was and it should be taken as seriously as other mental health issues.”