It is estimated that at least 1 in every 20 people of menstruating age (which includes women, transgender and non-binary) in the UK, suffers with extreme Pre-Menstrual Syndrome (PMS) or Pre-menstrual Dysphoric Disorder (*PMDD) yet many doctors have never even heard of it, let alone know how to treat it. Pre-menstrual Dysphoric Disorder (PMDD) is a severe form of pre-menstrual syndrome (PMS), causing symptoms that are severe enough to interfere with a person’s daily life and relationships. The symptoms of PMDD are similar to those of PMS, but are more exaggerated and generally have more psychological symptoms than physical ones. PMDD is thought to affect roughly 800,000 people in the UK.
What are the symptoms?
Due to the wide impact of hormones on the body, PMDD can result in a wide variety of symptoms, which may vary in severity, and differ from month to month. Symptoms may be experienced at different time points; some suffer continuously from ovulation to menstruation, others for 7 days before menstruation, and some have their worst symptoms at ovulation. Symptoms may end with the start of a period, though some do not experience relief from symptoms until the day of the heaviest flow, or even the end of their period. However, most sufferers should have around two weeks per month where they feel ‘normal’, with no symptoms. You may suffer from some or all of the following:
Psychological/behavioural symptoms (specific to PMDD):
- 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
- extreme tension and irritability
Psychological/behavioural symptoms (both PMS & PMDD):
- mood swings
- feeling upset or emotional
- feeling irritable or angry
- difficulty concentrating
- confusion and forgetfulness
- decreased self-esteem
- loss of libido – loss of interest in sex
- appetite changes or food cravings
Physical symptoms (both PMS & PMDD):
- feeling bloated
- pain and discomfort in your abdomen (tummy)
- muscle and joint pain
- breast pain
- trouble sleeping (insomnia)
- weight gain (up to 1kg)
- Any long-term (chronic) illnesses, such as asthma or migraines, may get worse.
How is PMDD diagnosed?
There is no test for PMDD, and the only reliable method for diagnosis is keeping a diary of symptoms for 2 or 3 months, which can then be shown to a doctor. Blood tests will not show up PMDD as hormone levels are usually within normal range; it is the sensitivity to fluctuations that causes the issue. Your GP should still run blood tests to rule out other conditions.
What is the cause?
Evidence shows that people with PMDD have normal hormone levels, but appear to be abnormally sensitive to fluctuations in the ovarian hormones oestrogen and progesterone that occur as part of the menstrual cycle.
As of January 2017, new research suggests that PMDD may have a genetic cause, however there is not sufficient evidence to prove this yet. PMDD symptoms can occur in anyone who menstruates (has a monthly bleed/ovulates each month), and can begin at times of severe hormonal fluctuation, for instance at the onset of a first period, after pregnancy, or just prior to the menopause. PMDD/PMS does not discriminate and has no regard for race or economic status.
The implications of PMDD can affect the whole family, not only sufferers but also partners and children. There will be families where PMS is experienced by successive generations, but equally there are PMS sufferers with no family members afflicted.
Defined as a mental health issue, and often treated as such, sufferers of this often debilitating syndrome, know that the mental health issues that present themselves are actually symptoms of an underlying cause very much linked to their menstrual cycle.
*It is important to note that in the UK, the term ‘PMDD’ is not often used by doctors or professional organisations, and it is usually described as ‘severe PMS’. Doctors may dislike ‘PMDD’ because the word ‘dysphoric’ is associated with psychiatric disorders and suggests that the condition has a psychiatric origin rather than being caused by hormones. This means that a patient will rarely get a diagnosis of ‘PMDD’ in the UK, but it should not prevent them receiving proper treatment.
Help & Support
Here is a list of websites that offer more information on extreme PMS/PMDD:
(UK) Royal College of Obstetricians and Gynaecologists (RCOG),
(UK) UK PMDD Support – free facebook peer support group for those in the UK
(USA) Gia Allemand Foundation – formerly NAPMDD