What is Premenstrual Dysphoric Disorder?

A woman’s menstrual cycle normally occurs monthly throughout a woman’s reproductive years as the lining of the womb gradually grows in thickness and is shed at menstruation (the period). The average length of the menstrual cycle, that is from the first day of bleeding to the first day of another cycle, is 28 days; however, this is only an average and can vary greatly between women. Individual women may also find that the length of their menstrual cycle varies from month to month.

Up to 80% of women get some symptoms during the premenstrual two-week phase of their menstrual cycle. Around 20-30% of women will get significant premenstrual symptoms (PMS); however, for an estimated 5-8% of menstruating women – around 800,000 women in the UK – these symptoms are greatly amplified, and this is the most severe form of PMS, known as Premenstrual Dysphoric Disorder or PMDD for short.

What is premenstrual dysphoric disorder?

Premenstrual dysphoric disorder (PMDD) is a serious condition that affects some women in the week or so before their period; they become extra sensitive to the hormones that spike during that time. It is characterised by distressing physical, behavioural and psychological symptoms that regularly recur during the luteal phase of the menstrual cycle – this is from ovulation to the onset of a period – and that disappear or significantly diminish by the end of the period – that is menstruation.

The more severe form of PMDD is classified in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR) as a mental illness.

Who can get PMDD?

The onset of PMDD can be at any time after puberty and affects women of childbearing age; that is from puberty when a woman starts getting her menstrual period to menopause when she stops menstruating.

Some women suffer from PMDD from puberty, while for others it is triggered along the path of their reproductive life, so all hormonal interruptions such as hormonal birth control, having children, miscarriages, gynaecological procedures, perimenopause etc. can all trigger PMDD.

Some women may be more prone to PMDD than others. This may include women who have a history of anxiety or depression, PMS, or if there is a family history of PMS, PMDD or mood disorders such as:

• Bipolar disorder.
• Mood disorder related to another health condition.
• Substance-induced mood disorder.

What are the signs and symptoms of PMDD?

Symptoms of PMDD typically start 5-8 days before a woman’s period but can begin earlier, and they often go away once the period begins. Some women may experience symptoms continuously from ovulation to menstruation, for about 7 days before, at ovulation for 3-4 days and again just prior to menstruation. However, others may experience PMDD in other patterns. Some women do not experience relief from symptoms until the day of the heaviest flow of their period.

PMDD causes emotional and physical symptoms similar to PMS, but women with PMDD find their symptoms more draining and exhausting. PMDD symptoms could interfere with daily life, including work, school, home and social life, and relationships. Specific symptoms of PMDD can include but are not limited to:

• Aggression.
• Anxiety.
• Appetite changes.
• Bloating.
• Breast tenderness.
• Clumsiness.
• Conflict with other people.
• Cramps.
• Depression.
• Fatigue.
• Feeling out of control.
• Feelings of hopelessness.
• Food cravings.
• Headaches.
• Hot flushes.
• Intense anger.
• Irritability.
• Joint or muscle pain.
• Lethargy.
• Mood swings.
• No interest in your usual activities.
• Sleep problems.
• Tearfulness.
• Tension.
• Trouble concentrating.
• Weight gain.

No-one experiences all of the identified symptoms. One or more symptoms may be dominant for an individual woman; however, most doctors would look for at least five of the above symptoms to be present to diagnose PMDD. Each symptom may vary in severity during a menstrual cycle and from one cycle to another and new symptoms may present during a woman’s experience of PMDD.

After symptoms disappear, generally around the onset of their period, many women report overwhelming feelings of guilt which can lead to over-compensatory behaviours. Women with PMDD alternate between this good and bad state every month, which can have a long-term impact on their overall health and wellbeing.

Premenstrual symptoms such as PMDD will usually cease when women become post-menopausal, typically one to two years after their final menstrual period. This is because the hormonal fluctuations which trigger the symptoms become much calmer and eventually settle down completely. For most women, menopause occurs around the age of 50; however, more than 1% of women go through the menopause early, that is before the age of 40.

What causes PMDD?

Experts don’t appear to know the exact cause as to why some women suffer from PMDD. PMS and PMDD appear to begin and increase in severity at times of marked hormonal change. As PMDD is absent before puberty – the onset of menstruation – in pregnancy and after the menopause, there is clear indication that cyclical ovarian activity is an important factor in explaining PMDD. Hormone levels change throughout the menstrual cycle, so decreasing levels of oestrogen and progesterone hormones after ovulation and before menstruation may trigger symptoms. Essentially a woman’s hormones are normal as PMDD is not a hormonal imbalance, but the body’s reaction to those hormonal fluctuations is abnormal.

Serotonin, a brain chemical that regulates mood, hunger and sleep, may also play a role, as serotonin levels, like hormone levels, change throughout the menstrual cycle. Many women with PMDD may also be suffering with unconnected anxiety or depression.

What are the risk factors of PMDD?

Some women may be more likely to suffer with PMDD than others.

The risk factors can include:

• Stressful lifestyle.
• History of depression and anxiety.
• Obesity with BMI more than 30.
• Smoking.
• Age – women between 20 to 35 years often have stronger ovulation and may have more PMDD symptoms.
• Genetic risk factors – other family members have suffered with the condition.

How is PMDD diagnosed?

If the symptoms of PMDD are affecting your wellbeing, quality of life, work or relationships, it is important to see your GP as soon as possible. However, getting a diagnosis can be a struggle as many GPs haven’t heard of PMDD, or may put the symptoms down to PMS or another condition. Some women have reported that they have been misdiagnosed with bipolar disorder as many of the symptoms of PMDD are similar. It is helpful to keep a diary of PMDD symptoms which will help the GP assess the severity and cyclical nature of your symptoms.

There is currently no blood or saliva test to confirm PMDD; however, doctors should arrange blood tests in order to rule out other conditions such as endometriosis, fibroids, menopause, and hormonal problems. If these conditions are ruled out but your doctor still does not recognise PMDD as a possible issue, you may need to ask your doctor to refer you to a gynaecologist who specialises in premenstrual syndromes.

To make a diagnosis for PMDD, doctors will require tracking of the symptoms for a minimum of two menstrual cycles showing consistent patterns in behaviour and mood. My PMDD is a useful app to download to help track and record the symptoms. The symptoms must not be present at other times through the cycle, they must also be causing significant impairment, and must not represent an exacerbation of another disorder, and at least one symptom-free week must be present for PMDD to be diagnosed.

Untreated PMDD can lead to depression and, in severe cases, suicide. A BBC article reports that up to 15% of PMDD sufferers have attempted suicide as they have found the disorder so debilitating. The disorder can cause severe emotional distress and it can negatively affect relationships and careers, so it is so important to contact your GP to get a formal diagnosis to be able to find the right treatment and support for you.

How is PMDD treated?

Treatment for PMDD may vary depending upon the individual and the symptoms presented. In many cases, PMDD can be treated by prescribing the contraceptive pill which evens out the hormonal levels by blocking ovulation. Sometimes, interventions such as cognitive behavioural therapy (CBT) may be helpful. For severe mood-related symptoms, your doctor may suggest taking a selective serotonin reuptake inhibitor (SSRI) medication, which also works as an anti-depressant.

Some over-the-counter pain relievers such as aspirin, paracetamol, ibuprofen and nonsteroidal anti-inflammatory drugs (NSAIDs) may ease symptoms such as headache, breast tenderness, backache and cramping. Diuretics, also called “water tablets”, can help with fluid retention and bloating.

In very severe cases the doctor may suggest a total hysterectomy. All surgery carries a risk of complications and this surgery is non-reversible, so this would only be something to consider when all other possible treatments have been tried and nothing has worked. The surgery would not be appropriate for anyone wanting to get pregnant.

Living with PMDD

There are several steps you can take to help manage your PMDD symptoms that might provide relief for some of the symptoms, such as:

• Actively practising mindfulness.
• Relaxation therapy.
• Meditation.
• Reflexology.
• Yoga.

Eat a balanced diet. It has been suggested that phytoestrogens such as soy isoflavones in soya foods and lignans in linseeds, may help reduce physical symptoms such as headaches/migraines. The essential fats in fish have been shown to improve mood symptoms and pain. Good sources include salmon, mackerel and sardines. The fats in linseeds and pumpkin seeds will give you some of the benefits if you don’t want to eat fish. Green vegetables are an important source of both magnesium, which is often deficient in women with PMS and PMDD, and folic acid, which is important for hormone balance. In addition, filling your plate with low glycaemic index vegetables such as salad or greens rather than high GI starches such as potatoes or white rice, is a good way to reduce the glycaemic index of your diet.

Having a high fibre diet with lots of vegetables can help improve some PMS and PMDD symptoms. Cut down on excess sugar and white refined carbohydrates such as pizza and white bread. These carbohydrates cause a rapid release of blood glucose, which may affect mood swings and cravings as well as contributing to weight gain, making your symptoms worse. Useful switches include changing white bread for heavy wholegrain rye bread, white rice for basmati rice, and potatoes and chips for pulses, beans or sweet potatoes. Eating a little and often can also help keep blood glucose levels stable.

Also, it can also be helpful to:

• Avoid alcohol and other substances, as these can contribute to anxiety symptoms.
• Avoid caffeine – high caffeine consumption has also been associated with an increased incidence of PMS and PMDD, and it may make breast tenderness worse for some women, so limit consumption each day.
• Reduce salt intake – salt encourages water retention so it is important to follow the national guidelines of less than 6g per day for adults.
• Get eight hours of sleep each night.
• Get regular exercise.
• Minimise stress, through lifestyle changes.
• Quit smoking.

There are support groups available for anyone suffering with PMDD; these include:

• PMDD Awareness UK.
• National Association for Premenstrual Syndromes (NAPS).
• Samaritans 116 123 (freephone) jo@samaritans.org.

In the workplace, if your condition is affecting your ability to perform your job, you need to speak to your employer and make them aware of the impact of your condition and how it is affecting you in your job role. Disclosure is frequently cited as one of the most challenging aspects of having a condition such as PMDD, especially in relation to employment. Whether or not a person discloses the condition is entirely their choice. However, without this information, reasonable adjustments cannot be put in place, which may have a long-term impact on the employee.

The Equality Act 2010 stipulates that either a physical or mental (or combined) impairment which substantially and adversely affects your ability to conduct everyday activities which is or could be in existence for longer than 12 months, may constitute a Disability. So if your condition fulfils these requirements, your employer should afford you dispensation for your condition. This means that your employer has a legal duty to make reasonable adjustments to your work, work station or work pattern. This could also be prevention from triggering disciplinary action for absences connected to your condition.

Some women have found that flexible working helps them to work around the condition. They are able to plan their work schedules around their symptoms, working from home at times when their symptoms are at their worse, minimising the need to take sick absence.

Final thoughts

According to the Government’s Office for National Statistics (ONS), there were 15.52 million women in the UK aged 16 and over in employment in October to December 2021 and women workers account for over three quarters of all jobs in the health and social work sector. Even if a very small percentage of these women in the workforce suffer from PMDD, there is a very real impetus for employers to make PMDD a workplace issue.

Due to the chronic and repetitive nature of the condition, PMDD is classed as a disability under the Equality Act 2010. This means that reasonable adjustments should be made to help employees with PMDD. It is important to remember that each person with the condition will experience PMDD differently, so understanding the specific needs of the individual is critical. Failure to do so may result in an employment tribunal on the grounds of discrimination. Employers should endeavour to encourage disclosure by their employees in order to create an inclusive environment.

Some initiatives to help to support workers with PMDD that employers could introduce might include:

• Holding a meeting with the member of staff to discuss what can be done to help them
• Finding out more about the condition and its typical effects on someone at work
• Considering PMDD absence as separate to sickness/illness absence, in order to prevent the person from being penalised by strict absence measures
• Allowing a gradual return to work after periods of absence relating to PMDD
• Enabling working from home, reduction in hours or relief from some responsibilities to prevent having to take time off sick during the PMDD episode
• Providing staff, especially line managers and HR, with PMDD awareness training
• Having clear procedures in place for when someone discloses PMDD and ensuring that they are implemented
• Encouraging managers to focus on staff wellbeing
• Ensuring staff have access to good support services, including occupational health