An interview with Dr Thomas Reilly elucidates some of the mystery surrounding premenstrual dysphoric disorder. Photo credit: Anthony Tran via Unsplash
Disclaimer: This article mentions self-harm.
N.B: This piece uses the term ‘women’, however the article does not aim to exclude individuals suffering from PMDD who do not identify with this term.
In Greek mythology, Sisyphus was doomed for all eternity to push a rock up a hill only for it to roll back down each time it neared the top. This tyrant’s punishment gave rise to the modern concept of “Sisyphean tasks”, or objectives which are both laborious and fruitless. Though Sisyphus is the male protagonist of this myth, his experience mirrors that of many suffering from Premenstrual Dysphoric Disorder (PMDD), a severe form of Premenstrual Syndrome (PMS). Up to 75% of people who menstruate experience mild PMS, which is often characterised by bloating, fatigue, mood swings, and changes in dietary and sleeping habits a few days before their period. PMDD, however, is a rarer and more extreme form of PMS which is thought to affect 3.2% of women. The cause of PMDD is unclear, but it results in an abnormal response of the body to normal hormonal fluctuations experienced throughout the menstrual cycle. Thus, like Sisyphus, women with PMDD undergo a few weeks of health and progress, pushing the rock up with might, followed by deterioration in the latter half of the month when hormones awaken, and PMDD symptoms unravel their lives.
In order to spread awareness of this debilitating disease and break the stigma surrounding women’s psychiatric health, I interviewed Dr Thomas Reilly. A specialist registrar at the National Female Hormone Clinic, he is a researcher at the University of Oxford’s Department of Psychiatry and an expert in PMDD. Therefore, let’s learn more about this disease, which, while often mistaken for myth, has very real consequences for women.
EP: What is PMDD, and what do we know about it?
TR: PMDD is a cyclical mood disorder. Unlike other psychiatric disorders, it’s decided by its timing. To diagnose a patient with PMDD, symptoms have to be present in the premenstrual phase (in the week before menstruation) and they must become minimal/absent in the week following menstruation. These can be both physical and mental. Cognitive symptoms include concentration difficulties, and memory problems. Lability, anxiety, irritability, and depression, as well as suicidal ideation are also associated with PMDD. Physical symptoms can include fatigue, fluid retention, joint pain, and changes in appetite and sleep. There are also manifestations one would not associate with the menstrual cycle, such as exacerbation of pre-existing mental disorders, migraines, and for some, menstrual epilepsy. These symptoms are incredibly disruptive to patients’ lives. PMDD can also prove difficult for interpersonal relations, and patients often struggle to function at work for a certain amount of time. Symptoms then subside after menstruation, and women are left to pick up the pieces for the rest of the month. It is incredibly disruptive.
We know more about PMDD than other mental disorders since it is caused by hormone fluctuations, and we can experimentally manipulate hormones in studies. Classic experiments back in the 90s demonstrated, in a double-blind fashion, that PMDD symptoms were controlled by the suppression of oestradiol and progesterone. Symptoms were once again provoked when the hormones were reintroduced in PMDD patients, but no mood changes were observed in the healthy controls.
What we don’t know about PMDD is why some women are vulnerable while others are unaffected.
EP: What could make a woman susceptible to PMDD?
TR: There is no conclusive research done to confirm the cause of PMDD. However, there are a lot of risk factors. PMDD patients commonly report past trauma in their lives, yet whether this is causative or correlated is still unknown. There are also many comorbidities with neurodevelopmental disorders such as ADHD, depression, and anxiety.
There is no conclusive research done to confirm the cause of PMDD.
EP: If PMDD is a mood disorder, what are its effects on relationships with partners, children, friends, or even colleagues?
TR: During PMDD episodes, a woman can be a completely different person. Individuals during this time are much more susceptible to anger and have a real sense of rage. This affects their relationships, causing distress and impairing their functioning. Women with PMDD often have a lot of regret. For example, they might quit their job in the premenstrual period due to intense feelings, and then regret it once their period arrives.
EP: Based on your work at the clinic, do you think it causes women to psychologically suffer more from PMDD when their symptoms are undermined and brushed off, independent of them not being properly diagnosed and treated?
TR: I do, but I think a big part of the difficulty in the UK is the fact that there is a lack of recognition for PMDD and lack of clinical services for it. General practitioners (GPs) should have some kind of knowledge, but since they are spread so thinly, patients often fall through the gaps between GPs, consultant gynaecologists, and mental health services. It’s a shame because there is good evidence-based treatment available. Often patients can do their own research and discover they have PMDD, but finding a health professional to take them seriously can still be a struggle.
EP: You have mentioned previously that there are good treatment options for PMDD. What are some of them? What are some common side effects?
TR: Selective serotonin reuptake inhibitors (SSRIs) are the first line of treatment as they are the best evidence-based treatment for PMDD. These are commonly used to treat depression, but the effect size of SSRIs as a PMDD treatment is bigger than that for depression. As a result, SSRIs can be prescribed intermittently. In addition, SSRIs start to affect PMDD symptoms within 48 hours, unlike for depression. However, patients may feel upset when the GP prescribes SSRIs as if they have depression, so it’s important to tell the patient it’s being prescribed for PMDD specifically. Common side effects of SSRIs are sexual dysfunction, nausea, and sleep disturbances. However, they do seem to work for 60–70% of PMDD cases.
Birth control, or the combined oral contraceptive pill, is also recommended as a first-line treatment alongside SSRIs. High steady levels of hormones should prevent ovulation and control symptoms. For a subset of female patients, there is a negative reaction to these, which we think is caused more by the progestogen component of the pill; this has a negative effect on mood. The combined pill, the mini pill, the contraceptive injections, and the implant all have progestogen. Again, there is no conclusive research, but anecdotally progesterone-based birth control has a more negative impact than other forms of pill. Another treatment option is to give oestrogen as a patch or gel, as this latter form decreases the risk of blood clots. The issue with oestrogen alone, however, is that it increases the risk of endometrial cancer, so progesterone needs to be prescribed alongside oestrogen to prevent this. The only time you can have oestrogen alone is if the patient’s uterus has been removed.
EP: Some women have extremely debilitating side effects with PMDD, and may not respond to SSRIs or contraceptives, so they choose to have a hysterectomy or oophorectomy (removal of uterus or ovaries respectively). However, doctors often reject this treatment option despite patient consent. Is there an underlying societal factor behind this such as female reproduction often being turned into a political debate? Or are there legitimate medical reasons for healthcare professionals’ hesitation to carry out these procedures?
TR: I can’t really comment on the societal aspect of women’s rights. However, if someone was having a hysterectomy for PMDD, this is a big decision and a last-line treatment. Surgical procedures are going to have risks, and having a hysterectomy means hormones are completely taken away. This has a detrimental effect on physical health. For example, after the procedure, hormones need to be added back to the body, such as oestradiol to ensure bone health.
To give patients an idea of what they would experience once their uterus is removed, gonadotrophin-releasing hormone (GnRH) analogues are used to artificially induce menopause.
EP: What are some of the most common outcomes of a lifetime suffering from PMDD? What are some of the more extreme cases?
TR: I don’t want to paint it too negatively as good treatment options are available. I think it is a very treatable condition. However, it does have a significant impact on patient’s lives. PMDD can also be a risk factor for post-partum depression. Indeed, allopregnanolone, a metabolite of progesterone and a positive modulator of GABA receptors, is thought to play a pivotal role in PMDD. Allopregnanolone-based medication is also an approved treatment for post-partum depression. In addition to post-partum, the time leading up to perimenopause can be worse for PMDD patients. Usually, however, symptoms go away during pregnancy, and post-menopause patients should no longer have significant symptoms.
EP: You mentioned we’ve known about PMDD since the 90s, so why is the world only tuning in now?
TR: One point I would make is that there is quite good rigorous research done for diagnosing PMDD compared to other mental health conditions. However, it was only in 2013 that the Diagnostic and Statistical Manual 5 (DSM 5) included PMDD as an actual disorder, so it’s only been recognised as a condition in the past decade. I guess the reason why it took so long to get recognition for PMDD despite thorough research would probably be a trend of disregarding women’s health in the medical world. On top of this, there’s the idea that you shouldn’t medicalise anything connected to the menstrual cycle as a disorder. Previously, PMDD has also been dismissed as a western-bound syndrome, with claims that it is only a problem in richer countries. However, it is driven by underlying hormonal fluctuations and not merely as a response to society. Interestingly, the International Classification of Diseases (ICD) does not classify PMDD as a mental disorder, but a genital urinary disorder.
Interestingly, the International Classification of Diseases (ICD) does not classify PMDD as a mental disorder, but a genital urinary disorder.
The treatment options are there, and the knowledge is there. I’m sure there is much more we can find out at the molecular level—especially about oestrogen and progesterone. But the real problem is the lack of awareness from medical professionals and treatment services available.
EP: I guess I have one last question, Dr Reilly. If a patient comes to you, what do you tell them to help them to cope with PMDD?
TR: I try to validate what they are experiencing. I also try to validate the fact that they tried to get treatment but may not have found healthcare services very forthcoming. Then it’s the case of working out what treatment is best for them.
How can one expect to truly treat a condition or even validate it, if the origin remains unknown?
Thanking Dr Reilly, I appreciate that he has dedicated his research career to improving our understanding of this disease. He has also spread awareness of PMDD through his blog (learn more at Rational Psychiatry). However, while Dr Reilly believes PMDD only affects a small subset of women, the fact that 35–70 million individual live with this debilitating disorder, and may not be getting the treatment they need, is concerning. In addition, minimal research is being carried out on the root cause and molecular mechanisms that have gone awry in PMDD. How can one expect to truly treat a condition or even validate it, if the origin remains unknown? Coming from the perspective of someone whose life has been devastated by this illness, the anger inside me is not just hormonal rage. We recognised Sisyphus’s tired plight thousands of years ago. It’s time to recognise that of women now.
Glossary:
Lability: mood swings
Oestradiol: one of the major oestrogens (female steroid hormone) produced by ovaries
Progesterone: steroid hormone, which stimulates the uterus to prepare for pregnancy.
Effect size: statistical measure of the difference or relationship between two group variables
Progestogen: a class of natural or synthetic steroids (including progesterone) that maintains pregnancy and prevents further ovulation during pregnancy. Progestogens are found in contraceptives.
GABA receptors: ion channel which binds GABA, the major inhibitory neurotransmitter (chemical substance released by nerves) in the central nervous system. GABA receptors play vital roles in inhibiting and reducing nerve impulses.
Perimenopause: a natural transition into menopause, characterised by hormonal changes and menstrual irregularity
