Illustration: Karolina Burdon

WOMBS ETC

Is healthcare failing women when it comes to PMS?

GPs are often uninformed, and treatment is limited unless you can afford to go private. What can be done to help extreme PMS? Eleanor Morgan reports 

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By Eleanor Morgan on

Bleeding from your vagina every month can be a pain in the arse – and everywhere south of the belly button. Getting through those few days of gnawing discomfort often depends on the medicinal scaffolding of painkillers and dough-based foods. For some women, though, the onset of physical pain actually brings mental release: a trade-off that feels like some kind of cruel sorcery.

Nearly all women of childbearing age have some discomfort with PMS (pre-menstrual syndrome) – a cluster of physical and psychological symptoms that generally occur between ovulation and day one of bleeding. Every woman is different, but symptoms can include bloating, breast swelling and pain, digestive upset, anxiety, depressive symptoms, irritability, changes to libido, clumsiness, tiredness, weight gain and sleep disturbance.

For women with pre-menstrual dysphoric disorder (PMDD), a more severe type of PMS, psychological symptoms – depression, hopelessness, extreme anger – make everyday functioning very difficult. Studies suggest that almost 15 per cent of women with PMDD attempt suicide. Not just grumpily craving Lindt balls under a duvet, then, but hormonal warfare.

You’d think, in 2017, considering such widespread distress, that PMS would be widely understood. The reality, as many women will attest, is quite different. Misinformation, misdiagnosis and stigma is rife. This is worth exploring.

As yet, there’s no precisely defined cause of PMS and no panacea –such is the complexity of the brain and its neurochemistry. We’ll likely never understand exactly how it all works. PMS is thought to be due to fluctuations in hormones involved in the menstrual cycle. That it improves during pregnancy and post-menopause, when these fluctuations stop, supports the theory.

Current NICE Guidelines suggest a primary care (your GP) management programme including oral contraceptives, SSRI antidepressants and referrals for CBT to address associated psychological issues. Only, what if your GP doesn’t take PMS seriously?

A psychologist recently told me, off the record, that this area of women’s health is “a complete shitshow”. A conversation with my cool, usually right-on GP revealed that she didn’t know what PMDD was. So what if our caregivers are not up to date on research into the efficacy of treatment options? What if the research itself is lacking?

Hannah Ewens, a 25-year-old journalist in London, has experienced extreme distress before her period since the age of 15. Her journey has involved several “completely bewildered” GPs. After an initial misdiagnosis of bipolar disorder – common – a link between her mood fluctuations and her cycle was established by a psychologist, though many years of suffering ensued.

You’d think, in 2017, considering such widespread distress, that PMS would be widely understood. The reality, as many women will attest, is quite different

“I tried everything,” she tells me. “Changing [contraceptive] pills, not taking the pill, supplements, different antidepressants, everything. I’d spend at least three days suicidal.” Eventually, Ewens demanded her GP refer her to a gynaecologist. He resisted, but eventually acquiesced: “I knew my rights and was armed with print-outs of my own research on PMDD.”

Since January 2016, as a result of that referral and the dual treatment of oestrogen gel and a Mirena coil that releases small amounts of progesterone – a combination that completely suppresses the cycle – Ewens has seen a phenomenal improvement in her mental health.

“I still get anxiety,” she says. “But absolutely nothing compared to before."

Ewens’ story is extreme, but that initial perplexity of her GP will ring true for many women. I recently went to mine to discuss my own fluctuating anxiety levels that, like clockwork, chime with ovulation. After years spent trying to manage this with everyday anxieties – hey, I wrote a book about it! – I wanted to discuss my options as it’s getting worse as I get older.

My GP initially prescribed Cerazette, the progestogen-only mini-pill. Her rationale was, given that my symptoms are worst around ovulation, stopping it altogether (as the mini-pill does) “might” work. Fair enough – now I’m retraining as a psychologist I’m more aware than ever of the “might” caveat that comes with any mood-related treatment. But I wasn’t convinced here. As I later found out, meta-studies suggest no evidence to support progesterone in the management of PMS. Yet so many women, like me, will be being offered this as a first-line treatment.

I went back with my own research and my GP happily sought advice from a gynaecologist on my behalf. In the past, GPs have suggested Vitamin B6 to me, which often said to help with PMS. However, the scant evidence there is makes very clear that any conclusions are limited by the low quality of trials.

There is a marked disconnect here. Particularly given that the leading experts there are on PMS (not many!) suggest that women with severe PMS may actually be “intolerant” to progesterone. If so, taking even more of it could logically make things worse.

Professor John Studd, an eminent consultant gynaecologist, has published research on PMS for 25 years. On the way PMS is treated, both as a condition and a phenomenon, he doesn’t mince his words. “People in the UK get a bad deal. Severe PMS is actually easy to treat and due to intolerance of progesterone in the last half of the cycle,” he booms down the phone. “In a 28-day cycle, the worst days are day 14 and 21. It’s all so obvious.”

What about sociocultural factors, though? The biomedical model cannot completely account for the complexity of the premenstrual experience.

I’ve lost count of the times I’ve heard the phrase 'I don’t want to put hormones in my body' over the years

“Absolutely not,” Studd says. “However, the endocrine [hormonal] elements of PMS and PMDD are, to someone who has spent their career studying it, very clear. Sadly, so many doctors – especially psychiatrists – are scared of hormones.”

This seems plausible. Anyone who works in women’s health will tell you that the research is limited. The same clinical psychologist who wished to remain off the record for this piece says it’s not hard to see the evidence of “endemic dismissal and ignorance” in the “chronic underfunding” of studies into PMS. The human reality is women suffering for years on end, unable to find release.

Studd sees “between eight and 10 women a day” with PMS in his London clinic. He says they’ve “been through everything – antidepressants, mood stabilisers, psychiatrists, you name it” and that the treatment he provides has “very few failures”. That treatment is cycle suppression by oestrogen gel and supplemental progesterone.

Women apply the gel every day or have the option of an implant. Then, to protect the womb lining, progesterone is taken for around a week. “If you’re sensitive to progesterone, some PMS symptoms will come back then,” Studd says. For women who still find these intolerable, a Mirena coil may be a better option than tablets as the progesterone is metabolised differently by the body by being released directly into the womb.

Online message boards like Mumsnet show many desperate women are willing to travel across the country and pay Studd’s high fees – in excess of around £600 – for a consultation at his private clinic in Marylebone, London. This kind of money makes it impossile for many; however, Studd does not “own” these treatments. They are approved for widespread use within the NHS – it's accessing them that it is the problem. Not a first-line treatment in current NICE guidelines, they’ll likely only be prescribed when women are referred to a gynaecologist.

Some women will wish to forego this kind of treatment altogether. I’ve lost count of the times I’ve heard the phrase “I don’t want to put hormones in my body” over the years. The health hierarchies we’re constantly bludgeoned with tell us that a “pure” body is a good body. This leads to an entrenched nervousness of hormones or “chemicals” –as if they’re not already intrinsic to who we are. Supplements like evening primrose oil, St. John’s Wort or agnus castus may be favoured but, again, trials show conflicting results. The evidence is not good enough.

Women who don’t want to take “proper” medications for their PMS may find themselves ostracised, though. “Biological, psychological, social and cultural factors all need to be considered in understanding someone’s difficulties and how to best support them,” says Dr. Melanie Rendall, a clinical psychologist within the Homerton University Hospital NHS Foundation Trust. “Treatment options, unfortunately, remain heavily influenced by a biological model which can run the risk of pathologising women’s distress.” Psychological therapies can hugely benefit women living with distressing symptoms, she says, but “too few are likely to have access to these”.

Even if they are referred, there can be obstacles. “The support that is needed may not fit into the remit of traditional mental health services. Referrals, in my experience, tend to be the last resort, when all medical avenues have been explored unsuccessfully.”

The takeaway message, it seems, is that women who suffer with PMS and want help must be both wary and tenacious

This can be an invalidating experience. Clare, a 33-year-old social worker from Essex, tells me how, after “trying every medical treatment” her GP offered her over the course of three years, she asked if it might be worth “having some therapy” to try and help with the very low moods she’d experience each month after ovulation. “Even though I tracked my periods with an app and knew the moods might be coming, I still couldn’t make sense of them when they did – it felt like an alien invasion,” Clare laughs. Her GP didn’t. “He sighed every time I came in and just didn’t seem able to understand that a problem with both physical and emotional aspects might respond to more than tablets”. Eventually, he referred Clare for talking therapy – “I can’t afford to go private” – and, a year on, she still suffers, but has “tools and ways of rationalising my thoughts” – something that’s “really, really helped”.

How do we ensure that women are able to easily access the treatment they need? “In my view, psychologists who specialise in the area of clinical health are best integrated into medical teams,” Rendall continues, “as they are increasingly in other services like weight management and gastroenterology – so women can receive a multi-disciplinary assessment, learning about the range of interventions that may help.” This holistic approach to women’s health makes perfect sense but is likely a way off.

So are better, more specific drugs. A research breakthrough was made in January, isolating parts of our chemistry that might lead to severe PMS for the first time. It supports the theory that problems with our cellular response (that “intolerance” Studd speaks of) to oestrogen and progesterone underlies severe PMS. The authors suggested potential for development of a more specific drug, triggering the inevitable “new pill could banish PMS!” headlines. But we should approach these – PMS was also recently linked to cat turds – with caution. When it comes to health research, rarely is anything as clear-cut as it’s packaged in the press. As Ben Goldacre doggedly reminds us, bad science is rife.

The takeaway message, it seems, is that women who suffer with PMS and want help must be both wary and tenacious. Our health system should support us in ways that reflect the reality of our lived experiences, but when it doesn’t, we need to be proactive.

The care that would benefit so many women – the very same treatment that women with enough cash are paying for on Harley Street – is available to be prescribed on the NHS. The difference is that when money is on the table the road to treatment is speedy and effective – and on the NHS, it only really materialises when the patient pursues it. But being informed on our rights, on current research and the treatments available to us and not being afraid to ask questions is how we prevent our bodies and minds being debased. It’s essential. So pursue we must. 

@eleanormorgan

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Illustration: Karolina Burdon
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