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6 October 2022

“I would not leave the house”: how PMS sufferers are getting a raw deal from doctors

Many women report severe pre-menstrual symptoms, but medical professionals are not equipped to help.

By Zoë Grünewald

When Sasha Baker was 11 years old, they began experiencing periods so difficult that they would make themselves vomit so they could stay home from school. Periods were “painful, heavy and messy”, they say, which will be familiar to many women, trans men, and non-binary people, like Baker, who menstruate.

Pre-menstrual syndrome (PMS) refers to various symptoms – irritability, breast tenderness, anxiety – in the weeks leading up to menstruation. There are more than 150 of these and around 75 per cent of women experience at least one of these during and around their period, the most commonly reported being those that impact mood. For some sufferers, PMS can be severely debilitating.

Baker suffers from a severe form of PMS called pre-menstrual dysphoric disorder (PMDD) which causes intense mood changes and an exacerbated experience of other symptoms. PMDD is little understood, but treatment often involves the use of hormonal contraceptives.

Baker was eventually prescribed a contraceptive implant. They were told it would calm their symptoms, but the effect was the opposite. “It was a terrible decision,” says the assistant podcast producer. “I sometimes wonder if my PMDD was triggered by [the implant]. It at least made it a lot worse.”

Over the following years doctors prescribed Baker numerous hormonal contraceptives in the hope that their symptoms would lessen, but that didn’t work out for Baker: “the pain, mental health symptoms and the brain fog just got worse and worse and longer and longer. I’d feel awful for probably two weeks before my period would start, and then maybe three of four days afterwards. That’s most of the month gone. It was severely debilitating; I would not leave the house.”

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Nick Panay is a consultant gynaecologist at Queen Charlotte’s & Chelsea and Chelsea & Westminster Hospitals and the chairman of the National Association for Premenstrual Syndromes. He has been working on menstrual and hormonal disorders for years. He says that it has been “one of his life’s endeavours” to try and put pre-menstrual disorders “on the map”.  “I think, over the years, women have had a bit of raw deal as far as this is concerned,” he says.

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Baker’s story is not uncommon, says Panay. Anywhere between 5 and 8 per cent of women suffer from PMDD, and “moderate to severe PMS” is reported by around 30 per cent of women, according to the National Association for Premenstrual Syndromes.

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Panay uses the term “severe PMS” interchangeably with PMDD, describing it as being a condition “where the symptoms are severe enough to interfere with a person’s ability to function personally, socially, and professionally”. He explains that there is “no magic test” for diagnosis, but practitioners look for “symptoms which occur almost exclusively pre-menstrually and then are significantly relieved by menstruation”.

The cause of severe PMS is not proven, but Panay believes it may well be genetic. There are also some non-genetic risk factors for those who may be predisposed to severe PMS. These include a history of trauma or stress within the family, he says. Incidence of severe PMS also tends to increase for women in their thirties.

Severe PMS needs to be “taken very seriously”, says Panay. Over 70 per cent of people who’ve suffered from PMDD have had suicidal thoughts, according to research by the International Association for Premenstrual Disorders, and about 30 per cent attempt suicide. “There are some women who’ve been diagnosed with bipolar disorder because the cyclicity [of the period] has been missed,” Panay adds.

Baker says that, in the past, they too have contemplated ending their life. “If I have to deal with this every period until I go through natural menopause, what’s the point of being alive?”

Eve Muir, a domestic abuse specialist and freelance writer, has had pre-menstrual exacerbation (PME) since her periods began. PME is when menstruation worsens existing chronic mental health conditions. Muir’s periods worsened her symptoms of complex post-traumatic stress disorder (CPTSD), depression and anxiety.

“I can go into deep states of depression, anxiety attacks, panic attacks, disassociation and brain fog,” she explains. “I call in sick from work and I’m bed bound. I can’t find any joy in life and can’t motivate myself. There will be days on end of me wallowing in bed.” In the worst-case scenario she can feel suicidal, she says.

Encounters with medical professionals have only worsened her experience. Almost as soon as she started menstruating when she was around 13 she was “pushed to get on the pill” by her school and sexual health clinic “because that was really the only advice that was given to teenagers at the time”. But, as for Baker, the prescription only exacerbated her condition. When Muir came off the pill her mental health “crashed” every month. When she sought advice from her doctor, they gave her a few, limited options, all of which involved traditional medicine, from which she explained she felt “really disenfranchised” as a result of previous traumatic experiences she’d had with doctors. She was advised to “go on the pill, go on antidepressants, have an induced menopause or have a hysterectomy”, but felt that these were “not an option” for her.

Muir’s experience is not uncommon. Baker also wishes that they had been offered alternatives to hormonal contraception sooner, including hormonal suppression, which they now receive, and the option of a hysterectomy. “I think doctors really could be doing a lot more,” Baker says. For a long time “no one I had a spoken to, including a consultant gynaecologist, had heard of PMDD”.

For people suffering from severe PMS, the lack of research and appropriate diagnosis affects their access to treatment. Though much of Panay’s work centres around hormonal treatments, he emphasises that “it takes more than one approach to achieve a good outcome”. A number of treatments are often needed, and sometimes contraceptive treatments, such as the pill, will not work. “Some pill options actually make things worse rather than better,” Panay explains. In part this is due to the “wrong types of progesterone that can have PMS-type side effects”, and also because it’s “often used with a hormone-free interval”, which doesn’t alleviate symptoms.

Panay lists a number of potential treatments for sufferers, from “hormone therapies, psychological and psychiatric approaches”, to “complementary therapies” such as including agnus castus, a herbal capsule, and vitamin supplements. Panay also cites antidepressants that can be used specifically during the luteal phase of the period, or the second half of a menstrual cycle.

Periods have been historically under-researched. According to a 2020 paper from the US National Library of Medicine, a search using the PubMed engine for the term “menstrual blood” yielded “one publication during 1941–1950, followed by a steady increase over time to more than 400 publications in the last decade. For reference, PubMed searches of ‘peripheral blood’ and ‘semen’ yielded almost 100,000 and 15,000 publications, respectively, over the past decade.” A search for “menstruation” yielded about 4,000 publications in the past decade.

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For many, the lack of research in this area is part of the reason many PMS sufferers aren’t able to access appropriate treatment. Camilla Rostvik, an honorary fellow at the University of Aberdeen and part of the Menstruation Research Network, explains that PMS and PMDD have been “historically under-researched and only defined in medical contexts since the 1950s”.

While the research done in the past by “pioneers” of PMS undoubtedly did some good in defining the issue, she says, it made a “vague and individual problem” generalisable across a larger population. “Some people of course were helped by having a diagnosis, but generalising PMS is not helpful. I think it’s a symptom of the wider under-funding and under-research of the entire menstrual cycle. People are hungry for answers, and the fact that things might be more complex and not generalisable does not square with the limited resources available to both happy and unhappy menstruators – nor researchers.”

In July the government published its Women’s Health Strategy. It noted that women report their experiences of periods being invalidated by medical professionals. “We heard concerns that women had not been listened to in instances where pain is the main symptom – for example, being told that heavy and painful periods are ‘normal’ or that the woman will ‘grow out of them’,” it says. “Women also told us about speaking to doctors on multiple occasions over many months or years before receiving a diagnosis.”

That matches Rostvik’s words: many experts still believe that period symptoms can be generalised across the population. As a result many women find it hard to find someone who will take seriously that their experience of symptoms may be abnormal and require additional treatment.

Panay sees this lack of knowledge as one barrier women face in their access to care. “You can’t expect every single GP to necessarily have the tools to manage this condition, but within every practice there should be at least one or two GPs that can see women with these sorts of problems.”

He also explains that funding is a major issue: “We need investment into resources, clinics, training and research to basically provide adequate care, support and research within this area.”

For Baker and Muir, offering a variety of treatments, with full disclosure about their side effects, is vital. “I think there could be more caution with recommending [the pill]. I don’t want to say that to [stop] people who do want those interventions, I just think people need more information,” Baker explains.

Muir extolls the benefits of holistic therapies. She now treats her PME with regular acupuncture, which she describes as “supportive, positive and affirming”.

The Women’s Health Strategy does seem to take seriously the need for menstrual conditions to be better understood. It pledges to ensure that “women and girls have an awareness of the different gynaecological conditions (such as endometriosis and polycystic ovary syndrome) and less well-known conditions (such as adenomyosis), and an understanding of what a normal menstrual cycle should look like for them. Women and girls know where, when and how to seek help for menstrual or gynaecological symptoms, and what support and care they can expect.” The strategy also aims to give women and girls access to “high-quality, personalised care” for the management of menstrual problems.

Panay feels positively about the strategy. “I’m hoping, hopefully not unrealistically, that the Women’s Health Strategy will make a difference,” he says. “But we do need resources behind it.”

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This article has been amended to correct the fact that Baker was not prescribed a contraceptive implant after their first doctor’s visit, and also to clarify that they wished they had been offered alternatives to hormonal contraception sooner.

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