Menopause, medical misogyny and mainstream media

Who can we trust to provide neuro-affirming menopausal health care and support?

Closing remark from BBC Panorama documentary

For almost a week now, I have been a seething wreck over the BBC Panorama documentary ‘The Menopause Industry Uncovered’ aired on British national TV on 30th September 2024. Actually, it’s now more than a week - I have been in turmoil over what to write to express my disdain and rage. As an autistic, words just cannot convey the emotions I experience, nor impart my deep-felt inner entanglement, stress and communicative paralysis that such public medical gaslighting stirs within.

Whilst I have thought of nothing but what to write, my words have not been able to flow. Since my Dad’s death, I have been unable to sit at my writing desk. Until now. I am used to my words choking me from within, but I simply cannot let this go, and until I can push something out, my childhood mutism will try to reign. Such is the regressive nature of my autistic perimenopause. I can not bear losing my skills and feeling incapable; or worse, not using my long hard-fought voice to speak up to offer a neurodivergent perspective on the ongoing sham that is globally inequitable menopause healthcare.

And so back to Panorama. The premise of the documentary was to draw public attention to false advertising and unsubstantiated claims around gimmicky items and supplements sold under the illusion of being beneficial in the relief and treatment of menopause symptoms. Fine. Autistics are often fans of facts, statistics, data, research, science and busting myths. Evidence-based research findings can offer feelings of safety, reassurance and validation; and conversely, frustration, since often research findings will leave us with more questions than answers…

What then followed on screen was nothing short of an exposé and a damning indictment of Dr Louise Newson’s private Newson Health clinics, including interviews of former staff and patients raising concerns around the prescribing of Estradiol (oestrogen patches as hormone replacement therapy/ menopausal hormone treatment - HRT/MHT) above the UK’s upper limit guideline of 100mcg. Predictably there was a lot of discussion around cancer risk and cancer diagnoses, since insufficient progesterone prescribed alongside oestrogen can thicken the endometrial lining which can increase risk of cancer. This should be something all women are made aware of before deciding to proceed with HRT treatment.

Of the 45,000 or so patients of these clinics, I think the production team consulted with 15, interviewed around three of them on camera, yet made no reference to the high proportion of patients who have been forced to seek private menopause health care due to overall failings, lack of knowledge and routine medical gaslighting of the National Health Service (NHS - the UK’s public health system). Not exactly the broad, balanced and impartial reporting the BBC alludes to.

Panorama featured an anonymised former doctor who had been employed at Newson Health: “Dr Newson’s prescribing philosophy will cause women harm”. They made a plea to her to “pause, accept help, reflect and collaborate”. That sounds reasonable, but Dr Newson’s peers also need to be willing to learn from her expertise.

Pressing questions were neither asked nor answered during the show. Questions such as what amount of oestrogen are individual women absorbing transdermally? We know that women respond differently to different brands, although most evidence is anecdotal, due to a lack of research. What are the next steps in treating menopausal women who are not alleviated of their symptoms at doses of 100mcg? Why isn’t there research into efficacy of treatment at doses above 100mcg?

Women have always been underrepresented in medical research. I think I read somewhere once that medical research trials have traditionally been conducted on males as there is no risk of pregnancy and so pharmaceutical companies can not be made to face litigation regarding harm to babies in utero. But eliminating women from medical research will never advance medical knowledge for female patients.

A question viewers of Panorama have been asking is why do 45,000 UK-based women even need to see a menopause specialist? Usually, it is because generalists are not skilled at working with menopausal women, and lack confidence in prescribing and titrating HRT. People are seeking private specialist menopause care out of desperation due to the medical misogyny of the NHS. The BBC reinforced this message, and scaremongering women with associating cancer with HRT.

The concluding monologue was poignant:

“Whether it’s deciding to take higher doses of HRT or to buy over-the-counter remedies, women need the right information. The menopause can be a tough enough time without added uncertainty. What all women deserve is evidence-based treatment and the best possible menopause care.”

Kirsty Wark, Panorama

Indeed. Yet the overall story was one of terrorising rather than supporting women. Yes, there are risks to HRT, but women need to make informed decisions regarding whether, in their individual case and at that point in time, the potential benefits outweigh the risks.

I am not alone in thinking this. On her Instagram, and shared on Women’s Health Magazine website, Davina McCall (British TV presenter of documentaries ‘Sex, Myths and the Menopause’ in 2021 and ‘Sex, Mind and the Menopause’ in 2022) felt that the thirty minute Panorama show was “designed to put us off HRT”, that it was a backwards step for midlife women collectively, and that personally HRT had been a lifeline for her. Whilst Davina agreed that the safeguarding of women's health is a priority through regulating and titrating HRT doses to individuals, Dr Louise Newson had been the first person that made her realise it was safe to take HRT. In turn, Davina made millions more of us aware that it could be safe too for us to receive appropriate healthcare to support our menopausal transition. Putting women off HRT may well be putting many women at unnecessary risk and setting us back decades in progress about women’s health.

Here in Aotearoa New Zealand, private women’s health clinic GP Dr Samantha Newman aka femaleGP has stated on social media “The right hormone at the right time can be life changing”.

As a layperson here, I am not going to comment on any medical doses nor medical advice, but instead will stay in my lane: what does all this mean for the autistic perimenopausal population?

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Who can help us?

This is a worrying aspect, since Panorama interviewed a range of professors, patients and doctors and made no reference to cultural diversity nor neurodivergence. As I have previously written, there is a massive data void when it comes to evidence-based research into how best to support and treat autistic women through our menopausal transitions. Added to this is the postcode lottery when finding a suitable doctor.

Some general rules I follow when choosing a doctor:

• They are neuro-affirming in their clinical approach.

• They have an interest (rarely a specialism, due to limitations in medical training) in neurodivergent patients and/or themselves identify as ND.

• They are open minded in learning about autism, and autistic perimenopause.

• They are respectful and responsive to autistic communication preferences, and information presentation preferences such as providing visuals to explain new concepts.

• Telehealth (phone, email, video calls, secure online medical portals) can be very beneficial as we don’t need to use executive functioning to travel, find childcare, or navigate a hospital/clinic. Telehealth enables hands-off check ups. This can also reduce triggers around medical trauma.

• I feel safe in their company, validated and I look forward to appointments. They are supportive, validating and provide co-regulation through their expertise and approach.

• They trust that I provide an equally valid role in the co-partnership within the patient-doctor dynamic. This is important because autistics often have little regard to social hierarchy.

• I don’t feel pressurised to make on-the-spot decisions. They allow me time to process new information, encourage my own research, and encourage follow ups (informal or otherwise) to get back to them with a decision.

• They give me time to reel off my list of notes and issues that I want addressed in a single appointment without rushing me or interrupting, since doing so can trigger my mutism and rejection sensitivity dydohoria (RSD), putting me in an anxious state and unable to feel validated, heard or engaged.

• They are respectful of interruptions from my family and understand/empathise with my dynamics as an autistic mother to autistic children. In person appointments allow me to bring my children as needed without judgement.

In a previous post I wrote about my experience of not even making it past a medical receptionist with my children in tow, and have not returned to this clinic since:

Being highly anxious around the lack of pace in reaching empirical findings, I have been assured by Dr Rachel Moseley that there is autism-specific menopause research in progress. We do not yet have best practice guidelines nor strategies to give autistics the best chance of survival, but I am hopeful that the momentum of academic interest and public awareness is picking up.

Whilst menopause is not considered a medical condition nor a health risk in and of itself, it still is an impactful life stage that can cause exceptional vulnerability to the mental health and suicidality risk of autistics. Surely this should be already known to experts such as those interviewed on Panorama, and be considered a potential mental health crisis point for the collective non-male autistic population.

Autistic people are being excluded from the general discourse around perimenopause. Given that our hypersensitive nervous systems are so prone to causing mood changes throughout the reproductive hormonal decades of our lives, it should be medically explored as to whether or not we respond well to a higher than 100mcg upper limit of oestrogen using HRT. We are often willing guinea pigs in our own treatment plans, because we can feel within ourselves the enormous risk we may be exposed to by not exploring medical options to alleviate our menopause symptoms, and optimise our mental health.

Autistic women are routinely gaslit by our doctors, “Your labs look great” is a phrase I know well, even when I feel on the verge of death. Our communication differences can make it difficult to reach out for second, third and fourth opinions. Indeed, even when working alongside a doctor, we can experience what Brady et al. (2024) have coined “the quadruple empathy problem”: namely where the doctor and autistic patient have differing social communication skills and don’t empathise with the other neurotype as well as their own, compounded by the inability to recognise autistic (peri)menopause.

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Titration, titration, titration

Experts may disagree over how much is the right dose of HRT for an individual. But as midlife autistic women are at three times higher risk of death from suicide, how conservative can we afford to be with dosing? When we are already teetering on the side of considering taking our own lives, is it not disingenuous and immoral to cut off oestrogen patches at 100mcg? How can we ethically explore this now, with women who need life preserving oestrogen to continue with optimised cognitive functioning and mood regulation?

We are not using HRT for superficial gains, nor as an elixir of youth. This isn’t a case of wanting our skin to look younger, nor to jump on a bandwagon not wanting to miss out. Our regressions are real and our mental health is especially vulnerable. We just want to stay alive, and many of us rely on buffering our fluctuating hormones in midlife to do just that.

We know that autistic women may be more likely to experience menopausal symptoms at a younger age than the general population (Brady et al. 2024), so what is known of our varying oestrogen requirements at an earlier age than neurotypicals? Nothing, there is no such published research.

There are known cultural and racial/ethnographic differences in the symptoms experienced by women in menopausal transition (BBC Sounds podcasts - one and two). Do we know their differing requirements for oestrogen? Or if different hormone ratios are more suitable to some groups of women than others? No, I am not aware of any such nuanced data. I would love to be corrected on this, please do contact me with any such evidence-based results.

Professor Temple Grandin is an autistic researcher, author and advocate. She is well known for stating that autistic people can respond differently to medication doses as we are so hypersensitive to our environments, including our medications. For this reason, I generally prefer to start using new medications on a lower than typical dose. Grandin suggests a thirty-fourth, sixteenth, eighth, half or a quarter. I am currently doing best on a half of my SSRI tablet daily. A quarter and my panic spikes, a whole tablet and I am devoid of all emotion - my GP has said this is indicative of too high a dose.

Seeing as we know how sensitive autistic women are to hormonal/reproductive/menopausal depression, (Meno-D - A rating scale to detect depression in menopause) can we consider that our brains are susceptible to the spikes and troughs of cyclical hormonal production?

We experience PMDD at a higher rate than neurotypicals, and emotion and mood regulation are lifelong challenges for us. Surely we need and deserve all the support and health care available to us to manage these challenging and risky symptoms.

We are more likely to experience suicidal ideation, and less able to regulate those thoughts and feelings, whilst being less able to control such impulses. We are truly at a great risk, and without appropriate menopausal awareness, supportive and knoweldgable health practitioners, and evidence-based strategies and titration. Talk about kicking us when we are down. It’s a wonder any of us make it beyond perimenopause with this epic failing of the systems negligent of our diverse needs.

For black, indigenous and people of colour this risk is surely higher in terms of difficulty accessing adequate healthcare.

Autistics with learning/intellectual disabilities, and/or non-speaking, or co-occuring conditions that limit communication face even greater obstacles to appropriate menopause care.

Autistic people with chronic health conditions often report that their symptoms worsen in midlife. We are more likely to be unemployed, making access to adequate medical care out of reach for many.

Our challenges are multi-faceted, complex and grossly neglected. We are being failed by society at large, including by scaremongering around HRT presented in the mainstream media.

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Are we over-medicalising a normal stage of life? Or are we under-treating a known mental health crisis?

Neurotypicals make sweeping statements such as, “Don’t frighten younger women, menopause isn’t all bad” and “I got through it without HRT, you should all just get on with it like we had to”. We are advised to ask our mothers, aunties and female elders how the menopause transition was for them. For women experiencing intergenerational trauma of undiagnosed autism, this may not feel like a psychologically safe line of enquiry.

Surely we want younger generations to feel informed, educated, knowledgable growing into their own perimenopause. We should be building up systems and structures to support them so they can thrive in midlife. We should not be deferring on to them all the shit we can’t cope with. They will have enough to deal with in climate change catastrophes - must we set them up to fail?

The world seems determined to kick women when we are down. Are suicidal midlife women being sacrificed purely to uphold the patriarchal medically misogynistic systems of today? Perimenopausal people need trustworthy neuro-affirming expert care, but when neurotypical women can’t get adequate menopausal health care, how do autistics even stand a chance?

It is not okay to terrorise women about HRT and cancer risks on mainstream media channels. I hope that it does not result in fear and avoidance of HRT for those who need it, but the general feeling is that this is a major setback in an already misrepresented medical field.