By Helen Juffs
My menopause story is long, and it isn’t pretty – it actually might scare and worry – so I want to start by saying there is good news too! It is SO much easier to get menopause support now. There are Facebook Groups, Instagram, or Podcasts targeted at an increasingly wide demographic of IT users. There are Menopause Cafés, menopause cosmetics, menopause clothing menopause exercise classes, menopause diets, menopause sleep aids, menopause documentaries and soap opera plots, I could go on.
The NHS is creaking under the increased demand for HRT now the decades of myths have been smashed, scientific evidence against HRT de-bunked, and big Pharma’s interest has been piqued which will lead to more money, more research, more options. We must be careful to slow the pendulum from swinging too far though, people are being overwhelmed with advice, and at risk of being sold snake oil because they are desperate to be heard by someone, anyone. The wealthy can find support in the numerous private clinics, but are just as much at risk of being given contrary advice as we wait for research to catch up with demand. One of the most annoying developments is people who haven’t ever had menopause symptoms starting to stand up and preach – when there should be nothing about us without us.
When I first started to experience brain fog, forgetfulness, and cognitive issues the last thing on my mind was menopause. It was 2014 – way before ‘the Davina documentary’ opened the floodgates to menopause knowledge. I was scared. I thought I had early onset dementia (dementia has run through three generations of my maternal line). I had no hot flushes, no changes in menstruation, I was ‘only’ 47, I’d just got married (legally – having been together ‘illegally’ for 24 years), my job demanded complex reasoning and mathematics. I ate well, slept well, took various supplements, did yoga twice a week. My wife is two years older than me and she seemed fine. It couldn’t be menopause. I put my head in the sand and weeks passed.
Typical peri-menopause hormone imbalances can actually start as early as 35 years of age, and can vary according to ethnicity. My wife is East African Asian so based on the little research available, along with Black people might have started her peri-menopause earlier than me as a Caucasian woman. Black people also have worse hot flushes, and Japanese people suffer the least symptoms. In fact, my wife started to have minor hormonal imbalances way after me and has had a fairly easy time, which is just as well, I don’t think our relationship could have stood both of us going through this. Gradually other symptoms piled in – 36 if I’m counting. I flooded, I itched, I ached, I cried, I raged, my teeth disintegrated, my skin erupted, my eyes dried up, I lost weight, I had pins and needles, acid reflux and carpal tunnel.
My tolerance to sounds, smells, and people in general disappeared, I was totally exhausted, thoroughly anxious, I thought I was going mad, I didn’t even know which side of the road to drive on some days. I just wanted to vanish. It was like puberty but in reverse. I later realised I was also grieving on a very biological level: the loss of fertility, the loss youth, the loss of physical prowess. However, I still had NO hot flushes (25% of menopausal people don’t have them). I even started to feel broody – and I’ve never wanted to have children of my own, ever. I went to the NHS for advice, and eventually the fifth GP prescribed Provera HRT (the old-fashioned horse urine sort) – but to their bafflement, my symptoms persisted cyclically.
Waiting months for an appointment at the menopause clinic, I started my own research and found out I was most likely progesterone intolerant which explains why every two weeks the menopause demons returned. Fortunately I had time on my hands, as after punching a wall at work (it was that or a colleague) I’d been signed off (the GP was going to write ‘stress’ on my sick note, but I insisted they instead write ‘menopause symptoms’).
Back then finding support was akin to being a detective – trying to secure access to secretive websites that promised support. Social media did not exist for the menopausal – it was too much of a taboo. I was fed up with sharing with friends and colleagues who could not or would not empathise. To be honest I was starting to bore myself with the ever-growing list of symptoms. (Fact: although lack of estrogen, progesterone and testosterone can cause a multitude of symptoms – some count over 70 now – symptoms can also be a sign of other underlying health conditions and so should always be checked out with a GP, making sure firstly they know the symptom might be due to the menopause). I eventually found an open forum online.
When I asked in the online ‘Menopause Group’ why weren’t they fly pasting posters and shouting from the rooftops about their experiences, one of them said they would ‘rather pluck their eyes out with a rusty spoon than admit to being old enough to be menopausal’. Even so, I thought at last somewhere I can be heard and supported. I hadn’t however, reckoned how cis, straight, white, and middleclass my new ‘tribe’ would be. It didn’t feel like a safe place to ‘come out’ so I stayed closeted, but I listened and I learned, absorbing the stories of all those people and how their lives were changed by hormone imbalance, and what solutions they found – both hormonal treatments as well as lifestyle changes.
Now at least my knowledge and confidence was growing. Being part of the LGBTQIA+ community wasn’t something I’d really thought of as needing different menopause support. I find that some people struggle to understand not feeling ‘safe’ – perhaps because they have never felt unsafe in such a minority. It is important to remember many LGBTQI+ people who are recently experiencing menopause now in their mid-fifties were born within memory of male-gay relationships being a criminal offence (only male-male because female-female relationships weren’t even considered a real thing). After de-criminalisation in 1967, we had to wait until the year 2000 for parity in the age of consent.
We have lived as adults through 15 years of Section 28 legislation which prohibited the public promotion of homosexuality. Only in 2014 could we marry legally. Many of us haven’t even had appropriate language to self-identify until recently. Bi-sexual was as adventurous as it got in the mainstream (and they were criticized for not being able to make up their minds). I didn’t feel comfortable in my assigned ‘Woman/Lesbian’ box but had no other choice. Androgenous felt possible but misunderstood. Life would have been different if we had access to language like ‘gender/sexual fluidity’, ‘queer’, ‘pan-sexual’ rather than ‘other’. Although the climate has changed in the UK homosexuality is still illegal in more than 60 countries – this affects where we can comfortably travel despite the Human Rights Act.
All this history underpins years of continually having to ‘come-out’, and frequent un-noticed micro-aggressions. When you are already not feeling yourself, tired and vulnerable the last thing you want to do is have to manage micro-aggressions, and people ‘trying’ to remember not to mis-gender you, or ask how your husband is, or make assumptions about your childbearing ability/desire, or simply say ‘gosh I’d never have known’ in what they think is a compliment. It’s widely accepted that the LGBTQIA+ community suffers from health inequalities and lower life expectancy than average. With underlying traumas and fear of discrimination (overt or covert) we are less likely to seek professional health advice.
I have realised as time has gone on that different parts of the community do need different support – we are not homogenous. At least we need to be recognised for our differences and not expected to fit the majority diagnosis and treatments which is rooted in gender bias and unreflective of sexuality and gender identities. Being Queer isn’t just a matter of having sex with someone of the same sex that you were designated at birth. Being queer, for me, is about being different, demonstrating that there should be less narrow-mindedness – because I strongly feel I’m not part of the status quo, that I don’t fit in with society’s prescribed ‘norms’.
This sometimes makes me feel ignored and erased and this layering of not being heard makes for a different and more challenging menopause experience. It is all too easy to be invisible as part of the LGBTQIA+ community. People make discriminatory comments easily because you are invisible to them. We are continually put in the position of having to decide to out ourselves or not – risking judgement from outside or from within, depending on confidence or not in the moment. Despite the change of climate in the UK, homo- and trans-phobic hate crimes remain a real threat. Don’t get me wrong being Queer is wonderful – I wouldn’t change it even if I could – I like being different – we all benefit from different perspectives – we just need society in general to get over themselves and get on board, to stop being afraid of difference.
In addition to supporting the LGBTQIA+ community experiencing menopause now, we need to plan and cater for the future. We are witnessing a revolution in awareness and presence of gender and sexual fluidity, especially in Gen-Z and Gen-Alpha. By the time these generations reach menopause the complexities of gender presentation will be enormous and we need to start discussions now to be able to support everyone equally. It is a crisis waiting to happen both culturally and medically for both cis and trans people.
Back to my menopause story… Luckily a kind, empathic soul in the online menopause group reached out to me privately and gently gave me the confidence to share the truth. By now, having continued with the lifestyle changes in terms of nutrition, exercise and reduced stress, and having found an HRT dosage which worked, my symptoms were settling. Supported by the menopause clinic it had taken me 12 months and 5 different HRT options to find balance. It was, in the end, the Menopause Clinic Nurse who hit on the golden solution for me (and ironically it wasn’t the gold standard body identical HRT solution everyone raves about – which is made from yam, but is now proving to be unhelpful with post menopause bleeding). I had also changed career, and got a dog. Round 1 – victory to Helen.
I realised through my experience not only do we need to plan for the future, we need to learn from the past. On reflection my mother and grandmother both suffered terribly from undiagnosed menopause symptoms. In the 1940’s My grandmother had a ‘surprise’ child in her early 40’s and was then on uppers and downers through her 50s for ‘mental health issues’. In the 1980’s my mother, following a misdiagnosis by her GP, had a ruptured ectopic pregnancy in her early 40’s and suffered (we thought) from brain damage following her near[1]death experience – forgetfulness, lack of cognition (to the point I had to take over keeping the family business accounts after I got home from school age 14), as well as rage, clumsiness etc etc. Sound familiar…? Neither were offered hormone replacement or advice. In my experience, many of the women who say ‘I just got on with it’ have a line of family, friends or colleagues standing behind them rolling their eyes and shaking their heads. They may not have understood why but they knew for sure something was wrong. So, when your mother says she didn’t have any symptoms delve a little deeper and wider, because your experience may mimic theirs.
A few years passed and more symptoms took me by surprise as I thought my battle with menopause symptoms was over. Ding, ding: Round 2 started with urinary infections, there were no issues with vagina atrophy/dryness – so I instead tried all sorts of over-the-counter preparations but with little relief. I sat on ice blocks for days at a time, and made excuses for not attending social events. Then, looking through my menopause notes I came upon topical estrogen being used not only for vaginal dryness/atrophy but for a Genito[1]urinary Syndrome of the Menopause (GSM). It isn’t only the vagina (which is primarily a tube for sex (and hopefully orgasm) – you don’t have to wonder too hard why this literally grabs attention in a ‘cis-male’ dominated world) but also the outer anatomical areas – the vulva (labia, clitoris etc), perineum, anus as well as the bladder and urethra that lose elasticity and simultaneously provide an unbearable sensation of being on fire. It is vital that we know and use the correct terminology as different body parts have different PH balances and need different treatments.
No-one tells you that hormones affect your poo and give you haemorrhoids. Taboo, taboo, taboo. Eventually, I put two and two together and duly got some ‘vaginal’ estrogen from the GP – I haven’t looked back. I will probably take this until I die. A whole year of topical estrogen is equivalent to ONE systemic estrogen tablet so it can be used by people who can’t take systemic HRT, and it can be taken without progesterone (hoorah, as it is evil stuff for me). Using the words ‘vaginal dryness/atrophy’ is so inaccurate and misleading – we must stop it.
This language prevents many people getting the treatment they need, not just in their 40s and 50s but even in to their 80s. I had long debates with the producers of the Davina documentary about this important differentiation but unfortunately my comments got lost on the cutting room floor as the ‘professionals’ used the term ‘vaginal dryness’, and it would be too confusing for the public if I said GSM. “TV is a blunt instrument”. However, following my suggestion on air that topical estrogen should be made available over the counter, it was! If you are 50+ you can get it from your pharmacist. And just now, three years later, Kate Muir has managed to get an article published in the Guardian all about GSM. Hoorah.
If anyone tells you that 12 months after you stop ovulating you will be post[1]menopausal and everything will definitely calm down – they don’t know what they are talking about! So many people continue to suffer as a consequence of reduced hormones because they are written off as post-menopausal when their symptoms could and should be addressed. Seems you are often either too young or too old for menopause symptoms – when actually our hormones can become unbalanced at any time. Life went on and Covid came along with my time to switch to continuous HRT – I was looking forward to ditching all sanitary products for good. But no, the Menopause ‘demons’ were gearing up for Round 3: continuous massive bleeding and cramps for weeks amongst other new symptoms. Back at the menopause clinic I tried tweaking my HRT dosage, underwent ultrasound scans and hysteroscopy twice, which detected fibroids and a bulky uterus, and finally an MRI (after further consultation with a wonderful private GP) which detected historic endometriosis – but no underlying cause for bleeding other than the HRT.
After 18 months I came off HRT for 9 months and developed hot flushes (finally I felt I was really bone fide menopausal person!) and debilitating joint pain and sporadic asthma– joy! Now I’m back on HRT – patches this time Round 3 continues… post-menopause me. Everyone can help shine a light on menopause symptoms – you don’t have to join the band wagon of ‘menopause coaches / nutritionists / advocates / champions. Many of us are experts by experience and if we all bring menopause (or hormonal imbalance if that lands better) into our social and work conversations – just as you would many other health issues – then this is the best way to break the taboo. I’ve lost count how many friends, acquaintances and clients I have gently suggested might want to consider their symptoms are due to hormonal imbalance. In fact, I have one client/friend with whom we play a game to see how many random conversation we can turn around to the menopause. We both regular start conversations with strangers and suddenly they are sharing their or their partner’s most intimate medical symptoms of menopause.
Knowledge is power. Within the menopause world there is too much gender and biological emphasis on ‘reproduction’ and ‘vagina’, and ‘loss of fertility’ – in the main, the menopause is so much more about aging well – including sexual health. Estrogen is the hormone which moisturizes the body, so it is far more than just ‘vaginal dryness’ – hence why atrophy can occur elsewhere in the body, and perhaps the reason there is a potential link to dementia. Until we address the anti-aging culture menopause will remain a taboo because it is an irrefutable sign of aging. The stigma of childless by choice underpins this restricted attitude too. We should celebrate the wisdom and freedom menopause and aging bring rather than feel compelled to hang on by the tips of our false nails and hair extensions, our nips and tucks.
Aging is a privilege and the menopause is part of the rite of passage. People have said to me being menopausal is like being given a sword of truth. It made me think it wasn’t actually a little boy who realized the Emperor had no clothes (in the fairytale) – it was someone menopausal. Perhaps this revelation is a contributory factor to why people leave their careers/jobs or even their relationships – not just because of over-whelming symptoms but because we just can’t keep their eyes shut and pretend any longer. We don’t have the ability to condone the growing toxic positivity and ensuing gas-lighting.
We couldn’t care less about fancy job titles, we just want to make a difference. Perhaps this is why people start working for themselves instead of staying constrained by workplace culture. Perhaps this is why they lack libido with their existing partners. Perhaps this is why they leave situations – to find themselves. Menopause lifts the scales from our eyes, reduces our inhibitions, and once our confidence is rebuilt we are a force to be reckoned with – no wonder society does’t want to talk about it. I’ve always felt drawn to fight for justice in this world – my own, and others seldom heard or seen. This has led to accusations of me being ‘confrontational’, ‘aggressive’, ‘combative’ or, more kindly ‘passionate’, ‘brave’, ‘supportive’.
Menopause has added another layer to my protective carapace Contemporary society brands such behaviour as uncivilized, not ‘grown up’ and so is able to dismiss and erase truthful insights as ‘mad’ mutterings. When issues affect ‘us’ more than ‘you’ the emotional toll in revealing ‘our’ pain, often to have it simply dismissed, cannot be taken calmly. Your ability to remain calm in such moments of sharing is a consequence of your privilege, NOT your objectivity. ‘You’ need to practice humility. Perhaps Gloria Steinem is right and the only way in the world as we know it if for “one day an army of grey-haired women may quietly take over the earth” but in the meantime I remain furious, fucking furious*
“The older I get, the more I see how women are described as having gone mad, when what they’ve actually become is knowledgeable and powerful and fucking furious.” – Sophie Heawood
[https://www.theguardian.com/commentisfree/ 2017/mar/22/do-mad-people[1]get-endometriosis-or-does-endo-make-you-mad]
Bio: Helen (she/her) is 56 years old, post-menopausal (though still experiencing symptoms), and identifies as queer Helen is a holistic health champion, practitioner and consultant, specialising in project development around equity in health and wellbeing. She also practices as a clinical reflexologist offering guidance around the menopause; and as an end of life doula. She developed her portfolio career as a result of the challenges and opportunities the menopause kindly brought. Helen had previously worked in senior management roles in the arts, and estate management.
Early in her menopause journey Helen contributed to: ‘The Silent Archive – Spoken Testimonies of the Menopause’ in the University of Leicester’s East Midlands Oral History Archive; and ‘The NHS Menopause Decision Aid’ with the Winton Centre for Risk and Evidence Communication at Cambridge University (unpublished).
Prior to Covid She shared her experiences and knowledge of menopause with Fine Stripe Productions, and as a result her story is included in documentary maker Kate Muir’s book ‘Everything you need to know about the Menopause – but were afraid to ask’; and was interviewed by Davina McCall for Channel 4’s Sex Myths and the Menopause. In 2023-25 she is a partner in a Birmingham and Solihull Menopause in the Workplace project as an expert by experience for BVSC (Birmingham Voluntary Services Council). The Project was funded by the VCSE Health and Wellbeing Fund, part of a partnership programme between Department of Health & Social Care, NHS England, and UK Health Security Agency.
LGBTQIA+ Resources (woefully few compared to mainstream resources)
- Mission — Queer / LGBTQIA+ Menopause (queermenopause.com)
- Out and Wild Festival – online menopause café
- Wales LGBTQIA+ menopause policy
- What Fresh Hell is This – Heather Corinna book
- Facebook group: – All-Gender Peri/Menopause Support
- Dr Angela Wright – https://spicedpearhealth.co.uk/about/ – GP menopause and sexuality expert
- The Knowledge – most inclusive mainstream book on menopause – Dr Ari
