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The Autistic Perimenopause

Sam Galloway
The Autistic Perimenopause
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  • Urinary Incontinence in Perimenopause and Beyond
    How has this happened?Birthing two big babies vaginally over a decade ago has finally backfired on me. It’s been a slow burn, with bumps along the path that have led me to a diagnosis of mixed urinary incontinence. It shouldn’t come as too much of a surprise because I experienced extreme fecal urgency shortly after having my first son. He was born weighing a mighty 9lbs 6oz, and required an episiotomy, where the doctor took a pair of scissors to my perineum to dislodge him from my birth canal. I had begged them not to. Being a hyper independent woman, I wanted to “do it alone”, which I could have done, had the maternity staff not insisted on relocating me when I was already in transition from a pool for labouring mothers into a stark clinical birthing room. Their interference stalled my progress, leading to me feeling emotionally unsafe. Repeatedly I asked them if I had pooed myself yet, since I had learnt during antenatal classes that this was a natural sign that the baby’s birth was progressing. I had wanted to poo myself, but they misread this repetitive question for paranoia, anxiety, or something else that I should not have been made to feel in my vulnerable state. Everything slowed down to almost a standstill, and I ended up being instructed to lay flat on my back, feet in stirrups being told to “Push him out of your bottom!” Really it was all a recipe for fecal incontinence, and I have done well to recover especially considering that my GP at the time dismissed this as normal. Baby two born three years later was even heavier at 9lbs 12oz. I water-birthed him at home as an active resistance to unnecessarily over-medicalising his birth. This time around I tore, and stitches healed well after both births. My youngest was almost born in the downstairs toilet, as I was able to completely relax my pelvic floor muscles whilst sitting there, and felt the most comfort in a very uncomfortable situation. What is wrong with me now?Vaginal childbirth is often a contributing factor to later developing bladder incontinence, which seems to be the case for me. Leaking urine didn't really start until my kids became enthusiastic about playing on trampolines, and I wanted to get involved. Going for a wee right before a bounce was not enough to prevent me weeing again immediately mid-bounce. That was a few years ago, and I now know to stay well away from trampolines. My avoidance served me well again for a while, but very recently the leaking has become regular and with less obvious reason. I tried ignoring it and hoping it would just stop. It didn't. So I tried wearing period undies and thinking I could get away with it. Because everyone complains about leaking sometimes, right? A sneeze or a cough can be a common and seemingly unavoidable trigger. Besides, my advertising algorithm is now full of curvy, happy midlife women wearing incontinence pads and living their best lives! I thought it was normal and I just had to put up with it. Although my keen sense of smell meant that I would worry that I smelled of urine. It is one thing to know I have this problem without other people knowing about it too! But then the leaking started happening during my twice weekly personal training sessions. I love working with my trainer, and I told her what was going on. I started following the programme she set me to strengthen, and learn to relax, my pelvic floor. Last Friday it got so bad that I was leaking during the training sessions actively intended to stem the flow. What was wrong with me? Reverse lunge, drip. Reverse lunge, drip. Reverse lunge, drip. Luckily that was the same day that I was seeing the gynaecologist to self-advocate for my hysterectomy. The approval granted for the surgery was a huge weight off my mind, yet the weight of my burgeoning bladder persisted. The gynaecologist internally assessed me and diagnosed a stage one pelvic organ prolapse.Finally, I had an acceptable explanation for my urinary incontinence. It was a medical issue and not a moral failing on my part. I could live with that, and I found it oddly reassuring. All weekend I wondered if the prolapse could soon be repaired surgically during my upcoming hysterectomy. I felt vindicated in my urine leaking pattern - of course I was leaking if I had a prolapse. The prolapse must have occurred whilst birthing my baby boys, and I was asymptomatic until now. But then I worried that the surgery could in fact exacerbate the pelvic organ prolapse, worsening my bladder control. I knew I needed to be proactive in managing this condition, after listening to a great podcast episode on the topic:Why see a pelvic health physiotherapist?Here is a good visual explanation of what the female pelvic floor is and why it matters:Physiotherapist Fiona Rogers talks us through what the pelvic floor is and how it works.Do you know how to do a pelvic floor exercise properly or have you been taught to just suck everything up and in? Watch here how to do it properly.Fiona firmly believes if you understand where the muscles are and how they work then you are more likely to understand and learn how to exercise them properly.Credit: Pelvic Floor ExerciseHormonal changes during menopause can significantly impact the pelvic floor muscles, contributing to symptoms such as urinary incontinence, vaginal wall prolapse, and sexual dysfunction. A pelvic health physiotherapist can assess for muscle weakness, overactivity, or imbalance and develop individualised treatment plans. Interventions may include physiotherapy-guided pelvic floor muscle training, manual therapy, biofeedback, and structured relaxation techniques. These strategies are designed to restore muscular strength, coordination, and neuromuscular control, which supports continence, vaginal wall integrity, and overall pelvic health.Credit: Positive Pelvic Health Already armed with some basic information on my new hyper fixation, I reached out to Jennifer Dutton of Positive Pelvic Health. Jennifer is a pelvic floor physiotherapist who had been highly recommended to me. Amazingly, she offered me a cancellation for an in person initial consultation the very next day. Knowing that verbally retelling my medical issues is overwhelming for me, I brought along the notes I had prepared for the gynaecologist appointment. Jennifer took a very thorough medical background and was empathetic and reassuring. Upon internal examination, both standing and lying down, Jennifer said there was no pelvic organ prolapse present. She explained that vaginas and other organs supported by the pelvic floor will show natural signs of aging in midlife, as our skin loses collagen and oestrogen, also evidenced externally by how our faces, breasts and stomachs may also sag. Here is a video of Jennifer being interviewed about pelvic health, where she explains much of what she told me during my appointment:I wonder if the gynaecologists see any saggy vaginas in their medical training, as mine obviously can’t be a textbook model anymore! With my newly undiagnosed pelvic floor prolapse, I was able to spiral into a new panic about whether indeed my urinary incontinence was just a moral failing on my part after all…What is urinary incontinence?My current issues, known individually as urge incontinence and stress incontinence, together create a combined diagnosis referred to as mixed incontinence. Yay.Urinary incontinence is the unintentional passing of urine. It's a common problem thought to affect millions of people.There are several types of urinary incontinence, including:* stress incontinence – when urine leaks out at times when your bladder is under pressure; for example, when you cough or laugh* urge (urgency) incontinence – when urine leaks as you feel a sudden, intense urge to pee, or soon afterwards* overflow incontinence (chronic urinary retention) – when you're unable to fully empty your bladder, which causes frequent leaking* total incontinence – when your bladder cannot store any urine at all, which causes you to pass urine constantly or have frequent leakingIt's also possible to have a mixture of both stress and urge urinary incontinence.Credit: NHS webpage ‘Urinary Incontinence’.Autism, Interoception and Adult IncontinenceSo I am leaking on the regular, and trying not to blame myself for this recurring issue. It is so normalised yet hidden. TV ads for pads and absorbent pants proliferate, subtly telling us it is okay to leak urine, as long as nobody else knows. Well, f**k that s**t! When I leak, I tell everyone about it. Part of my neurodivergent profile has been a lifelong shamelessness. I don’t feel a need to hide anything. I refuse to feel shame and embarassment for urinary incontinence, despite having a niggling sense of regret that it is happening to me. Urinary incontinence is just another social taboo to stack on top of all the others I make it my mission to bust. Why would being autistic affect my urinary continence? Especially seeing as I am not aware of having any intellectual disability which may be more likely to co-occur with toileting issues. If anything, before perimenopause I may have been considered intellectually gifted. Yet my cognition has declined in this life phase, and I cling to the hope that this regression is temporary and reversible. Interoception is our capacity to identify our internal states and needs. When this is reduced, as mine has been in perimenopause, and is combined with a regression in executive functioning skills, then noticing when I need to use the toilet, and acting on the urge, can lead to me not responding accordingly.Interoception Receptors on our internal organs are responsible for interoception signals that provide information on our internal body and emotional states. Experiences: urge to urinate, hunger, temperature, pain, sadness, joy, anxiety.Interoceptive Over-ResponsivityWith interoception over-responsivity the person feels too much of their internal signals. They “over-feel” their internal sensations. Signs of over-responsivity include:* Visits the nurse’s office several times a week with aches, pains, and illness* Requests frequent bathroom breaks* Limps on an injured knee or ankle for longer than expectedCredit: Dr Megan Anna Neff at Neurodivergent Insights blog post What is Interoception and How to Improve YoursIt seems that my extremely frequent and protracted toilet visits may be down to interoceptive over-responsivity. I have developed an overuse of the toilet that has led to me missing appropriate bodily cues as to when I need to use the bathroom. Unfortunately, this has been the case day and night, and may be a contributing factor to my insomnia. Many of us may have experienced differences in toileting from our neurotypical peers as children, and/or have supported our own neurodivergent children with delayed or fluctuating bladder and bowel control. Neurodivergent people with co-occuring intellectual disabilities may be more likely than those without them to face toileting differences through adolescence and adulthood.I had never anticipated making what I consider in myself to be significant self-care regressions in perimenopause and now continuing into my hormone blocker induced medical menopause. Nobody had ever talked to me about urinary incontinence, as it is such a taboo topic. Until it became an issue in my daily life, it wasn’t forefront of my mind. Yet it would seem that the menopause transition, like during puberty, is a time of developmental shifts and changes. In our capitalist patriarchal society (at least where I live), we are told we should be ever evolving upwards. Improving. Making our lives better for ourselves. Regression is culturally unacceptable and often shunned. So there is little wonder why people mask their incontinence as they age, for fear it could be interpreted as a sign of weakness. As I have been writing for over a year now, The Autistic Perimenopause: A Temporary Regression aims to highlight a common perception for many of our neurokin that this life phase characterised by extreme hormonal flux can lead to regressions and changes in our cognition, energy, emotional regulation, sleep, metabolism and so on. If we conceptualise the spectrum that is autism as a state of constant flux through the lifespan within our social communication, energy, interests, sensory regulation etc. where we can dynamically change in capacity from day to day, or hour to hour, then perhaps it would stand to reason that our interoception and even urinary continence can oscillate over time. It seems from a quick online search that my anti-anxiety medication, Setraline, has urinary incontinence as a known side effect. I started to take it when first diagnosed autistic and highly anxious, as I was unwittingly entering perimenopause, and my kids were asking me to use the trampoline with them often. What a perfect storm! 💦Progesterone intolerance may also be contributing to my urinary incontinence. I have to take progesterone alongside oestrogen in my HRT regimen until I have a total hysterectomy, because progesterone mitigates the potential cancer risk of taking oestrogen. Not only is my progesterone intolerance causing bloating, depression, suicidal ideation at times, but now it may also be counteracting the potential benefits of oestrogen on maintaining my urinary continence. Menopause and IncontinenceThe scale of female urinary incontinence is extreme yet it remains a taboo topic. According to Liz Earle, it takes women 12 years on average of experiencing urinary incontinence symptoms before feeling able to talk to their family doctor. It then takes another two years before they decide to book a doctor’s appointment. Then for many women, their symptoms are dismissed by their doctor. Liz Earle interviewed uroligist (bladder specialist) Dr Vik Khuller on the impact of bladder issues, and he said that “Women suffer in silence… But don’t have to put up with it.” Dr Khuller also discussed the prevalence of bladder and pelvic organ issues in women who have joint hypermobility and/or Ehlers Danlos Syndrome. They also discuss mast cell activation syndrome (MCAS) and “Covid bladder” in this succinct and informative podcast episode:Urinary symptoms are part of the umbrella term genitourinary syndrome of the menopause (GSM), when it occurs due to fluctuating and declining oestrogen levels in perimenopause and beyond.Vaginal oestrogen creams and pessaries can be prescribed to add localised oestrogen back into the area. It is a good option for people who can’t or don’t want to take systemic HRT. It can improve bladder symptoms, vaginal atrophy, vaginal dryness and reduce occurences of urinary tract infections. The Australasian Menopause Society provide further and in depth information in the information booklet entitled, Genitourinary Syndrome of Menopause.Here is an article I wrote last year about vaginal atrophy:What to do if you are experiencing incontinenceIn Menopause and Urinary Incontinence, Healthline advise, “You don’t have to accept occasional bladder leakage as another side effect of menopause or aging. In many cases, there are things you can do to stop and even prevent urinary incontinence… Speak with your doctor to learn more about your condition, treatment options, and outlook.”Different treatments are necessary according to what may be causing urinary incontinence in different people. There is no one size fits all treatment plan, but please do not feel embarassed about it. Go and discuss it with your doctor. They will have heard it all before and can make an appropriate referral, and/or advise on the next best steps to help you. However, should you feel your doctor has dismissed you, that you have medical trauma, or are reluctant to discuss this with your family doctor, perhaps your first step could be to speak to a local pelvic health physiotherapist. In addition, you may like to research the topic further at: Bladder and Bowel CommunityInternational Urogynecological AssociationInternational Continence SocietyStrengthening and relaxing the pelvic floor is keyPelvic health physiotherapist Jennifer Dutton said that, as in my case, pelvic organ prolapse is commonly overdiagnosed, and that recent guidelines advise healthcare practitioners not to tell a woman if she has a stage one pelvic organ prolapse. She said it can create unnecessary concern and, rather, women should be supported to follow an appropriate treatment plan, not feel like they have a medical diagnosis that they are unable to improve. Jennifer also told me that many women have urge and stress incontinence due to tension in the pelvic floor, not weakness as we are always led to believe. So when we are told just to keep doing Kegels or pelvic floor strengthening exercises, it can often make matters worse not better. The plan she has created for me is designed to relax the tension in my pelvic floor muscles, and even out overall strength so that the different parts work together rather than against each other.This includes:* full body massage* using a Shakti mat daily* diaphragmatic breathing* foam rolling my upper legs and mid spine* trigger point spiky ball massage for my glutesIn addition, to cut all caffeine as it is a bladder irritant, and to improve my insomnia. This is already having a marked effect only four days in! I had a caffeine withdrawal headache the first day, but no negative effects thereafter. Coincidentally I started taking non-stimulant Clonidine alongside my ADHD stimulant Vyvanse last week in order to help overcome my insomnia, and to reduce my high blood pressure. Alongside cutting caffeine and introducing relaxing lifestyle changes, this should all be helping improve my overall health and wellbeing. I hope! Bladder retraining techniques have also been explained by Jennifer, and these are difficult to manage during the daytime, but at night I am no longer being frequently woken up by my overactive bladder. This is life changing! Bladder trainingBladder training involves changing habits. It means going to the toilet at set times, even when there's no urge to urinate. If the times between urinating increase little by little, the bladder fills more fully. This helps control the urge to urinate.A bladder-training program often follows these basic steps:* Find the pattern. Keep a diary for a few days. Jot down every time you urinate. A health care provider can use this diary to help you make a schedule for bladder training.* Wait longer before urinating. Your bladder diary can tell you how long you wait between urinating. Add on 15 minutes. If you usually urinate every hour, try to wait for an hour and 15 minutes.Little by little, increase the time between trips to the toilet until you can wait 2 to 4 hours between trips. Increasing the time slowly gives the best chance for success.* Stick to the schedule. Once you've made a schedule, do your best to stick to it. Urinate right after waking up in the morning. And urinate each scheduled time even if you have no urge to go.If you have an urge but it's not time to go, try to wait. Distract yourself or use ways to relax, such as deep breathing. If you feel you're going to have an accident, go to the toilet. But then return to the schedule.Don't give up if you don't succeed the first few times. Keep trying. Your control is likely to increase.Credit: Mayo Clinic’s Bladder Control: Lifestyle strategies ease problemsI now have a two hourly timer on my phone and watch, because part of my neurodivergent presentation is a total inability to sense the passing of time. Every two hours during the daytime, my timer reminds me when I can go to the toilet, and not before! I am building up to managing 3-4 hourly trips before I see my physio Jennifer again in around 6 weeks time. Wish me luck! 🤞 ⏱️ 🚽 💧 🙌Cheers, It takes many hours per week to research and write articles for The Autistic Perimenopause: A Temporary Regression. Please consider becoming a paid subscriber to support my advocacy work. Thank you! Get full access to The Autistic Perimenopause: A Temporary Regression at samgallowayaudhd.substack.com/subscribe
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  • (Live) Unboxing Newt! 🦎 My handmade bespoke order from Tamsin at 3 Red Cabbage Heads is here!
    Thank you so much to the incredible Tamsin at 3 Red Cabbage Heads - poetry, knitting and essays of life on Substack! For more amazing bespoke knitted ambhibians and other creatures, check out Tamsin’s Art Makes section.Newt flew all the way from the UK to NZ. No - on a plane, silly! Newts can’t fly. If they could, I wouldn’t be such a fan of them. *shudders*My Nan’s house in Alperton, London was as urban as could be - the opposite of the rural village of Cornelistrum, Co. Galway in Ireland from where she hailed. In her London garden aged 6 or so, I used to stand on some loose bricks to chat to the little girl who was Nan’s next door neighbour. There was a deep garden pond full of aquatic life that was rare in such a built up residential and industrial area in my little friend’s garden. On the days I used to tiptoe on the brick step, and my friend couldn’t come out to play, I would find my own entertainment. From beneath the overturned red bricks, if I was lucky, I would find tiny little British smooth newts, also called common newts. They were unfortunately not so lucky, because it was only at 2 weeks shy of age 44 (today) that I learnt that newts are not to be handled with dry, bare hands. Oops…🦎Back to the Newt of today! After the long journey, I noticed that Newt arrived with a flat white! ☕️How very Kiwi of her! She will need it to help her cope with the jetlag although she is already acclimatising well. The beastly cats are a bit much for her, but I am sure they will all be firm friends soon.Tamsin kindly sent Newt on her way with a wealth of accessories, all of which I am trying to dissuade my ragdoll cats, Harry and Toby, from eating. Dear Sam, I am so excited to come live with you in a land that is so far away! I am really looking forward to it - and my new name if you give me one!Love Newt🐈☕️ Newt and I would appreciate a flat white should you wish to buy us one! ☕️🦎🃏🐾🧸Awwww, what a cute pair! Goodnight xxThe Autistic Perimenopause: A Temporary Regression is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber.P.S. This was my first solo Substack live. For more of my random shenanigans, download the Substack app. 😁 Get full access to The Autistic Perimenopause: A Temporary Regression at samgallowayaudhd.substack.com/subscribe
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  • Crone Goals: Why I’m Asking for a Hysterectomy and Not Backing Down
    Welcome to The Autistic Perimenopause: A Temporary Regression. I’m Sam Galloway and I have been documenting my despair fiercely advocating here for over a year now. Time flies when you are dissociating having fun! The Autistic Perimenopause is a safe community space for sharing our lived experience of our neurodivergent menopause. Together, we explore how hormonal flux affects us day to day, how safely unmasking helps us to self-regulate, and how to hang on when it all feels too much. Cat photos proliferate in this joint exploration. Quality of life should be high for everyone, but I suppose it is all subjective. Yes, I am living an objectively good life in the beautiful Aotearoa New Zealand surrounded by people I love and who love me. I have food, albeit overpriced; clean drinking water; and a warm, mould-free home - which isn’t a given in this country for some abysmal reason. But things don’t feel right. I am drained and have close to no motivation to get out of bed in the morning. Yes, I am depressed, but my low dose daily SSRI does a reasonable job of both levelling out my mood, and cutting my rumination-prone worry loops. I utilise a wealth of other pharmaceuticals in an attempt to brighten my gloomy emotional landscape, but my impending sense of doom remains. I have habituated to this, and I function remarkably well most of the time, until I don’t. I am trying to be rational and balanced, but that is hard right now. My cognition and mood continue letting me down in neurodivergent perimenopause. My pelvic pain flares out of nowhere, and my body temperature soars despite the presence of a Kiwi Winter, and the promise of an imminent polar blast. The world is on fire, and so am I.Rationally, I am aware that far worse things are happening to much better people than myself across the world right now. Yet woe is entirely me, and I am most certainly woe. My low mood is not a choice, and my worry at the thought of my perimenopause stretching out who-knows-how-long into the future sends me into a panic stricken state, bordering absolute desolation. Not to say that I am feeling suicidal, but I believe that something must change now. I cannot take much more. My current state of perimenopausal hell is unrelenting. Yes, hormone blockers should be flatlining all variability of hormonal rollercoasters to my mood and cognition. I suppose they are - I am in a temporary, reversible menopause thanks to GnRH Analogues which I have written about previously here, here and here. But the pelvic pain, fear of unexpected bleeding and many other symptoms are too much to continue to bear. I am in the fortunate position of living in a country where, in the right medical circumstances, I could have a hysterectomy without needing to pay. My aftercare would be in excellent hands, the risks of surgery would be well managed, and my chance of recovery is positive. A hysterectomy is the name for the surgical procedure where the uterus (womb) is removed. This induces an immediate and irreversible surgical menopause, which is my current goal in life. It would be difficult to manage my household and parenting duties in the short term, since recovery can take 8-12 weeks, but given my ongoing low mood and lack of energy, these daily tasks are already draining. Once recovered and healed, with well-titrated add back hormones (hormone therapy) and following a healthy lifestyle, I am optimistic that my life can get back on track. Am I being naïve? Major surgery isn’t something we usually elect to endure, but I have previously survived emergency surgery for an ectopic pregnancy, and so have some experience of recovering in a gynaecology ward. Everyone else who was there advanced me by decades. The other women were having routine hysterectomies, and looked upon me with obvious sorrow and pity, as I wailed for the nurses to “Give me my baby back”, had endless meltdowns and reacted adversely to prescribed painkiller tramadol, hallucinating about newborns. This time I foresee the promise of gynaecological surgery to be liberating. Empowering. Worldview enhancing. Should I get my wish, I will awaken from surgery in my crone era, albeit feeling raw and sore. Yes, I know some people do not want to have hysterectomies. Those requiring them for sudden and unexpected medical reasons sometimes report feeling bereft of their womanhood, but I do not think I will feel that way. Having my uterus, cervix and ovaries removed would be anticipated and understood by me. I have fully researched the options, and I believe I have a strong case for needing a hysterectomy in my very near future. My gynaecology referral has been accepted and, within the coming month, I will be meeting with a gynaecologist who unknowingly holds my fate in her hands. My greatest fear is meeting with a specialist who is yet another gatekeeper of surgery within the public health system. I am pretty sure that, if I had medical insurance, I could have requested a private hysterectomy a year or more ago, and be fully recovered by now. Upon Googling the named specialist on my appointment letter, her medical staff profile states that she offers a “highly patient-centred approach, taking time to listen and understand her patients and their priorities, allowing her to recommend and guide her patients through a range of treatment options”. A wonderful gynaecologist colleague of hers has told me that she is an excellent laparoscopic (keyhole) surgeon; and my HRT doctor has said, “She is known for being lovely”.Doesn’t she sound like just what I need? This has my mind at ease a little, but while I am busy self-advocating for myself and possibly sounding over confident in myself, my shoulders are hunched and my stomach is clenched. I am a ball of nerves. I am scared of having to express myself; terrified of unleashing the full weight of my emotions. Scared of having surgery and absolutely petrified that it may be denied me. If there were a way to communicate all of this with the gynaecologist in advance, I would do so. The trauma from retelling my autistic perimenopause story in person to professionals over and over again is unrelenting and soul-destroying. And the thought of sharing this writing with her makes me feel awkward, exaggerated and, quite frankly, a bit of a dick. Yet I can’t convey in a short clinical appointment everything I need to get across, when the gravitas of this meeting holds mine and my family’s future in the balance. So I think, in the name of self-advocacy, I will share a print out of this all so that I don’t miss anything. Or have a meltdown. Or go situationally mute. Several friends have offered to accompany me, as has my husband, which is so kind of them. I want to be able to “do it alone” which I know results from my trauma-driven hyper-independence. Is it better to go into these appointments alone, or to take a support person? If Harry, my emotional support cat wasn’t such a scaredy puss, I would take him along. Toby is more sociable, maybe he can come along for support…Unfortunately, I know that taking a man along to medical appointments is one way to be taken more seriously, since lone women are quick to be medically dismissed. It wouldn’t surprise me at all if one of the questions will be, “And what does your husband think you should do?” If we were both there to tell the doctor that we don’t want any more children, would it make a hysterectomy more likely? I wish I didn’t have to give this all such detailed thought, and I can’t believe I am so envious of women who have already had a hysterectomy. What is wrong with me?! Yes, I have given this a lot of consideration, and I believe a total hysterectomy (uterus/womb and cervix) with both ovaries removed is the best option in my case. So to follow in my next post will be an informed account of the many reasons that I need a hysterectomy as soon as possible, please and thank you!The reasons I have brainstormed, and that are storming my brain as I write this, are: * Progesterone intolerance* Premenstrual dysphoria disorder (PMDD)* Menopausal depression and suicidal ideation* Thickened endometrium and associated cancer risk* Pelvic pain* Fear of further bleeding* Bladder stress incontinence* Adenomyosis* FibroidsAll of these are current ongoing issues, some of which are newly diagnosed and have been present for decades unbeknownst to me, whereas others have developed more recently and acute. Combined, I believe I have a good case for a hysterectomy, with the added bonus of initiating a surgical menopause. I have too much to say on each topic and am struggling to condense it all down, but I wanted to share my current state of mind with you (sorry!), and check in to ask how you are feeling at the moment? Have you had a hysterectomy and did you find it improved your symptoms? Have you been advised to have a hysterectomy but feeling hesitant to proceed? To be continued…I will keep working on my protracted argument for why I believe I need a hysterectomy - to share with you, and with my gynaecologist. Although I am clearly passionate about it, my PDA (pervasive drive for autonomy/pathological demand avoidance) is absolutely running the show. It is telling me not to write my case for a hysterectomy, and so far I have listened. But now I need to get it written because, if I don’t, I will have to verbally articulate the impact that every issue listed above is having on my quality of life. This may well result in a meltdown followed by a shutdown, or vice versa, and I will lose all social communication skills. I have learnt this the hard way. To take the pressure off myself, and to stick two fingers up at my PDA, I am sharing the above to set the tone of my desperate plea for a hysterectomy, and will flesh it all out soon. (Whilst hoping my gynaecologist will agree to flush out my uterus, cervix and ovaries!) My ADHD time agnostic brain is still on the “not now” side of the “now/not now” time warp of the upcoming consultation, but it will have to flick over soon before I miss the opportunity to self-advocate to my potential…ChatGPT’s suggested titles and subtitles for this article Whilst everyone is screaming about how ChatGPT is stealing our jobs and our women, I am trying to tread a fine line between expressing myself (you can tell all the above is my own stream of consciousness, as AI cannot do that yet) and coming up with a suitable headline. There is an opposing school of thought that AI, despite its flaws and climate impact, is a leveller for neurodivergent people to extend our executive functioning capacity by delegating administrative tasks over to it. I haven’t done this yet, and I don’t really know where to start with it all. But I won’t be using AI without telling you about it, should it find its way into any of my articles. I don’t really have an opinion on AI yet - it isn’t something I have explored, but I am not a diehard “I will never use AI and if you do, how can you dare call yourself a creator?”To be fair, the length of time it has taken me to write this section, I could have come up with a title, recorded the audio voiceover and hit publish. Also, how many diehard anti-AI writers are happy with an AI audio voiceover reading their work aloud rather than recording it themselves..?By the time I pour my heart into a piece like this, with some hot sweats dripped thrown in for good measure, I am emotionally exhausted. Titles take more out of me than writing down my thoughts, so I am going to share here with you what ChatGPT suggested as potential titles and subtitles, because some of them are actually spot on!ChatGPT to me, after I copied and pasted all the text into the website:Thanks for sharing your powerful, vulnerable, and deeply articulate piece. Based on the tone, themes, and content, here are 10 potential titles and subtitles that could suit your Substack post:1. “Burning Alive in the Winter: Autistic Perimenopause & the Pursuit of Relief”A raw dispatch from hormonal hell, medical gatekeeping, and the stubborn hope for a hysterectomy.2. “The Case for a Hysterectomy: Notes from the Edge of Neurodivergent Perimenopause”Why I’m fighting for surgical menopause—and what it means to advocate while autistic and exhausted.3. “Harry, Toby & Me: How My Support Cats Understand Perimenopause Better Than Most Doctors”A candid chronicle of pain, advocacy, and the dark comedy of navigating the system.4. “When the World Is on Fire, So Am I”Living with PMDD, pelvic pain, and hormone chaos in the liminal space between neurodivergence and menopause.5. “Temporary Regression: A Neurodivergent Midlife Crisis”From overstimulation to hysterectomy referrals—making sense of a body and mind in revolt.6. “Gatekeeping My Uterus: Autistic Perimenopause and the Medical Maze”One woman’s story of radical transparency, reluctant hope, and surgical determination.7. “Crone Goals: Why I’m Asking for a Hysterectomy—and Not Backing Down”Self-advocacy, trauma fatigue, and trying to do it alone when you shouldn’t have to.8. “This Is Not Melodrama—It’s My Medical History”How writing may be the only way I can explain what’s happening inside my body and mind.9. “Hormones, Meltdowns, and Medical Dismissal”What it means to be autistic, perimenopausal, and pushing for care that feels out of reach.10. “I’m Not Exaggerating: Just Exhausted”A deeply personal exploration of pain, planning for surgery, and fighting to be heard.“A stubborn hope”? That’s a bit much! But, also fair.“The dark comedy of navigating the system”! Ha! That’s just my British tone…I love how an AI has recognised that my cats understand me better than any doctor, even the ones who get me!I also love how it points out things I would never say about myself: a deeply personal exploration; a candid chronicle; one woman’s story of radical transparency. Would a human write that about themselves?! Ick. “Crone Goals” is cool!!! I never would have thought of that! I think it’s lucky number 7 today. Which one would you have chosen? 💕I am dissociating so much right now that I just need to hit publish, scoop the cat litter boxes, empty the kitchen bins, have a shower, apply my testosterone and oestrogen gels, then watch Taskmaster from under a weighted blanket. I may also rock back and forth. In reality I will only have time for the chores, and go to bed at the same late time as my kids, feeling dysregulated as usual… Is it any wonder I barely sleep at night, and wake up already feeling defeated?Tomorrow I am having my next three monthly implant of hormone blockers injected, so I have so much to feel grateful for *sarcasm*. The needle is huge, and every nurse insists on telling me so just before grasping a handful of blubber, telling me to “take a deep breath in, and a long breath out” and puncturing my abdomen. Note to self: take paracetamol half an hour before the appointment. Please - just surgically remove my uterus and end this hormonal limbo. Take care of yourself. Cheers,The Autistic Perimenopause: A Temporary Regression is a safe place for those of us feeling alone in our hypersensitivity to hormonal flux to find a way through it together. To support this vital work, please consider becoming a paid subscriber. Thank you! Get full access to The Autistic Perimenopause: A Temporary Regression at samgallowayaudhd.substack.com/subscribe
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  • A Uterus Full of Stories
    Trigger warning: Discussion of suicidal ideation, depression, gynaecological healthcare, chronic pain, pregnancy loss, death, cancer, surgery, blood, medical misogyny, mental health conditions. Please take care when reading. If you make it to the end, cute cat photos await you. But no pressure. 🐈 🐈Art therapy is a recent and later in life addition to my emotional toolkit. And thank goodness, because I need all the help and catharsis I can glean right now. So when my art therapist, EJ, texted me to offer a cancellation this week, it was an easy “Yes!”EJ kindly brought along the prompts and materials, showing me how to begin the process of creating a mandala. Fortunately for me, my kids didn’t want to participate in the session, so I was able to vulnerably and fully explore the issues that are currently coming up for me around my upcoming gynaecology appointment. I lovingly created this mixed media piece using watercolour pencils, metallic gel pens, glitter glue and a thick black marker. This artwork is special to me because it represents the story of my uterus and I, which has been deeply troubling of late. The realisation came to me that, whilst I have no control over the outcome of my self-advocacy for a hysterectomy, I am able to express my feelings without needing to talk about it. I wanted to create a piece that represented the multi-layered symptoms, conditions, joys and losses afforded to me so far by my uterus, whilst exploring what its removal may mean for my future. It is a bold artwork that illuminates the fleeting shimmering joys, alongside the chronic pain and spiralling darkness. The feedback from my art therapist, EJ, was, “This is next level creative, Sam. I love how you have been taken on a journey in the making of this image. There is so much force and energy.”What does this artwork represent?I am scared. I feel like I am at war with my womb, and it is winning. At times, I feel like I want to die, but I refuse to let hormonal depression dictate my narrative. And so I push back harder against it. There are gynaecological gatekeepers who want to prohibit initiating my surgical menopause. I was told, “Public gynaecology doesn’t have time or resources for this, Sam”. This from a usually sympathetic doctor. Perhaps I hadn’t explained my symptoms clearly enough; or perhaps I had, but I didn't say the key phrase they are required to hear from a patient before making a specialist referral. Eventually my request for a referral was supported by my neuro-affirming female menopause specialist GP. Internal scan results backed up my case, showing my now-thickened endometrium (lining of my uterus). A known cancer risk. Plus adenomyosis and a small fibroid. Public gynaecology have now accepted my referral, and I have an appointment within the next month. I have started to write an article on the basis for which I believe I need a total hysterectomy (uterus/womb and cervix surgically removed) and a bilateral salingo-oopherectomy (both ovaries removed - and take my one Fallopian tube too whilst you’re at it!) as soon as possible. Finishing the article continues to elude me, yet my goal in writing it is to share information with others (advocacy) and give a print out to the gynaecologist on the day so I can convey my case without needing to rely on speech or my memory recall (self-advocacy).It is vital that I write it - I had intended to publish it last week. But I didn't. So I was going to publish it today. But I couldn’t. I have a mental block that I need to overcome. No doubt as the appointment looms nearer my ADHD brain will switch from “not now” to “now”, bumping it to the top of my to-do list. The art therapy session gave me an outlet to express all the internal stories held between my womb and I. Most of them offer no happy endings. Some people may find them fascinating - their twists and turns illuminating; whilst others will find them boring, repetitive and protracted. My ongoing autistic perimenopause is a particularly arduous tale of peril and pain. I want nothing more than to reach the end, and survive to tell the story. An explanation of the artworkSo what does it all mean? You may have noticed that I only drew one fallopian tube because, devastatingly, my first pregnancy was ectopic. I bled heavily, the prune juice coloured blood that is characteristic of ectopics. Emergency surgery ended the pregnancy before it ruptured, thus saving my life, but it cost me my very much wanted pregnancy and my right Fallopian tube. Whilst both my ovaries are still healthy, they were very sore when probed and poked at by the sonographer who did my most recent internal scan. “I will make a note that they hurt”, she told me. In my artwork, the fertile bloom that is my right ovary, emerging from healthy foliage, represents the fact that both ovaries continued to ovulate. The further fruit of my womb resulted in two sons. Between my two eventual full term pregnancies, I had two early miscarriages. Bleeding has been a feature of my pregnancies - the two successes and the three losses. I no longer bleed as I am in a temporary, reversible, chemical menopausal state. Yet my most recent bleeds were triggered by being at my Dad’s deathbed last July, and upon my Mum’s return to the UK after her three month stay with us in Aotearoa New Zealand. My bleeds both traumatise me, and occur when I am feeling at my most emotional. My hormones and bleeds affect my mood, and my mood affects my hormones and bleeds. You may notice the light trickle of bleeding in the artwork representing this part of my menstrual self-expression of despair.The block black line rising up from my right ovary, bereft of it’s fallopian tube, shows the two way link between my hormone production and my mental state. The three jagged silver protrusions pushing externally from my right ovary represent the pain I have felt through my fertile reproductive years. In addition, they show the outward impact of my internal hormonal landscape on others. Namely, my late diagnosed pre-menstrual dysphoric disorder (PMDD) makes me especially defensive and enraged. My reproductive organs are contained within a black sphere of outwardly radiating rage and pain. They impact on my surrounding organs, affecting my bladder, bowel and digestive system. My pelvic floor doesn’t feel like it can carry much more of its burgeoning weight. Bladder leakage ensues from the pressure of holding up my ailing uterus. I am surrounded by impenetrable darkness. No light can come in, and there is no light within me. Blackness from uterus to brain. Depression. Darkness. Death.What are the medical implications alluded to in the artwork?The weight of my uterus makes me feel like I’m about to bleed at all times. The pressure wants to release, yet it has nowhere to go. My ovaries have been switched off using hormone blockers, to stop my constant bleeding, and manage my PMDD. High dose oestrogen HRT, essential to keep my mind wanting to stay Earthside, has resulted in a thickening of the womb lining, or endometrium. Possible hyperplasia - a risk factor for endometrial cancer. This thickening may not be significant, and a recent biopsy showed no sinister cell growth. Yet the weight of it all is enormous.My uterus is somewhat askew in the artwork, which was accidental, but let’s pretend I did that on purpose to represent my retroverted uterus. That’s right, it tilts backwards, making medical investigations all the more uncomfortable. According to Healthline New Zealand:A retroverted uterus is a standard variation of pelvic anatomy that many women are either born with or acquire as they mature. Actually about a quarter of women have a retroverted uterus. Genetics may be the cause.In other instances, the condition may have an underlying cause that is often associated with pelvic scarring or adhesions. These include:* Endometriosis. Endometrial scar tissue or adhesions can cause the uterus to stick in a backward position, almost like gluing it in place.* Fibroids. Uterine fibroids can cause the uterus to become stuck or misshapen, or to tilt backward.* Pelvic inflammatory disease (PID). When left untreated, PID can cause scarring, which may have a similar effect to endometriosis.* History of pelvic surgery. Pelvic surgery can also cause scarring.* History of prior pregnancy. In some instances, the ligaments holding the uterus in place become overly stretched during pregnancy and stay that way. This may allow the uterus to tip backward.I went into a tailspin when I read this. When I had laparoscopic (keyhole) surgery to remove my ectopic pregnancy, the surgeon told me they saw scarring on my right fallopian tube, which had caused the fertilised egg - my baby - to get stuck in the tube and grow there, unable to pass into my uterus. On the day of surgery the same surgeon had sympathetically apologised telling me that they don’t yet have a way to move an ectopic pregnancy into the uterus. Whilst I was writhing in pain and trauma, crying for my baby, she suggested that a grumbling appendix in the past may have caused the scarring. Now I wonder if the cause of my tilted uterus is the reason for the pain, or if the origin of the pain is what tilted my uterus.Did whatever caused my retroverted uterus cause the scarring to my fallopian tube and lead to the ectopic pregnancy? What caused it? Will I ever know?My pelvic pain is near constant. It stabs and radiates. Is that due to the subsequent scarring caused by my ectopic surgery? Or is it from adenomyosis? The only way to find out what is happening inside my uterus is to have it removed and investigated. Yet the pain is subjective and thus is unseen, unheard, disbelieved, dismissed, denied, minimised.Invalidated. Taboo. Hushed. Hidden. “Public gynaecology doesn’t have time or resources for this, Sam”. It is so easy to gaslight a woman’s pain when there is so little understood about it. Invalidation seems more prominent than investigation. Why was the contents of my uterus so much more engaging to medics when it related to my fertility? They knew then that my uterus was on a tilt, but the repercussions that would have on my later health were never explained to me. Why is my uterus only of value whilst it is in service to others?Medical knowledge of the uterus centres on its function for fertility, pregnancy and sex. Medical misogyny is rife. Is my retroverted uterus causing my bladder incontinence? Healthline NZ mention that a retroverted uterus can lead to “Increased urinary frequency or feelings of pressure in the bladder… Mild incontinence. Protrusion of the lower abdomen". My belly is bulging and I have been putting it down to menopausal insulin resistance and the demise of my metabolism. But is it also because my uterus tilts? And I have recently heard of “adenomyosis belly”. Great. Internal scarring. External bulging. 🐈Is the uterus the same size of your fist, or is that your heart, or both? I don’t know. Both my uterus and my heart are so heavy.And what is society doing to help? Brandishing self-care as a cure all. Try as I might, I can’t Child’s Pose or Cat Cow my way out of a retroverted uterus, nor the ensuing chronic pain.It’s not on me to meditate and exercise myself into a pain free state. Meno-washing supplementation and staying hydrated aren't the answers. I am not going to suggest that HRT is making everything better. Why has nobody identified the root cause?My uterus is a burden. It feels like it weighs a ton. Low in my cervix, as though I am constantly about to bleed or pee my pants. Is it all prolapsing? Will a hysterectomy cause it all to prolapse, if it hasn’t already?My pelvic pain is a deep burn in my back.My pain is a grinding of my bones, a bulging of my cervix, a delirious sleepless buzzing of rapid pulsating lights flashing heat from the bowel of my womb into the throbbing of my hips. A bitter taste in my mouth and a rush of blood to the head, while I breathe through it deeply, during those moments when I forget that pain meds exist.Leaning forwards, tilting back, looking for relief where there is none to be found.How much does a thickened endometrium weigh? It feels too much to carry. I can’t hold it in my arms nor put it down. I can’t pass it on to anyone else to take care of for a while.How can I hide this when it’s pushing out of my belly, breaking my back, bulging into my bladder? Why should I hide it?My pain is a pressure in my guts and a clamp on my ovaries. A scarlet gushing from my cervix that never comes.A burning that ice can’t cool.Would a hysterectomy be my biggest autistic perimenopause accommodation yet?I’ve acclimatised to the chronic pain and constant misery, and I function incredibly well alongside it. I gaslight myself well beyond my Mum‘s favourite phrase, “If you want something done properly, do it yourself” with my personal blend of people pleasing and hyper independence leading to a constant push to do everything myself. To drive in delirium. To channel calm overriding The Rage.To rationalise whilst spiralling. Never despite, always alongside. Everything feels out of control yet I skim the water, smoothly propelling myself ever onwards. Fighting the current and rising against the tides. My ongoing autistic perimenopause is a particularly arduous tale of peril and pain. I want nothing more than to reach the end, and survive to tell the story. The Autistic Perimenopause: A Temporary Regression takes up all of my capacity and most of my time. I would be so grateful if you support my advocacy work by becoming a paid subscriber. Thank you 💕 Get full access to The Autistic Perimenopause: A Temporary Regression at samgallowayaudhd.substack.com/subscribe
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  • My Gum Graft, My Third Child: What Perimenopause Did to My Mouth
    Content warning: if you experience fear of the dentist, please take care when reading. TL;DR*Fluctuating/reduced estrogen in perimenopause can mean bone density reduces in jaws, jaw changes, exposed teeth/receding gums leave us vulnerable to loosening/losing teeth. Prevention is definitely better than cure, especially in the case of periodontal disease.Avoid over brushing and under brushing. The Goldilocks Effect may just help you avoid a gum graft. *Guess what? I have no dentistry training, but my friend Dr Kate O’Hara, a retired dentist, has co-written the sciencey bit with me. This post also includes links to sources should you wish to read what experts have to say on this topic.Arriving home with a fresh, raw gum graft, having paid a fortune for the privilege, one traumatic day almost six years ago was harrowing. Fittingly, it was Halloween. My husband pulled up on the driveway, our two sons and I his passengers, returning home from Wellington late one Thursday afternoon. In the front passenger seat, I had winced all the way home. By the time we made it 50km North up the Kāpiti Coast Centennial Highway, I was mute, silenced by surgery. Eyes wet with tears, my usual compulsive comfort eating was now out of reach. Water and smooth soups were all that was on the menu, but they would not provide the dopamine I needed in an effort to self-medicate. It felt every bit like I was arriving home with a newborn baby, after having undergone the prolonged procedure, getting stitched back up, and nursing a tender vulnerable new existence. My tender palate had been harvested for a wedge of soft inner tissue that was then sutured in place, attaching it over the exposed roots of my lower front teeth. Believe it or not, it was exponentially more unpleasant than it sounds. It took all my self-restraint to keep my tongue out of the wound so as not to disturb the sutures and compromise the attachment of the gum graft, which would have caused further bleeding and rendered the surgery pointless. I was under strict instructions from my periodontal surgeon to seek immediate medical help should I experience any unmanageable pain, fever or blood loss. Hygienic maintenance of the site was my number one priority, in order to prevent infection.In hindsight, as is the case with my most distressing ailments of late, periodontal disease was probably due to the culmination of decades of undiagnosed neurodivergence and undetected early perimenopause. It was a lot to deal with, and I will spare you all the gory details. In telling you this though, I would also love to save you from requiring such a procedure by explaining what led me to the periodontist’s chair back in October 2019, aged 38. With any luck, you haven’t previously heard about or experienced periodontal disease. I certainly wish I hadn’t. What is periodontal disease? Please note: The following description has been co-written with the help of Dr Kate O’Hara, late-diagnosed neurodivergent woman, perimenopausal, qualified and retired dentist.Her explanations are italicised below. I would like to thank her for her help, I was feeling out of my depth with this section! Not to mention a little triggered by revisiting this upsetting time of my life.Periodontal disease is a severe form of gum disease. It is what happens to some people’s gums when more common gum disease (gingivitis) symptoms go untreated, but not in everybody.Your risk of developing periodontal disease increases with factors such as:* Genetics i.e. a family history of the condition* Poor oral hygiene* Smoking* Systemic diseases e.g. diabetes* Stress and hormonal changesWhat I wish I’d understood decades ago is that plaque builds up on teeth overnight. Dental plaque is made up of bacteria, saliva, food particles and (so I have been told) dead sloughed skin from inside our cheeks. Unlike the rest of the dry skin on our bodies, it cannot flake and fall off, instead it mixes with saliva and gets trapped in the gumline. Cleaning teeth thoroughly twice daily gives us two chances to remove plaque by flossing and brushing teeth before it forms tartar, also known by dentists as calculus. Any remaining plaque can harden - everyone produces tartar (calculus) but at different rates, and based on factors such as:* Saliva composition and flow* Poor oral hygiene* Smoking* Diet* Tooth crowding * Having fixed retainers can make cleaning more difficult especially behind the lower anterior (front) teeth.* What types of bacteria colonise your mouth - some people carry more of the periodontal disease causing bacteria than others.If left unbrushed and unflossed (or brushed/flossed sub-optimally) for 24-72 hours, remaining plaque may harden and become tartar that cannot easily be removed, except by a dentist or dental hygienist. The tartar can cause gaps to form between teeth and gums, under the visible gumline. This may lead to gum recession and thinning - coming away from the tooth, exposing sensitive dental roots, leaving them vulnerable to decay, and bone loss in the jaw. This bone loss needs preventing in order to reduce the chance of later tooth loss.These severe gum recessions are called periodontal pockets. The pockets are measured by a dentist and, at a certain measurement, may lead to a referral to a periodontist (a gum specialist). The periodontist will assess the condition and carry out more in depth treatment which may include surgical or non-surgical deep root cleaning and gum grafting. In most cases once the condition is under control they will refer you back to your dentist and or hygienist for ongoing monitoring and maintenance. I don’t want to upset anyone, nor retraumatise myself, by describing the procedure in any further detail. Here is an external link to a a basic description of the procedure, including benefits and risks of periodontal surgery. What are the common dental and oral symptoms of perimenopause?To contextualise periodontitis as a severe and fortunately rarer gum disease, let’s firstly list what we can expect as more likely, and less risky, symptoms that can occur during the menopause transition:* Gum and tooth sensitivity* Bleeding gums* Dry mouth* Burning mouth* Altered taste* Skin thinning of gums and palate* Grinding and clenching teeth (associated with anxiety, may only occur during sleep)* Overall reduction in bone mass density, which can occur in the jawbones occasionally leading to loose and lost teethMore information here: Oral health and the menopause: Experiencing problems with your teeth or gums? Discover how your hormones can play a part in these surprising symptoms (Balance)Unraveling the Connection: Menopause, Peri-Menopause and Periodontal Health (Pure Periodontics)Hormone Replacement Therapy shown to be highly effective in reducing gum disease (Oral Health Foundation)How Menopause Affects Your Oral Health (Healthline)Menopause and the microbiomeThere is still so little known about the inner workings of women and AFABs, because history has attributed our non-male biology, anatomy and menstrual cycles to witchcraft and hysteria. The human microbiome, not to mention all research into female bodily systems, have been scientifically explored less than outer space, which I find out of this world. Fortunately there is now a growing research interest into the role of the female intestinal (gut) microbiome, the oral microbiome, and the role that fluctuating hormones play in the menopause transition and beyond. Menopausal shift on women’s health and microbial niches (Nieto, M. et al., 2025) highlights that, during the perimenopausal transition, fluctuating hormone levels impact the microbiome. The changes to the microbiome communities leads to oral, intestinal (gut) and urogenital health complications and makes us susceptible to disease. ‘The gradual decline in hormone levels during perimenopause disrupts the balance of the microbiome, leading to a variety of anatomical conditions and health complications…‘… Estrogen influences microbial communities while microbes can metabolize and influence estrogen levels. Thus, the interaction between hormones and the microbiome is complex and bidirectional. Understanding the menopausal shift encompasses how hormonal changes, environmental factors, and microbial dynamics affect menopausal symptoms and women’s health.’Source: Maria R. Nieto, Maria J. Rus, Victoria Areal-Quecuty, Daniel M. Lubián-López & Aurea Simon-Soro, npj Women's Health volume 3, Article number: 3 (2025)Are perimenopausal neurodivergent people more likely to develop periodontal disease?Ha, as if anyone has researched this! Sorry - I mean, there is currently no academic research indicating correlation nor causation between neurodivergent perimenopause and periodontal disease, as far as I am aware. Because nobody has studied such a niche yet.So, as usual, I will draw from my own lived experience of what factors I believe led to my own devastating dental demise…London in the 1980s was an overwhelming place and time for a sensitive little redhead such as I. Born with a tongue tie that was never released, and only diagnosed on the fifth day of my second son’s life, I was born with a tendency towards gingivitis (it means “gum disease”, so no redhead or ginger jokes, thank you). My Mum’s love language is dressmaking for herself and others. She loved to adorn me like a little doll in homemade outfits made of the prettiest scratchiest netting. I remember with alarm the tight elasticated sleeves that allowed them to puff out balloon style from upper arm to shoulder, as I cried and rapidly lost blood flow below the elbows. I was uncomfortable in my own outfits and in my own skin. Everything was too bright, too loud and too scary. How did I manage the discomfort imposed on me by my very existence?By thumb-sucking, of course! And here’s something I never tell anybody: I sucked my thumb until I was 11, and I used to keep my own stinky socks from each day and sniff them at night, tucked up under my nose, wedged in place by my thumb. Bliss. Sensory seeking, much? There were many attempts to stop me - mustard on my thumb, bitter tasting nail-biting repellent and, of course, the warning that I was ruining my teeth. But to paraphrase former top super model of the 1990s, Kate Moss, “Nothing tastes as good as thumb-sucking feels”.This long term childhood stim inevitably resulted in a lifelong overbite, crowded teeth and a lisp. All of which have been problematic into adulthood, but I don’t regret thumb-sucking as a necessary self-soothing behaviour. Yes, anti-anxiety meds and an autism and ADHD assessment would have been more beneficial but, in the absence of any consideration that females could be neurodivergent, I did the best I could. We have all found our own coping mechanisms to get us into midlife. Some days I consider taking up thumb-sucking again, when I am feeling completely overbombarded with sensory and emotional dysregulation. Sigh. Now I know that crowded teeth are little plaque traps, and my long term “sweet tooth”self-medicating habit also made me prone to dental decay and resulting fillings. During my childhood I developed sub-optimal toothbrushing habits, fuelled by my ritualistic undiagnosed OCD behaviours. I brushed too hard (interoception differences), for too long (no sense of time) and too often (compulsive, repetitive actions made things feel “safer”). Maintaining my dental health in my early twenties felt like a waste of my low salary, as I was teaching and studying full time. I didn’t visit a dentist for many years, and carried on with my usual brushing technique. Flossing was a non-starter. I didn’t have time for that!My lagging executive functioning skills made it virtually impossible to book dental appointments. Conversely, I visited the GP frequently through adolescence and into my mid-thirties, until I was diagnosed highly anxious and autistic, and realised that my constant “cancer” scares and other issues were in fact due to health anxiety, formerly known as being a hyperchondriac. (Low dose Sertraline has eased that and my multitude of other OCD and anxiety issues.)It wasn’t until I was newly married in my late twenties that I felt compelled to initiate having my wonky teeth correctly aligned with orthodontic braces. Privately, and at great expense. My orthodontist was very empathetic, and both she and her assistant spoke with lisps and had been childhood thumb-suckers! I had found my people. The braces were tight, awkward and painful, which I oddly enjoyed. They were endlessly difficult to floss and brush though, and they led to developing near constant sores in my mouth. The overcrowding of my front lower teeth was slow yet staggering, as they all were moved back into alignment. It was a long process. But my eventual straightened teeth felt like a hard won battle that I wouldn’t let anything ruin! So, to come back to the earlier question I put to myself: Are perimenopausal neurodivergent people more likely to develop periodontal disease?I think I was susceptible to developing it due to my repetitive yet inefficient brushing behaviours. My childhood thumb-sucking stim led to the misalignment of my teeth, making it harder to eliminate plaque, thus encouraging the formation of tartar. Thanks to self-medicating my undiagnosed teenage ADHD, I was a smoker for a short while in the 90s. My periodontist agreed that dramatic orthodontic realignment (braces for my extra wonky teeth) may also have contributed to the periodontal pockets at my two front lower teeth that were the site of the gum graft.Certainly my chronic sugar habit may have disrupted my oral microbiome, and that was exacerbated by perimenopausal hormonal flux, before many other more stereotypical symptoms (i.e. hot flushes and The Rage) had shown up.I wonder if there may have been a genetic element at play? I don’t know for sure, and I probably never will…I don’t know what it is like not to be a neurodivergent person, but I think there are elements of my way of being in the world that contibuted to my long term gum health, or lack thereof. Perimenopause was effecting me at this time in ways I had not known possible. Perhaps future research will show that this is an epigenetic issue. Epigenetics means that behaviours and environmental factors affect how your genes work. In this case, where a genetic (or family history) of gum disease, alongside insufficient dental treatment and the adverse environmental factors align at perimenopause, resulting in development of periodontitis for some people. Maybe?I posed the same question to my retired dentist friend Kate, and here is her response:Me: In your professional opinion, are perimenopausal neurodivergent people more likely to develop periodontal disease? Kate: That’s a really interesting question. As a qualified, now-retired dentist — and someone who is both late-diagnosed neurodivergent and currently navigating perimenopause — it’s not something I specifically tracked in clinical practice, but I also wasn’t looking for it at the time.There isn’t yet a robust body of research directly linking neurodivergence and perimenopause to increased periodontal disease risk. But based on what we do know, my professional opinion is that the answer is indirectly, yes.Neurodivergent individuals often experience factors that can negatively impact oral health, including:• Executive dysfunction or burnout that interferes with consistent oral hygiene routines.• Sensory sensitivities that make brushing or flossing physically unpleasant.• Increased rates of anxiety or depression, which can reduce motivation or energy for self-care.• Medication side effects (e.g., from stimulants or antidepressants), especially dry mouth — a known risk factor for periodontal issues.• More intense or irregular hormonal fluctuations during perimenopause, which can heighten the inflammatory response in the gums.• Genetic links — both neurodivergence and periodontal disease susceptibility tend to run in families.• Childhood oral habits, such as thumb-sucking (more common among neurodivergent populations), that can lead to crowded teeth and make effective cleaning harder long-term.So while we don’t yet have conclusive studies to point to, it’s reasonable to suggest that the behavioural, hormonal, and genetic factors often seen in perimenopausal neurodivergent individuals could increase periodontal risk. Awareness, early intervention, and individualised support are key.— Dr Kate O’Hara, late-diagnosed neurodivergent woman, perimenopausal, qualified and retired dentist.So it wasn’t inevitable, but it seems the odds were stacked against me all along. The shame and deep despair I felt in needing the gum graft, and what I had done to let myself get into that situation were as extreme as the procedure itself. I feel like Dr. Kate has absolved me of my guilt!Post-Periodontal Disease CareFollowing my gum graft, I had several check ups with the periodontist. “It felt like I was looking after a newborn baby”, I told him. “Well, you have looked after it very well”, he replied. Post-surgical care was intense. The graft was a success and remains well attached to my gumline. I was relieved to soon be discharged back to my regular dentist and oral hygienist. I am on a frequent appointment schedule with the hygienist, around four thorough professional cleans each year. It is expensive, but I would rather invest in preventative dental care now, than have to shell out a fortune on reactive dental surgery again in the future. Either way, it will cost me money.Hypervigilance around my oral health is time consuming and emotionally draining as I would never wish to go through the procedure again. I worry endlessly about the health and stability of my gum graft as though it were my third child.Maintenance consists of twice daily interdental brushing of the gaps between all but my top front teeth, water flossing and using a pressure sensor electric toothbrush with a built-in timer with a fluoride toothpaste. The water flosser is practically a tiny water blaster for your gumline. You can’t help but feel clean after using it - as long as you are using it properly! It features in my previous post as one of The Unsexy Gadgets That Help Me Survive Perimenopause.I would love to know your thoughts on this topic! 💕 What changes have you noticed with your teeth and gums in perimenopause?💕 Do you think your neurodivergence affects your oral health and dental hygiene routine?Please let me know in the comments.Cheers,Writing this article has been a weekend’s work, and I look forward to spending more time chatting in the comments. Your donation makes it possible for me to advocate and support our autistic perimenopause community every day. Get full access to The Autistic Perimenopause: A Temporary Regression at samgallowayaudhd.substack.com/subscribe
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Fiercely advocating to raise awareness on temporary fluctuations and regressions in capacity during our autistic perimenopause. A safe space for our community to unmask, co-regulate, and share knowledge to self-advocate. samgallowayaudhd.substack.com
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