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
Fibroids
All 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,
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