Medical Validation & Surgical Approval. Finally!
Choosing to Live: The Logic, Grief, and Hope Behind My Upcoming Surgery
Trigger warning: gynaecological surgery, cancer risk, medical trauma, pregnancy loss.
Hi Team Auti Peri!
Apologies for going quiet on you in the last couple of weeks. I have seen lots of lovely messages and comments of support coming in and will get back to you as soon as I can xx
Parenting full-time, barely managing my household duties even with the help of my support worker and my husband, whilst dealing with the burden that is my spiralling mental health and my ailing physical capacity has all been too much. I have felt as though my entire life is being held in the balance, and that without a firm plan to make a significant change in my menopausal malaise, I have been at a total loss.
✨ TL;DR – Where I’m At Right Now ✨*
A quick round-up if you're skimming, low on spoons, or just tuning in…
💥 Everything’s been too much
Parenting. Mental health. Physical pain. I'm past capacity.🩺 Surgery is happening, YAY!
I've been approved for a total hysterectomy and ovaries removal.💔 Why now?
I've lost my energy, memory, sense of self, even reliable bladder control. I can’t keep going on like this.🧾 Prep was cue cards + tea
I can’t rely on my memory, so I used handwritten notes (and LEGO) for grounding and reassurance.🌬 Letting go, making space
It’s not a loss. It’s a release. I’m ready to stop the chronic pain and random bleeding.🌿 Still me
I’m still a wife, a Mum, a woman. That won’t change.🧳 This is old pain
My reproductive organs are weighing me down. It’s time to let them go.💊 Worried about HRT supply
No oestrogen = no stability. That’s a real fear.🔁 This isn’t a last resort
It’s just the next step. There’s still physio, gastro… maybe even a cabin in the woods.😶🌫️ I’m zoning in and out of autistic shutdown
Words are hard. I’m dissociating a lot right now.💧 Diagnosed prolapse
Stage one. I’m looking for a pelvic health physio and figuring it all out.🐾 My cat is keeping me grounded
Harry the ragdoll = emotional support expert.☕ I’m drinking the coffee anyway
Even though it makes prolapse worse. Joy still matters.📚 No paywalls
Every post is free. I want info to be accessible to all.🎤 Tell me what’s going on for you?
Which of these topics resonate? What do you want more on?* This outline TL;DR summary is courtesy of ChatGPT, and I have edited it for sense.
Prompts used, after I inputted the following article in its entirety: Bionic reading style (key syllables in bold for focus and flow, which ChatGPT only used in the first few lines…) and Easy-read formatting (short sentences, clear structure, plain language).
*No other AI used in this post - Harry cat really is that fluffy IRL! 😻
She said “YES”!
With great relief, I can now share that I have a treatment plan in place. Thanks to my long awaited gynaecology appointment last Friday resulting in approval for a total hysterectomy (surgical removal of my uterus A.K.A. my womb and cervix) and bilateral salpingo-oopherectomy (surgical removal of both my ovaries and fallopian tubes).
Surgery is a line in the sand after years of autistic perimenopausal regression, loss and despair.
Recent posts from The Autistic Perimenopause: A Temporary Regression archive on my reasons for requesting a surgical menopause:
Autistic perimenopause has already cost me my energy, my sense of self, my kids’ youngest years, my memory, my cognition, close to my entire capacity, and now, my bladder continence.
It must be stopped.
Even if post-surgery things are worse for a time, I won’t have to contend long term with any further unpredictable bleeding, overwhelming uncertainty, nor the hormonal flux that has cyclically threatened to ruin my life thus far.
I’ve been thinking a lot about my upcoming surgery and “losing” my uterus, tubes and ovaries…
Whilst anatomically and surgically it’s perceived by others as a loss, to me I am thinking only of the gains I can make in their absence. The time and space that can open up to me when I’m no longer dealing with pelvic pain, worrying about random bleeding, and freeing me from PMDD.
Not to mention creating space internally, lightening my internal load and hopefully surgically repairing the prolapse that was also diagnosed yesterday.
I don’t feel like my womb will be missing, nor that I will no longer be a woman. I will remain a wife and mother, and the emotional labour afforded me due to my gender existed long before I started menstruating. I will never outgrow it nor be liberated from it within my lifetime. It is too deeply entrenched in my society, culture and relationships.
Although if I could lose those gendered expectations alongside my surgery, I would absolutely welcome it.
I don’t believe my womb was my babies first home. I was. They were implanted in my womb (4 out of 5, one ectopic i.e. outside the womb), but they also infiltrated my heart, mind, blood, soul and body in my entirety. We were as one for many, many months and those changes within me remain - neurologically, emotionally, physically and spiritually. I don’t feel that having my reproductive organs removed will affect that.
Those body parts are now surplus to requirements. They are dragging me down. To be devoid of them will be a conscious uncoupling from the psychological strain they’ve put on me for decades, and the physical pain I’ve endured from them more recently.
I feel exhausted. My reproductive organs are now weighing me down and holding me back.
My main concern is what happens if there is another shortage of oestrogen patches or gel? How will I maintain my cardiovascular health, bone density and regulate my emotional and bodily systems? Seeing as I am already in chemical menopause this is already an ongoing risk, but to return to a non-medicated menopausal state would be to jeopardise my mental health entirely, to invite suicidal ideation back in, and increase the risk of my children being left prematurely motherless.
Rationally that is not a possibility I wish to invite into my ruminating state. Just as I am trusting the gynaecological surgical team with my life, so I need to trust the pharmaceutical industry with my future access to my life preserving HRT.
I am too broken to take on any more concerns. I feel that I self-advocated to the best of my ability, the doctor empathised and trusted me as a partner in the decision-making process and that the surgical resolution for my future well-being is for the best.
Yes, it’s drastic, yet necessary. Just as my emergency ectopic pregnancy surgery saved my life over a decade ago, so too shall this surgery improve and preserve my life going forward. I hope…
I’m lucky to not have any medical trauma, and to have free/subsidised healthcare available to me here in Aotearoa New Zealand.
I have exhausted all of the medical options available to improve my situation. I’ve also consciously made all the available lifestyle choices that are recommended for menopausal women, within my capacity.
Short of leaving my husband and children - but obviously taking the cats - to live a serene life in a cabin in the woods, I don’t think there is anything else I can proactively do to recover from this autistic perimenopausal hell.
Reversing the temporary regressions to my energy, capacity, memory and sense of self remains my goal.
Trust me, I’ve considered the isolated cat-filled cabin in the woods many, many times.
A hysterectomy and bilateral salpingo-oopherectomy is not my last resort though; there is always something else to try. Gastroenterologist referral for IBS, a pelvic health physiotherapist for my prolapse, and a cabin in the woods for my residual sanity.
There are so many things I want to tell you about, and to know whether you are affected by them too. I just need some time to process this impactful news and come to terms with it all. Being medically validated and empathised with is in itself a shock, but a welcome one.
The cue card reads:
Menopausal/hormonal depression
Diarrhoea and constipation
Pregnancy losses
Excessive bloating
Weight gain (and disordered eating)
Thickened endometrium and cancer risk
Fibroids
Adenomyosis
Endometriosis?
Insomnia
Fatigue
Progesterone intolerance
Lifestyle
HRT
Medications
Hysterectomy
Oopherectomy
Retroverted uterus
Chronic pelvic pain
Bladder urgency and incontinence
For each item on this list, I had written a cue card documenting dates, scans, appointments, symptoms, impact on my quality of life and so on. Relying on my memory alone was not an option, and I came up against extreme demand avoidance against the article I had planned to write, publish publicly and share with the medical team at the appointment.
For my mind and body, analogue documentation felt like the safest way to share this data. It was all written very last minute, whilst my kids were swimming in the local public pool and I sat labouring over my notes in the bleachers. Hence the watermarks and smudges on many of the cue cards!
💕
And now, over to you!
I want to stop harping on about my own problems and finally feel able to put my teeny tiny violin down! 🎻
💕 What is going on for you right now?
💕 Are any of the topics in the list above affecting you? Would you like me to write about more about them?
💕 Do you know much about pelvic organ prolapse? Please educate me!
Pelvic organ prolapse is insidious and often asymptomatic
Yet another social taboo we can bust together! 💪
I was diagnosed with a stage one prolapse on Friday, and it explains a few of the symptoms above. Often a prolapse is present but we are asymptomatic. I am going to look for a local pelvic health physiotherapist to work on improving my symptoms. My personal trainer has already been awesome at building my programme around this. Unfortunately I was leaking urine whilst doing the very exercises intended to strengthen my pelvic floor, so the prolapse news was both upsetting and reassuring that there is something not quite right, and now I can work on it.
Here is a fantastic podcast episode on the topic of pelvic organ prolapse, which is a common but not “normal” condition, that can affect people of all genders:
I will leave it there, as I have been zoning in and out of autistic shutdown and disocciation leading up to the gynaecology appointment, and ever since.
I am glad to have shared the most important aspects with you, and I am not sure I can form any more sentences right now. I am pretty monosyllabic with everyone around me at the moment. You know when you have exhausted all your mouth words for humans, and can only speak to cats?
Speaking writing of cats, here is my loyal boy with a reassuring paw on my leg as I type! 🐈
I know caffeine is a bladder irritant that exacerbates symptoms of pelvic organ prolapse, but I still need some simple pleasures in my life, right? 😹
If you would like to support my advocacy work, but would rather not become a paid subscriber at this time, I would be super grateful if you felt like buying me a coffee.
Thanks! ☕️
📣 Did you know?
All my previous posts are available to you to read in the Archive section of my publication at any time.
Nothing is paywalled on purpose because I don’t want financial barriers to anyone accessing the information, personal stories and community I am creating here on Substack around autistic menopause. I would be so grateful if you would support my work by becoming a paid subcriber.
There are now 95 articles in the Archive, including lots of Auti Peri Q&As sharing the stories of other people’s lived experience of autistic perimenopause. Because it isn’t doom and gloom for everyone, luckily!
Due to a lack of responses, there are no upcoming Q&A posts to publish unfortunately.
I am still desperate for more Auti Peri Q&A respondents (here’s why), so please reach out if you are keen to participate.
I would love to share your story!
“There is so much value in the Archive!” affirms
If you are interested in a particular topic on intersecting neurodivergence, mental health and/or all things midlife and menopausal that I may have previously covered, you can search the Archive 🔍 as shown below.
First select the Archive (as circled in the photo) in the navigation bar, then click on the Search function (starred in the photo):
If there is a topic you would like to see me cover, please let me know in the comments, DM me on the Substack app/website, or email me.
Cheers,
Prolapse and hysterectomy surgery planned for fall, but still not sure how I’m gonna get the time off. (Have they mentioned prolapse and autism link?)
I know a lot of energy went in to preparing for this appointment over weeks and it was a huge weight off your shoulders to have your concerns addressed and your wish granted. I hope in these next few days you can take time to do some fun for you things that will help resettle your nervous system, make you feel comforted, and help you process the prolapse news (it's nothing you did wrong. It is what it is as a woman 🩷). You just accomplished something huge and now have a plan!