Autistic perimenopausal pain is chronic, varied and insidious

Autistic patients need healthcare professionals to know that their discomfort can feel worse than pain, and that pain scales do not work for us due to our interoception differences.

Content warning: This is an opinion piece, and reflects my own experience of late diagnosed neurodivergence colliding with fluctuating hormones, uncontrollable unmasking, and increased suicidal ideation. I reflect on my traumatic medical treatment for ectopic pregnancy/baby loss.

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“What would you rate the pain out of 10?” is a seemingly straightforward question we are all expected to answer in the moment when seeking medical attention. Yet it can be impossible for late diagnosed autistic women to give a straightforward answer.

A lifetime of medical misogyny, internalised ableism, interoception differences, social masking, medical gaslighting, societal taboos and social expectations to have been “a good girl” during our formative years (quiet, still, small, forgiving, accepting, giving, holding back etc.) becomes a dangerous combination that sets autistic women up for three times greater risk of suicide in autistic perimenopause.

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This is a long one because I have a lot to say, so if you don’t have the time, capacity or interest for the full essay, here is my takeaway message lifted from the end! 💕

Within our autistic culture, we need to come together and build ourselves back up within community. To protect our hearts, share our intensities and our fears, and share in our vulnerability.

We are all social justice warriors, and we need to somehow keep our spark alive and keep fighting the good fight. Or, at least, survive the lows of perimenopause so that we can pick up where we left off post-menopause. Bring it on!

Remember, we don’t have deficits, we have differences.

We aren’t broken and we don’t need fixing.

We are exhausted and we need rest.

We are regressing and we need support.

We are lonely and we need community.

We are dysregulated and we need co-regulation.

We need to take up space to recover.

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Photo by Reid Zura on Unsplash

Interoception differences

My pain perception is not quantifiable on a scale rating of 0-10. Often I am unable to identify the location of pain, what the cause may have been (thanks, brain fog), the type of pain, the triggers or how long I have been ill or injured.

Interoception is one of the lesser known bodily senses. It is the sense of recognising one’s body’s signals such as pain, hunger, thirst, tiredness, sickness, temperature regulation and so on. Interoception is a fluctuating and lagging skill for many neurodivergent children and adults. During autistic perimenopause, my interoception skills have regressed dramatically, along with my functioning to fulfil needs such as eating, drinking, and getting to the toilet before it hurts.

As a parent, there is added complexity as I need to model interoceptive skills for my neurodivergent children, making autistic adulting even harder. Not only do I need to ensure we all have snacks, are hydrated, dressed for the conditions, I need to explain why these things are important to two boys who think nothing is important unless a Fortnite YouTuber tells them so. It is exhausting having to stay on top of all these demands, and finding accommodations for myself. I have to set timers to remind me to eat, because I have little to no sense of time, and I may not notice that I haven’t eaten . Leaving it too long between meals can I stir The Rage within me, and she is best avoided.

Oversimplification of complex issues in itself causes me immeasurable pain, ironically. Low level irritation and discomfort, such as a scratchy tag in a t-shirt, can be more painful to an autistic than an injury or illness. A non-autistic may not notice the tag, but feel pain more acutely and intensely following an injury.

As autistics, our interoception skills are different due to our different neurology.

Recently I injured my hand at home and I instantly felt unwell. Completely dysregulated, confused. My world was fuzzy, nothing felt right. I was distressed, disassociating and in inertia. Only once I had visited a physio and was given a hand splint did the pain scale back down and feel recognisable for what it was - a sore hand. The splint isolated the injury, stabilised the joint, and gave my mind the cue it needed to identify the location of the pain. From then on, I could manage the pain, feel regulated and rest that hand. I needed that splint to remind me that I was injured and that I had to change my routine accordingly. I was able to justify asking for more domestic help. I could take more rest days. Without the splint, I forgot the injury, and it couldn’t heal.

I was wearing the splint when visiting my parents in the UK. Whilst Dad was dying, I was trying to help him roll over in his hospital bed and get some level of comfort. I offered him a hand and he grabbed the splinted one, which was closer to him, for leverage. Can I compare and quantify the levels of pain I was experiencing physically to my hand, with the emotional pain of knowing these were his final hours?

As well as the physical and emotional pain, my body chose this time to have a bleed. As if things couldn’t have got worse, I then needed to cope with the physical and emotional pain of my prolonged autistic perimenopause.

My autistic pain is not linear, I cannot rate it on a scale. It cannot be compared or quantified. It lingers, it sprawls through my body, I can not pinpoint it. It often confuses me, daunts me. When I think the pain is gone, it leaves me dampened, dulled, unresponsive and in autistic inertia. I cannot feel pain in those moments, because I can not feel anything at all.

Autistic intensity

Autistics spend all day every day moderating our exposure to sensory stimulation, because we are hypersensitive to our surroundings. We can not efficiently filter out extraneous input neurologically, so we need to allow ourselves accommodations in daily life for self-protection and regulation. Our proactive methods of doing so are often the very “deficits” that our diagnoses are founded on: tiptoe walking to reduce sensory input from walking on a hard floor; hands over our ears in response to sudden, loud noises; avoiding eye contact because it can cause physical pain from the intensity; eating the same foods because they are familiar and well tolerated.

Autistics spend all day every day regulating our moods and reactions. It is exhausting, but for our own self-preservation we can act vanilla when we learn to suppress them and mask them. But vanilla comes at great cost to the neurospicy community. It is unnatural for us. It is exhausting.

As autistics, we need the time, space and understanding of others to feel our intense feelings intensely, since intensity is a vital characteristic of being autistic. Intensity is not something I can suppress without experiencing great pain, because intensity runs through my veins, as it does in all autistics. (Not literally, that would be weird.)

Our intensity causes deep pain and deep joy.

Our intensity causes shutdowns and meltdowns.

Our intensity amazes and repels others.

Our intensity can look like mania and desolation.

Panic, fear, exuberance, euphoria.

To others it can be “too much”, and so they want to rate it. They want to assess us according to our “deficits”, and categorise us with their functioning labels. They judge us and tell us whether we are being too much or not enough. That we don’t fit in; which is why we mask and suppress our vital pain and our intensities. We unwittingly turn on ourselves with internalised ableism. So by the time we reach midlife, we think we are surely losing our minds, when in fact we have been broken down.

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Medicalising autistic perimenopause

I am sitting in the nurse’s room at my family medical centre, with my Zoladex prescription on her desk. On her computer screen she has the most recent letter from my HRT specialist, which outlines the reasons for my appointment. I am having the GnRH Analogue implant (Zoladex) injected, and I have a lot of hope riding on this procedure. The nurse Googles the side effects, which I am already all to familiar with - namely, the symptoms of menopause. Bring it on! Surely by now I am desensitised to the breast pain, the weight gain and the brain drain. What else can go wrong?

The nurse tells me that my medical centre have had to update their computer system in order to give me this procedure. She says they frequently give patients Zoladex, but those previous patients are all men. Zoladex has many uses including palliative cancer treatment for prostate health issues, and also used in breast cancer patients. It is also used for treating fibroids and endometriosis. The health team didn't know it could be used to treat perimenopause in women and people with raging uteruses/ovaries.

I inwardly despair, because women’s health and medicine is still such an anomaly. But I am also glad to have offered myself up as the local guinea pig. My medical centre is a safe space for me, where I know I can openly discuss my myriad of health issues, yet nowhere is truly free of medical misogyny while it remains so societally entrenched.

“From what I’ve read, it could trigger a period”, the nurse empathetically tells me.

“Oh I have a Mirena IUD now because my bleeding would not stop. I need to try Zoladex and see what happens. I can’t cope with all my spiralling fluctuating hormones anymore”, I tell her in my big strong girl’s voice. The intended outcome of this procedure, in my case, used in the medium to long term (I have no idea for how long) is to force my hormone reproduction levels to flatline, effectively switching off my ovaries. *I am not an endocrinologist, I am a laywoman on the edge…*

A chemical menopause. A reversible, temporary, chemical menopause. Hormones will get added back in using hormone replacement therapy (HRT)/menopausal hormone therapy (MHT) to control and titrate the dose of estrogen, progesterone and testosterone needed to keep my body and mind functioning.

My current health goal is to survive perimenopause. Thriving has been put on the backburner for my foreseeable future.

The nurse at my medical centre forewarned me that the Zoladex needle for my GnRH Analogue implant injection would feel quite big compared to regular needles that I am used to. Therefore, there would be some bruising afterwards and, indeed, there has been! It was uncomfortable, but I had taken some preventative painkillers in advance to help me cope afterwards. Whilst the bruising continues to develop days later, I feel like the relatively painless procedure has triggered some previous pain within me. My scar tissue holds my pain - emotional and physical.

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Grief and trauma are painful

My ongoing low level discomfort around the area of my recent Zoladex implant is triggering old emotional and surgical trauma. I am feeling pelvic pain around the locations of my scars from my first pregnancy around thirteen years ago, which turned out to be ectopic. At that time, it had not occurred to me that I could be pregnant, due to my bleeding which I mistakenly had assumed was a period accompanied by pelvic pain that initially felt a lot like menstrual cramps. I called an out of hours doctor who had said not to bother taking a pregnancy test as the bleeding and cramps meant I couldn’t be pregnant. Medical misogyny and complacency is dangerous. Fortunately a friend who had had an ectopic pregnancy advised me to take a test; often it’s other women who are intuitively more adept at predicting medical issues than male doctors. I tested: positive.

What followed was a devastating whirlwind of agonising pain, constant oozing of prune juice coloured bleeding, multiple accident and emergency (A&E) hospital visits from Friday night all through the weekend, only to be sent home each time. They said they could not help me, even though I had had a positive pregnancy test and was clearly in agony and distress. I assumed I was having a miscarriage, as did they, but told me that it had to take its course and that I needed to be patient. One male doctor on duty took me aside and said that yes, it was likely I was miscarrying, and that I needed to know that it was not my fault, and that I couldn’t have prevented it. I mentally clung to his kindness.

A&E could not help me over the weekend because they said that diagnostically I needed an internal ultrasound scan at their Early Pregnancy Unit, which was only open Monday to Friday. Each time I went in, I was sent home to die, or that is how it felt. I was certainly sent home with my baby dying. Except when we returned on the Monday for the scan, it became clear that the baby wasn’t dying. But if they didn't immediately end my pregnancy, I would soon be dead.

By Monday the symptoms had worsened, and my husband and I sat amongst the other pregnant couples - them having reassuring scans, clutching their scan pictures and each others’ hands, glowing. When it was time for my scan, the sonographer initiated the scan, left us alone in the room to get the doctor, who then told us this baby was growing in my Fallopian tube, they were finding me a bed on a ward, putting me at the top of the queue for emergency surgery and were immediately monitoring my vital statistics. A rupturing ectopic pregnancy can be fatal, so they needed to remove it urgently. I did not have time to process any of this tragic news. I was hysterical and it took a very soothing doctor to finally explain why they were doing this to me: “We are sorry, but we don’t yet know how to move your ectopic baby into your womb, so we need to remove it. We need to end this pregnancy to save your life.” This explanation had made sense, but I was not happy about it. So how would I rate the pain now out of 10?

Soon after, I was rushed in to surgery for a right sided laparoscopy procedure. One pregnancy removed and a Fallopian tube severed, I also had to endure the pain of ongoing pregnancy symptoms without the pregnancy. I begged the doctors and nurses to give me something - anything - to stop my breasts throbbing, end my morning sickness. To take away the unbearable pain of no longer being a prospective mother. Tramadol made me hallucinate awful images of newborns every time I closed my eyes, I couldn’t bear any of it.

The sympathetic looks from the other patients. I was so jealous of the women who were my age now, all having had hysterectomies (yes please), with their morphine drips. With me tripping and having nightmares on prescription drugs. In hindsight, I was probably having meltdowns, but I didn’t know I was autistic. I certainly had a meltdown in recovery after the emergency surgery screaming “Give me my baby back! I want my baby!” I was shocked, empty and felt utterly bereft.

The pain of that week, and the subsequent weeks and months that followed, was prolonged and agonising. My heart was broken as I grieved the loss of my first baby, comforted by female relatives who had also experienced pregnancy loss who understood my pain. Also comforted by other people who hadn’t experienced pregnancy loss and wanted me to stop crying, and telling me that I should be reassured that, because I had got pregnant once, I could easily do so again.

Pregnancy loss is an enormous social taboo, particularly for anyone who doesn’t know that pain first hand. Even those who have miscarried, had stillbirths, or any reason for baby loss are resistant to talk about it. Toxic positivity does us all a disservice.

Was that the worst pain I have ever endured? How would I rate the pain of an ectopic pregnancy out of 10?

I have since had two early miscarriages that were painful, like very heavy periods, and I have also been through childbirth twice. Those two babies have now grown up into healthy 12 and 9 year olds (my second and fifth pregnancies respectively).

Were their births more painful than the pain of the baby losses? I don’t think so.

Menstrual bleeding, spotting, clotting - any level of blood loss is instantly upsetting for me. It can bring flashbacks to my baby losses. I even bled through both successful pregnancies too.

The pain of grief and trauma can linger far longer within me than any physical sensations. I feel pain viscerally. My mind transports me back through time and space into my own demise. I cringe, wince, rock, flap, stim. I usually don’t cry. I may not rub where I feel pain, or name it, or talk about it, because I do not process my pain in the same way as non-autistics. I will have flashbacks of previous episodes of pain and I will disassociate, or enter autistic inertia, or try anything to self-regulate.

Within my head, I unwillingly take myself back to the moment of an accident, an injury, just like I can replay cringy conversations in my head over and over.

This re-traumatises me. Non-autistics tell me not to do this, because it is easy for them to not do it. However my neurology prevents me from stopping doing something because I want to stop. Why do they think people become addicts, or self-harm, or self-medicate? Don’t they know that we wouldn’t do this to ourselves by choice? It is a difference. An autistic trait. A supposed “super power” when channeled correctly and productively by their reckoning. It is not having an overactive imagination. It is not being a worrier. It is a different way of processing pain. It is complex. It is unquantifiable.

My Mirena intrauterine device (IUD) was inserted as a spontaneous attempt to stop my constant bleeding that I was experiencing earlier in my perimenopause. Has the immediate finite pain of the Mirena insertion outweighed the chronic pain of the constant bleeding? While I cried softly holding the nurse’s hand - I think I cried, I certainly remember that while was the gynaecologist was tugging and positioning the IUD into position - the nurse praised my deep breathing. I had hypnobirthed my youngest in a birthing pool at home, but the acute intense pain of childbirth felt more productive than any other pain I have experienced.

Almost a year on, and with almost no bleeding since, the pain of the insertion feels in hindsight like a productive pain, because it has freed me from the endless bleeds, the pooling and oozing sensations that sickened me, the cramping and back pain that always accompanied the bleeding. My quality of life has improved as a result of not being re-traumatised daily of the baby losses and pain and bereavement that I have endured. How would I rate that pain out of 10? I can’t. I wouldn’t want to oversimplify such a nuanced complex phenomena such as pain.

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Is it any surprise that we unwittingly turn on ourselves with internalised ableism and unconscious medical misogyny when we are told by non-autistics that we have “deficits” in our pain tolerance?

We gaslight ourselves, when we think we just aren’t capable of feeling things “normally”. Myths that autistics don’t have feelings are repeated, when in fact we have the same range of feelings all humanity possesses, but we can’t regulate their intensity, so we learn to suppress them and mask them. No wonder once autistic perimenopause starts, our mask cracks and The Rage - a lifetime of repressed rage - spills out. So that by the time we reach midlife, we think we are surely losing our minds, when in fact we have been chronically and insidiously broken down.

Within our autistic culture, we need to come together and build ourselves back up within community. To protect our hearts, share our intensities and our fears, and share in our vulnerability.

We are all social justice warriors, and we need to somehow keep our spark alive and keep fighting the good fight. Or, at least, survive the lows of perimenopause so that we can pick up where we left off post-menopause. Bring it on!

• Remember, we don’t have deficits, we have differences.

• We aren’t broken and we don’t need fixing.

• We are exhausted and we need rest.

• We are regressing and we need support.

• We are lonely and we need community.

• We are dysregulated and we need co-regulation.

• We need to take up space to recover.