Will GnRH Analogue injections reverse my autistic perimenopausal regression?
I am now willing to try anything to prevent further decline in my functioning and capacity
On the night of my Dad’s recent death in England, I was sitting beside him feeling simultaneously sad about his rapid decline, and jealous of his morphine pump. I wished I too could be numbed of all pain. Physical and emotional.
Surrounding us on Dad’s Respiratory Ward were old men wearing gaping hospital gowns and groaning in agony. Cries of “Please help me! I can’t take any more!” were frequent, followed by the sounds of them effectively drowning from the fluid on their lungs. It was too much for me to bear and I had to wear noise cancelling headphones to block out the extraneous noise. We had enough to contend with behind my Dad’s curtained cubicle, and I could take no additional sensory input nor emotional overload.
As an autistic woman, I’m unable to filter out noise and depth other people’s emotions. I trusted the doctors and nurses to treat their patients while I stayed in my lane.
It was all a lot. I also had severe cramping period pain at levels reminiscent of early labour. But the bleeding didn’t flow. A tiny clotty bleed - spotting - that was enough to irritate my senses and send me to the toilet frequently, but not enough to completely spin me out. I pivoted frantically between holding my dying Dad’s hand, searching through my bag for painkillers, rocking forwards and backwards on the hard plastic hospital visitors chair, all whilst moaning to my Mum about the pain, and trying to find a bearable position in which to tolerate the pain (which gradually abated after a dose of ibuprofen).
Unable to ascertain in the moment why I may be bleeding, I later reached out to menopause doula and author Kate Codrington asking if this were something she had heard of happening to midlifers experiencing grief. Kate just happens to live locally to the hospital where my Dad died, and I had been listening to her generously free, soothing yoga nidras every night at Mum and Dad’s house when I couldn't sleep for tears of hysteria, despair and grief.
In response to my question, Kate said that bleeding in times of death is a very common experience. “If you think of the menstrual cycle as part of the emotional/spiritual regulatory system, as well as its biological function, then it makes sense. The release of death can trigger a release from the body, an opportunity to deepen the experience of letting go”. She is so wise.
My menopause management requires both spiritual wisdom, and medical treatment. I take an eclectic and holistic approach, using what works and discarding what doesn’t feel right for me.
Due to heavy, constant bleeding in perimenopause a year ago, I made the quick decision at an exploratory gynaecologist appointment to have a Mirena intrauterine device (IUD) implanted to see if that would stop the bleeding.
The unbearably messy, smelly, crampy constant flow that had triggered me into regular sensory overload and autistic shutdowns.
The constant flow that brought back awful memories of my previous pregnancy losses, causing unending emotional and physical agony.
The Mirena was a rash decision - but definitely the right one - as I have only bled twice that I can recall since then. Once incredibly heavily at a rock gig in Wellington, leaving me dizzy and faint, and missing out on a blinding set by one of my favourite bands (🤘 Queens of the Stone Age 🤘). The second time beside my Dad’s deathbed, not at all rock and roll.
As I do all too often when I panic about my peri symptoms (my usual boundaries dissipate in times of health anxiety, and I am grateful she hasn't blocked me), I texted my HRT doctor in New Zealand about my painful situation. She reassured me with gentle sympathy, as is her way, and recommended pain relief and suggested I use a hot water bottle to ease my pain 💕
Somehow it didn’t feel appropriate to ask the busy NHS nurses for their precious and scant time and resources to manage my pain. They had enough to focus on with their patient caseloads, and I was supposed to be focusing on my Dad while I still had him with me.
It was very clear to me that my hormones were being influenced by my saddened mood and the shock of Dad’s impending death.
I was experiencing a visceral reaction to grief.
Based on my pattern of previous perimenopausal lows, it is clear that my mood fluctuates according to my hormonal levels.
Our minds, bodies and hormones are not as clear cut, nor as compartmentalised, as the patriarchal medical system has led us to believe.
There must be a woman-led movement in menopausal medical management, with more research into the neurodivergent experience of hormonal transitions.
It is now known to be inadequate to treat female anatomy based on male anatomy, but with different sex organs.
We now know that women have different risk factors to men.
We cannot assume that the health profiles of midlife neurodivergent are the same to those on neurotypicals.
More research is desperately needed to support the wellbeing of autistic women in perimenopause, due to our risk of death by suicide being three times higher than that of non-autistic women.
Our hypersensitivities require medical support and buffers to endure this potentially traumatic hormonal transition.
During my most recent Telehealth consultation with my doctor, I told her of my ongoing reluctance to trial GnRH analogues. My HRT doctor and I have discussed “GnRH analogues” several times over the years. Gonadotrophin-releasing hormone (GnRH) analogue injections are used in gynaecological medicine to block hormones that cause ovulation. My vague understanding is that they block all hormones that cause ovulation inducing a temporary medicalised post-menopausal state. A chemical menopause.
I asked her if it is true that if I pace myself during perimenopause, I will have the energy post-menopause to live a more energised life? After all, that is what I have been led to believe my many menopause “experts” who encourage the natural, non-HRT/MHT treatment of perimenopause.
Phytoestrogen-wielding women tell me I should eat more legumes and embrace The Change as a natural progression of life…
They do not hear me when I tell them autistic perimenopause has made me consider taking my own life.
That I am not safe without HRT.
That my hormonal supplementation is crucial to my mental health, and the welfare of my family life.
That I have not just given up on myself.
All those voices. The same ones that get inside my own head and have been telling me that trialling GnRH analogue injections is giving up on my body. That it is extreme and unnatural and unwomanly.
Am I willing to be an autistic perimenopausal trailblazer? A gynaecalogical guinea pig? If I have learnt anything from watching my Dad die, whilst the other patients suffered around him, it’s that our physical and mental health are invaluable and irreplaceable.
I am unwilling to be at the whim of my hormones any longer.
I can not cope with the spontaneity and shock of random bleeds, unexpected pelvic pain, breast pain, frightening drops in mood.
The Rage is not something I feel my children should have to endure any longer, if there is a way to prevent or suppress it.
Being stuck in the middle of the sandwich generation is hard: weighing the needs of ageing parents and growing children, made all the more complex and challenging in the midst of intergenerational neurodivergence. We need to prioritise our physical and mental health needs in order to dig deep and support our families.
Mostly, we owe it to ourselves to end the struggle with our generation, and support ourselves to thrive.
Initially I was frightened at the idea of GnRH analogue injections, because it felt like such an extreme way of managing my symptoms. I didn’t then want to admit defeat against perimenopause, but I am now at a point desperate enough to make any effort to reverse my regressions in functioning and capacity.
When I first looked into GnRH analogues, a lot of search engine results mentioned it as a treatment used for pre- and perimenopausal breast cancer patients, to suppress their ovarian function. At the time, the mere mention of cancer frightened me, as is always the way with my chronic health anxiety. Yet the main side effects of GnRH analogues are menopause symptoms, which I already suffer from. I have a buffer already in place provided by my HRT regime.
My Current HRT Regime:
My doctor says I am now sufficiently oestrogenised through patches and pills.
I have plenty of progesterone from both my Mirena, and Utrogestan pills inserted vaginally nightly (more potent than when taken orally, and bypasses a lot of side effects, including wanting to take my own life. Progesterone depression is a thing).
Testosterone cream is also applied daily, and has been beneficial in alleviating my depression and increasing my energy.
I also take Sertraline to manage my anxiety.
I am not shy of medicating for my perimenopause nor my mood, so I am surprised at my own reluctance to trial GnRH analogues.
Until now.
My breakthrough came when my doctor patiently explained it all to me again, and I asked: “Are you saying that my own hormone levels are doing me a disservice because of the enormous fluctuations causing me unpredictable distress, rage and deep depressive episodes?” (Yes, I am just as succinct in conversation as I am in the written form 🤪)
“YES, THAT IS EXACTLY WHAT I AM SAYING!” she said, emphatically. She has, in fact, being saying so for a number of years, but I am a slow processor. It has taken me this long to interpret my overall decline in mood, which is becoming a more urgent problem that needs addressing.
The benefit to me will be that I will effectively have a flatline of natural hormone levels, so the constant peaks and troughs of hormones will be unable to rule my life, my emotions, and my energy levels. The injections start off being given monthly for three months, then subsequent longer lasting doses can be given.
I have been incredibly reluctant until now to consider trialling this treatment, as it feels like I am giving up on my body. I don’t know why I feel that way, and nor do I understand my idea that I should do perimenopause naturally. But “shoulds” get in my way and obscure my vision of what I am capable of, since they limit me and promote shame.
Given that I have been using hormone replacement therapy (HRT)/menopausal hormone therapy (MHT) for several years, I now would have thought I would have felt comfortable making this decision sooner…
I have heard that a common experience in many neurodivergent perimenopausal women during their forties is that they are quite broken by the time they reach their fifties. That they report anecdotally such things as “I feel like a shell of my former self”. And I find that really scary. Because I already feel like a shell of my former self, and that said shell is brittle, fragmented, cracked.
The thought of potentially sinking to lower lows than I have already sunk to is frightening. I can foresee further breakdowns along the road if I don’t try something to change the path of my descent now.
Since it is impossible to know how far away I am from the onset of my post-menopausal life, I can not plan for it. I can not know when or if I will move forwards. I am desperately trying to secure a foothold and keep gripping on to life with my bitten-down fingernails.
Autism requires a plan, a schedule, boundaries, certainty - I have none of those things. I am not prepared to undergo a surgical menopause in the form of a hysterectomy (removal of the uterus) or an oophorectomy (removal of the ovaries), so a chemical menopause is the next “best” thing. I use the term “best” with some reticence here though, since it feels like the best of a limited range of poor options.
So I sign off today as a frightened trailblazing guinea pig, who hopes to report positive results on reclaiming my mind, mood and body from the grips of perimenopause. I will write again and give a more informative and succinct explanation of GnRH analogues, rather than a repeat of this extensive oversharing and stream of consciousness. If you have struggled down to the end of this lengthy piece, I salute you 💕
I think as women we are so pressured to do everything "naturally" - age gracefully. But that's ridiculous. If you are suffering needlessly (to the point where your mental health and functioning is seriously impaired), then it is an act of love to do what you can to help yourself heal. Sending you love and strength on the guinea pig journey!
I’m a slow processor also and the peri/menopausal symptoms are agonizing. I’m a single 55-year old with a 14-year old. I’m trying so hard to be happy around my kiddo, but kids are wise and know when mommas aren’t doing well.
Thank you for sharing this!!