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 artwork
So 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.
Share this post