‘Is there anything else you’d like to ask?’, the surgeon queried.
‘You wanted to ask if your cervix was being removed,’ my husband Chris prompted me.
It was my final appointment before my extensive endometriosis surgery, which would also see me having a hysterectomy aged 33 after suffering with adenomyosis.
I’m not even sure if Chris knows what the cervix was, or why I wanted to know if I would lose it along with my uterus and fallopian tubes, but he remembered that it was important to me.
The surgeon turned in his chair, away from me – the person whose life and body were about to change forever – to look my husband squarely in the face and say: ‘I see you’ve read that removing the cervix can impact male sexual pleasure. I’ll leave it in for you if she promises to be good and still get her smears.’
Chris, who had never read anything on the role of the cervix in sexual pleasure, looked at me in a mild state of panic. This was the first time he had just witnessed the medical misogyny I had been telling him about for years and had no idea what he was supposed to say now.
I, on the other hand, just sat there wearily. This response had almost become expected.
My endometriosis symptoms appeared when I was 11-years-old. I was in excruciating pain and bleeding heavily from my very first period.
My mum, who had endometriosis herself and was able to spot early warning signs, took me to a doctor. I was told it was perfectly normal – ‘just one of those things’ – and advised to go on the pill to sort everything out.
For the next 22 years, I just about managed but missed school, social occasions and normal teenage life. If I did go out I’d be in agony, terrified that I’d bleed through the period products I was layering up, barely registering what was happening around me.
I saw doctors repeatedly but the outcome was always the same: ‘It’s normal’, they’d say.
Chris and I met in 2010 and he was always attentive, supportive and kind but at first he thought I was ‘just being a bit dramatic’ about my periods. It wasn’t until 2021 that he started to realise that what was happening wasn’t normal – that something was very wrong.
At that point, after reading the book Period Power, by Maisie Hill, I realised I simply didn’t know what my cycles were like without medical intervention, so, aged 32, I came off the pill for the first time since I was 11.
Within a few months though the debilitating symptoms became daily – I would often vomit and pass out from pain and blood loss.
The only silver lining was that, after getting to that physical and emotional state, a doctor finally listened and, after two decades, I was finally diagnosed with endometriosis and adenomyosis.
It was terrifying how quickly our whole world became these conditions. Chris’s goals, plans and dreams all took second place to my rapidly declining health and I had to close my business, leaving him as the sole financial earner.
I was also near-bedbound for weeks at a time, so he took on almost all household tasks making him a carer for his wife effectively overnight.
As for our sex life, it all but disappeared as it had become too painful to even contemplate (a common symptom of both endometriosis and adenomyosis).
In May 2022, I had surgery with a private gynaecologist, who had assured me he would ‘solve the issue’, but the surgeon missed significant disease, including deep infiltrating endometriosis, and an 8x13cm section of disease that put my kidneys at risk of failure.
So, by the time we sat down with an endometriosis specialist in 2023, my mental health was shattered.
I had tried everything I could to relieve my symptoms – lifestyle changes, increasing amounts of pain relief, hot water bottles that burned my skin – and while decades of hormonal intervention had helped to a degree, it had also enabled the disease to progress unchecked.
I couldn’t see a life beyond pain, and that was not a life I wanted to live anymore. I was desperate.
That’s when I asked about a hysterectomy.
A hysterectomy is major surgery – especially when coupled with extensive excision of endometriosis – but the surgeon agreed that it was likely the best course of action in my case, despite being in my early 30s.
By this point, I just wanted my uterus gone. And I was validated when, after the operation, my surgeon told me: ‘We did the right thing at the right time, that was one diseased organ!’
Then he turned to Chris: ‘Don’t worry my friend, she’ll be good to go in six weeks’. It felt like the clock had started slowly ticking down to when I would be ‘ready’ to have sex again.
It’s important to add here that no pressure around sex came from Chris. It all stemmed from societal expectations of what a ‘good’ sex life is – boldly underlined by both of my surgeon’s comments.
For weeks, as I edged closer to that supposedly magical six-week mark, I worried. Would sex be awful now? Would it feel different? For me? For Chris? Would he want me anymore!?
As it turns out, sex was better – for both of us.
It wasn’t perfect, if that even exists – my pelvic muscles had been in such a state of trauma for so long that it was never going to be solved overnight – but it was no longer an excruciating experience that neither of us wanted to engage in.
Truthfully, sex is still a consideration over two years after surgery, but both of us have evolved our understanding and enjoyment of sex and intimacy now, which has brought us closer together than ever before.
Life post-hysterectomy is mixed: I was never overly maternal, but I valued my choice and having that option irreversibly taken off the table has been hard emotionally. And, as I write, I am still in pain.
Whilst ridding me of the adenomyosis, a hysterectomy is not a cure for endometriosis and it continues to wreak havoc on my health – my latest MRI shows that there is disease present again on multiple organs, fusing others together, causing daily pain and other symptoms.
Yet, slowly, Chris and I are moving forward again, working on our sex life on our own timescale and making accommodations for my still unpredictable health, together.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
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