‘Please tell me if I have it,’ I begged, still high on general anaesthetic.
My eyelids were heavy as I fought to keep them open. Lying in the hospital bed, my belly felt bruised and raw.
A nurse came and stood above me: ‘You have it. The surgeon said he was surprised you were able to walk.’
I burst into tears:
I had endometriosis.
But I wasn’t upset, I was relieved. Vindicated.
Thank goodness I hadn’t just undergone a four-hour diagnostic surgery – the only way to establish whether my chronic pain was, indeed, due to endometriosis; a debilitatingly painful condition where cells similar to those lining the womb grow elsewhere in the body – for nothing.
Going into the procedure, I was emotionally running on empty; and I can only imagine the despair I’d have felt if I’d gone through all that trauma just for them to say there was nothing wrong with me.
There should have been a less traumatic, less invasive way for doctors to diagnose me and the other 1.5 million women who have endometriosis.
But, while it’s too late for me, there’s hope on the horizon for those still seeking an answer for their chronic, debilitating pain: a new non-invasive scan for this excruciating gynaecological condition which has shown promising results in a trial on 19 women.
It involves an experimental radiotracer designed to bind to tissue that’s in the process of creating new blood vessels – a key feature of endometriosis – which can ‘light up’ the condition on a scan.
If implemented, this scan would likely drastically decrease the horrifically inhumane average diagnosis time for endometriosis of nine years, four months – rising to 11 years for ethnic minority women.
I’d begun experiencing excruciating shooting pains up both sides of my body back in 2018, when I was 19, after I’d come off hormonal birth control and switched to the copper coil. These pains would wrack my body, with the sudden agonising bursts causing me to fall over when they struck without warning.
Doctors dismissed it as pelvic inflammatory disease, a reproductive infection, sending me home with nothing but a packet of antibiotics – and ultrasounds couldn’t find anything wrong.
I felt crazy and genuinely began to question if it was all in my head.
In the end, it was a nurse who was removing my coil in a totally unrelated appointment in 2019 who told me she thought I had it. I’d asked her to be gentle because I was in constant pain and when I described what it felt like, she knew instantly.
‘It sounds like endometriosis,’ she said. ‘I have it myself.’
I’d never even heard of endometriosis at that point. But I promptly booked an appointment with a specialist she recommended; who finally told me that, to rule out endometriosis, I’d need a laparoscopy – a diagnostic keyhole surgery – but that it was a lot of effort, so I could ‘do it if I felt like it’.
By this point, when I wasn’t at work, I was bedbound. Once, after sex, I was paralysed with pain to the point I couldn’t lift my arm to pull the duvet over myself – my partner begged me to let him call an ambulance, but I refused. I knew they would have just sent me home with painkillers, like they had on the two previous occasions I’d sought emergency help.
Comment now
What are your thoughts on the new endometriosis diagnostic scan? Share below
Comment Now
I was almost resigned to a life of chronic pain – so, with nowhere else to turn, I opted for the surgery in 2020; and thank god, my suspicions had been correct.
Finally getting a diagnosis made my bad reaction to the anaesthetic – which included vomiting for two days straight even with antisickness medication – and accidentally ripping open my stitches totally worth it.
But I just wish I’d been able to have the new scan instead.
Being able to definitively see my endometriosis lit up on a screen would have saved me from the stress of being told by my consultant – even after my diagnosis – that the return of that agonising pain was likely ‘in my head’ due to my PTSD diagnosis from a sexual assault which had happened years before, rather than the endometrial tissue re-growing.
Understanding Endometriosis
Endometriosis is a medical condition where tissue similar to the lining of the uterus grows outside of it.
This disorder affects approximately 10% of reproductive age women.
Symptoms can include severe pain, heavy periods, fatigue, and infertility, but vary widely.
Find out more at: https://www.nhs.uk/conditions/endometriosis/
It would have saved me from being unsure whether undergoing my second surgery to see if my endometriosis had regrown in 2023 was the right choice. Spoiler: it was.
And then there was the specialist who told me before my first surgery – and therefore before I even had a formal diagnosis – that I could ‘try getting pregnant’, as that would likely ‘stop the pain’.
It’s deplorable that pregnancy is suggested over getting a solid endometriosis diagnosis; in fact, girls as young as 14 have been given this same advice.
This appalling resort is yet another reason we desperately need this new scan.
But women shouldn’t have had to wait until 2026 to get a medical breakthrough like this one for the second most common gynaecological condition in the UK.
Then again, women’s health hasn’t been, and still isn’t a priority.
Wes Streeting may have announced new developments in the recent Women’s Health Strategy to ‘dismantle the culture and ingrained behaviours that allow medical misogyny to fester and grow’, but this empty claim was decimated when you realise the government’s Men’s Health Strategy committed £8 million to the cause – 60% more than the women’s plan will receive.
I guess I shouldn’t be so surprised that a non-invasive diagnostic procedure for endometriosis has taken so long to arrive.
But, while there still need to be more trials to determine if the new scan is truly effective, it’s the biggest glimmer of hope I’ve seen to date. If it was to be rolled out for women everywhere, and if these women didn’t have to go through what I went through, it would be a godsend.
And who knows; when my endometriosis inevitably regrows in the future and I once again become crippled by that searing pain I remember so vividly, maybe next time, I won’t have to have an operation to prove it.
Do you have a story you’d like to share? Get in touch by emailing [email protected].
Share your views in the comments below.
Comment now
Comments
Add as a Preferred Source on Google
Add as preferred source
Sign up to ‘s The Slice newsletter for your guide to what’s on in London, with trusted reviews, offers and giveaways.
