For Endometriosis sufferers getting a diagnosis is usually the start of getting treatment and the end of the long battle to get diagnosed. A disease with currently no cure, the need for a Laparoscopy to diagnose, and an average of eight years to get a diagnosis according to the APPG 2020 report, it’s understandable that you would breathe a sigh of relief and hope that you were finally on the road to getting some relief for your symptoms when you finally get a referral to a specialist centre.
Pre-covid NHS statistics show the highest amount of operations in the past ten years with 1473 annual operations in 2019. Despite the backlogs, with more specialist endometriosis centres opening and with awareness improving, you would expect this figure to rise post Covid. However, the picture is very different, with statistics showing that NHS users in particular are being overlooked in favour of private operations.
The British Society of Gynaecological Endoscopy (BSGE) data reveals, that for those with Deep Infiltrating Endometriosis (otherwise known as severe Rectovaginal Endometriosis), the number of annual NHS operations performed have fallen by 7.5%. Meanwhile, private healthcare operations have increased by the same amount.
NHS patients are now facing unprecedented waits for treatment or face using their savings, private insurance or taking out loans to pay for treatment to alleviate their symptoms.
Image credit: Debs Hunt
Image credit: Debs Hunt
Jodyne’s Story
Jodyne Henry, 35, from Nuneaton, Warwickshire, started getting pain five years ago. Due to the pandemic she wasn’t diagnosed until September 2021 with the disease at stage 2, her treatment consisted of the Mirena coil, injections and Mefenamic acid. Within three years she’s now at stage 4 with Deep Infiltrating Endometriosis and is still waiting for treatment, she said, “I would have been seen much quicker if I’d gone private.
Private is not an option money-wise. I only work 20 hours a week because of my endometriosis. I’m on universal credit. I’m also neurodivergent and affected by mental health issues.
I’d love to go private if I could. My money is not enough for me to even consider going private.
At this point, I’m still waiting for a specialist appointment. I have been waiting since 8th January. I’ve had nothing! Last person I spoke to was a gynaecologist while I was in hospital in London, who said, ‘we can’t do these operations because it so specialised. You need to be seen by a consultant under the endometriosis umbrella in gynaecology.’ I haven’t heard anything since then.”
ENDOMETRIOSIS APPG REPORT 2020There are no NHS care pathways for endometriosis outside the pelvic cavity, despite it affecting up to 10% of those with endometriosis. The APPG is calling for NICE to ensure that care pathways for those with endometriosis outside the pelvic cavity are developed and implemented, starting with thoracic endometriosis.
Charlotte’s Story
Charlotte Hammond, 33 from Sutton, initially started having symptoms in 2014 and found her experience with the GP and hospitals extremely stressful and dismissive.
“I’d never heard of endo at the time, When I went to the doctors about painful sex and bleeding after sex, I was sent for a smear test. I ended up having like five or six because I was only 24, and they couldn’t store my results because I wasn’t at the usual age (25) to have a smear test, but they were worried I had cervical cancer.
2022: Two years ago, I was really ill with no appetite, stomach pains, moods all over the place, I felt like I had a UTI all the time, really painful heavy periods, which for me wasn’t right as I hardly ever had periods on the contraception I was on. I was lucky enough that through work I get private healthcare, so that’s why I went private.
I had an ultrasound done in the August, went back in in the November for a few scans. I then went away to Yorkshire, and I woke up at 5.30am with stabbing pain. It literally felt like someone was stabbing me.
So, from Jan – July that’s how long I was going to the GP and hospitals for and that’s when I said I wanted to be referred onto a private hospital.”
Image Credit: Debs Hunt
Claire’s story
Claire Stevenson, 42, from Birmingham, feels the standard of care she has received has deteriorated. She said, “The standard of care, having had a few surgeries, is definitely getting worse.
They lost my MRI, told me I was having surgery on the 2nd June, assured me it wouldn’t be cancelled and then after the six-month wait to get to the surgery date they said they made a mistake, and they hadn’t scheduled me. It’s been three years waiting for the surgery now, one mistake after another.”
Claire is not alone in this opinion with 50% agreeing in our recent poll.
Image Credit: Debs Hunt
The NHS is one of the UK’s most cherished institutions but it’s no secret that the NHS has struggled with austerity cuts, lack of staffing, and long waiting lists in all departments.
Covid has left behind a legacy of backlogs, but this shouldn’t mean a rift in care between the rich and poor.
The NHS faces a moral and ethical dilemma based on who can and can’t afford treatment.
For sufferers without the funds to go private, being in pain, unable to function or work, is not what you’d expect post diagnosis.
Is it time for more accountability?
Many of the specialists who work in the NHS also do private work, so should contracts be made to make sure that operating lists outside of emergency operations are split fairly for all?
“Right now in England alone, there are nearly 600,000 people on gynaecology waiting lists. These waiting times impact both those awaiting diagnosis, and those living with endometriosis awaiting further care and management of the disease.
Claire Kelleher, Head of Support and Information at Endometriosis UK
The impact of lengthy NHS waiting times on those with endometriosis cannot be overstated. Living with endometriosis and in chronic pain can have a devastating effect on both physical and mental health; impacting people’s relationships, careers, finances and more. Plus, without treatment, endometriosis can progress and worsen.
The historic underfunding of research into women’s health issues is notorious, and the consistent lack of priority given to gynaecological conditions in policy and research clearly demonstrates wider societal inequalities.”
For more information about Endometriosis and the support available: https://www.endometriosis-uk.org/
Debs Hunt Digital Media 