LIFESTYLE FEATURES

‘It took me 11 years to be diagnosed with endometriosis. It took so long my body is damaged permanently’

A new government report found it takes an average of eight years to be diagnosed with endometriosis in the UK. Dr Robyn Atcheson, 31, from Queen’s University Belfast waited even longer

On 19 October, the All-Party Parliamentary Group published a report, which found it takes an average of eight years to be diagnosed with endometriosis in the UK. That wait time has not improved in over a decade despite the condition affecting one in 10 women. MPs are now calling for an urgent improvement in care .

My periods started when I was 12 and would last around 14 days, along with intense pelvic pain and such heavy bleeding I needed multiple sanitary pads and pairs of underwear. They quickly took over my life. When I was 13 I started going to the GP and was told to adopt the “wait and see” approach. But when that didn’t make any difference I was put on the pill at 14 to help control the bleeding. While this did help to plan my periods around school exams, it didn’t even touch the pain I was in.

Through my teenage years, I kept annoying the GP, reminding them of how much pain I was in. My mother had been diagnosed with endometriosis in her twenties and had a hysterectomy. We both repeatedly asked for me to be referred to a gynaecologist but my doctors just kept telling me the pain was all in my head and that I was only complaining for attention.

I was passed around general medicine and paediatrics, being told I was experiencing “growing pains”, and it was normal. When they couldn’t find anything in my scans, I was diagnosed with Irritable Bowel Syndrome and given treatments that I didn’t need. They believed I was too young to have anything seriously wrong with me. It didn’t matter that I had been rushed to hospital multiple times after collapsing at school, on one occasion being sent to the early pregnancy clinic in my school uniform. 

When I turned 18, finally a legal adult, I asked again to be seen by a gynaecologist. This time they agreed. As I started university I felt so hopeful and excited that I was at last getting somewhere. That hope was misplaced. Gynaecologists still didn’t believe there was anything wrong despite the textbook symptoms of endometriosis I was living with.

I had painful, heavy periods, I suffered with fatigue, I couldn’t use tampons due to intense vaginal pain, I was having issues with my bladder and bowels. On top of all this, I was burning my own skin due to having a boiling hot water bottle pressed into my tummy almost constantly, the only thing that seemed to bring me relief. 

Having hot flushes, night sweats and crying at paint adverts was not something I thought I would deal with in my early twenties

The gynaecologists I saw prescribed an intrauterine device (IUD) [a small device inserted into the womb to protect against pregnancy for between 5 and 10 years] in the hope of regulating my cycle. Then a few years later decided to put me through a temporary, artificial menopause. Having hot flushes, night sweats and crying at paint adverts was not something I thought I would have to deal with in my early twenties, swapping tips with my grandmother on how to handle them.

I would have been happy to put up with these side effects though if the treatment had worked, but it only made me worse and I ended up hospitalised. In hospital I was told again that there was nothing wrong with me and I needed a psychiatrist. 

I was finally diagnosed with stage four endometriosis at the age of 23, eleven years after I first went to a doctor about my symptoms. Endometriosis can only be diagnosed through a laparoscopy, a keyhole procedure. I was told on the way to the theatre to prepare myself for disappointment because there was no way they would find anything. When I woke up in recovery, the consultant apologised to me.

My insides were riddled with endometriosis; around my bladder, uterus, vagina, rectum and embedded in the pelvic wall. There was so much they couldn’t even remove it as they hadn’t prepared for this possibility. I was so relieved I cried. I wasn’t crazy, it wasn’t all in my head, I was sick, the pain I felt was real. Why had it taken so long to get to this point? 

My bowel is twisted out of shape and doesn’t function normally and my pelvic muscles and ligaments have been injured so much they will never work properly again

I’m now 31 and have had seven surgeries related to endometriosis – to remove adhesions, separate my uterus from my colon, to investigate the damage caused to my bladder. Because I was left undiagnosed for 11 years, the disease damaged my body permanently. I now have a bladder condition called Interstitial Cystitis or Painful Bladder Syndrome, my bowel is twisted out of shape and doesn’t function normally and my pelvic muscles and ligaments have been injured so much they will never work properly again.

Amongst all these surgeries and further conditions, I studied and gained my PhD in history, winning a national prize for research in medical history. Unfortunately, the damage done to my body has left my general health in tatters and I can’t work full time. Without the support of my wonderful mum, granddad and boyfriend, the little I can do now would not be possible. 

The latest findings don’t surprise me. People with endometriosis are repeatedly dismissed and disregarded. Women’s pain is taken less seriously than men’s and endometriosis is a prime example of the gender bias in our healthcare system. That’s before we consider racial inequality, the experience of LGBTQ people or medical anti-fat bias. We still don’t know the cause of endometriosis and there is still no cure.

Culturally, we’re conditioned to not talk about menstrual matters which is why so many people put up with symptoms like painful periods or painful sex for so long. Even when you go to the doctor and specifically ask about endometriosis as I did, you are often dismissed or given out-of-date advice or treatment.

I live in Northern Ireland, part of the UK with the longest waiting lists for gynaecology. We desperately need something to change. This disease ruins lives, cuts short careers, breaks down friendships and relationships and cruelly dashes dreams of having children. The statistics from this report also show, sadly, my story is not uncommon.

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