04 March 2024 , 13:53
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A hairdresser has bravely shared her story of living with the "unbearable" pain of endometriosis, a condition she unknowingly had for nearly ten years.
Rebecca Johnson-Richards, 25, first felt the severe pain when she was between 13 and 15 years old, but it wasn't until last year that surgery confirmed she had the condition. During those years, she went through numerous medical appointments, scans and even surgeries that didn't help - all while she doubted herself.
This comes as Endometriosis UK, a charity, reveals that the wait time for a diagnosis has gone up since the Covid-19 pandemic. Now, it takes an average of eight years and ten months to get diagnosed. Reacting to the charity's report, named "Dismissed, ignored and belittled", a Government minister agreed that "more needs to be done" and pledged to listen to women. Endometriosis is a condition where cells like those in the womb spread to other parts of the body.
It affects 10 per cent of women and can range from mild to crippling symptoms. It can also seriously affect a person's quality of life and fertility, reports Chronicle Live. The hairdresser started experiencing what she thought were severe 'growing pains' when she was a teenager. Rebecca, from Tyneside, said said: "For me, proper symptoms started when I was 15, but probably from the age of 13 I started to experience severe 'growing pains' in my legs, though they could never put their finger on it. That's when I would have first been starting my period.
"At 15 I went to see the GP and was referred for an MRI. I was told I had a cyst but it was nothing to worry about. I just took that on as true. But it started to get worse. I was getting lower back pain, and just in general a lot of unexplained pain, but it was during the time I would be having my period. I went back to the GP and had every test you could think of. But nothing was coming back. At the time I was just taking paracetamol and it was doing nothing."
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She went on to say: "I got that upped, first to naproxen but that didn't do much and then to co-codamol. In 2022 I had a diagnostic laparoscopy - but they found nothing - apparently I was perfectly healthy." Despite doubting herself, Rebecca pushed for more answers. After struggling to make friends and family understand her invisible pain, a breakthrough finally came.
She revealed: "I was sent to see a specialist at the RVI and they found it [evidence of the endometriosis] pretty much everywhere. To be honest, for such a long time I had gaslighted myself into thinking the pain wasn't real. You trust the tests and that sort of thing! And so actually it was quite a lot to accept - and I still have to tell myself that yes I have this, it's real, it's my pain."
Sadly, even though her operation to remove scar tissue and ease her pain worked at first, Rebecca is in severe pain again. She's waiting to see a specialist for more surgery. She explained: "It's getting to the point where it's unmanageable. It's physically and mentally draining. After surgery I was basically told, come back when your pain gets worse. My GP has been really understanding, now I'm back on a waiting list to see a specialist, that's where I'm at. Long term this is going to likely mean another surgery this year."
Rebecca's life is full of ups and downs because of her endometriosis. She hopes to start a family one day and wants others to know how tough this illness can be. "It's really hard," she shared. "There are days when it's ok, good days where I can get on with things, but there are the bad days where it is unbearable."
She also said it's been tough on her friendships, relationships, and family life, but her boyfriend is very supportive. She wishes people could understand what she goes through. A shocking new study shows it takes an average of nine years to get a diagnosis of endometriosis in the UK.
The charity Endometriosis UK says the delays can lead to worse symptoms and lasting damage. It wants the government to make sure it takes less than a year to get diagnosed by 2030. Emma Cox, chief executive of Endometriosis UK, said: "Taking almost nine years to get a diagnosis of endometriosis is unacceptable. The theme of Endometriosis Action Month 2024 is 'could it be endometriosis?'."
"Raising awareness of the symptoms of endometriosis with the general public, along with healthcare practitioners and those in charge of health services, will be a step towards shortening very lengthy waits." Ms Cox said this should be a "wake-up call" and decision-makers must stop "minimising or ignoring" the symptoms and impact of endometriosis.
Health minister Maria Caulfield said this was why the government had launched its Women's Health Strategy and added: "More must be done to improve women's experiences of the healthcare system, and for those women suffering from endometriosis we have a long way to go. From getting an initial diagnosis to getting the right care and treatment, we must learn from this report."