As a teenager, Zoe Bailey would often vomit or black out at school when she was on her period. For years, doctors told her the excruciating pain was normal for women.
She'd never heard of endometriosis when doctors finally diagnosed her nearly 10 years later, at the age of 23. The debilitating long-term condition is now thought to affect one in 10 women.
It occurs when tissue similar to the lining of the womb grows in other places such as the ovaries and fallopian tubes, and currently there is no cure.
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Zoe, from Levenshulme, underwent her first surgery at St Mary's Hospital to remove the endometriosis back in 2015, and claims she was told that the pain would go away following the procedure.
But, six weeks later, all of her symptoms returned and she was booked in for more surgery. This time she had to have an injection to temporarily stop her ovaries from functioning, and was told she'd need IVF to have a child in the future.
It was a hard blow, but a decision Zoe knew she needed to make to put a stop to the agonising pain. Tragically, in 2019, her symptoms returned again - this time worse than before.
Zoe claims she was booked into theatre, with surgeons planning to check if the endometriosis had returned and remove it if so. She says she did not expect to have any part of her body removed.
But, she claims that when she woke up, she noticed a stoma bag attached to her - and was told by medical professionals that the endometriosis was so severe that they'd had to remove part of her bowel, as well as part of her cervix and part of her uterus, meaning she'd never be able to carry her own child.
"My world was absolutely shattered," she said, speaking to the M.E.N.
"I expected it to be nothing, but when I woke up I was told my endometriosis was that severe I’d had to have my bowel removed and part of my cervix and uterus too. This was life-changing - for me to wake up to a bag on my side and to be told I’d never be able to carry my own child.
"I never knew anything about what it would mean to have a stoma," she added. "I had the surgery on Friday and didn't see a stoma nurse until the Monday. I was initially told I'd only have to have it for six months but I still have it now, three years later."
Now aged 30, Zoe still suffers from extreme pain, which isn't just restricted to when she is on her period. Last month, her symptoms became so bad she had to go to A&E. She now fears she will have to have a hysterectomy - which would see all of her uterus removed and would prevent her from producing her own eggs.
"I was in agony at work and by the evening I couldn't even move. I never realised my endometriosis was back so bad and this time I was told the only way to make it stop was to have a hysterectomy - meaning I'd never be able to have my own child.
"They said the only way I could have a child would be to have my eggs frozen which I have to fund myself. I've had to start a gofundme page because there's no way to be able to afford it."
Zoe says she has always known she wanted children and has been trying for a baby since she was 21.
To make the situation worse, Zoe claims it was only when she visited A&E that she was informed that the gynaecologist who had been treating her for years had retired. She has since been referred to the gynaecology unit at Withington Hospital.
Since being diagnosed with endometriosis, Zoe has had to stop working in a care home because she was unable to do any manual handling, and had to take regular time off due to the pain.
"People just weren't really aware of the condition," she said. "The pain is horrendous. One minute I can be fine and the next thing I have excruciating pain and can't breathe. It just cripples me.
"It's got worse now so it's literally all the time, I don't even have to be bleeding. I've been prescribed birth control but that just stops you bleeding, it doesn't cure the condition.
"It's made relationships difficult. When you have sex it's painful and afterwards you literally can't move. Then there's the mental side of it, when everyone around you is having children and settling down and I can't do that.
"I have suffered from depression and anxiety and sometimes I just think 'how am I meant to cope?'"
Zoe believes there needs to be more information and awareness of endometriosis - especially among some medical professionals.
"I have been to the doctors saying I have endometriosis and they often say 'what is that?' New doctors who don't know me just think it's related to my period but it's not.
"My advice to other women would be; know your body and listen to it. Periods are not meant to be painful to the point you pass out."
You can donate to Zoe's fundraising page here. For more information about symptoms and support for endometriosis visit https://www.endometriosis-uk.org/
A spokesperson for Manchester University Foundation Trust, who run St Mary's said: "We are taking Zoe’s claims very seriously. We understand she has contacted PALS regarding her concerns.
"The PALS team are investigating the matter further with St Mary’s as part of their standard complaints process and will feedback to Zoe as soon as the investigation is complete."
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