NHS worker reveals the stigma she faces having endometriosis: “I was told it was all in my head”

A woman has revealed the extent of the painful effects of endometriosis, that could leave her unable to have children, and the stigma that women with the condition face.

“At first, I was told it was because I am overweight and if I lost weight it would go away. I was even told at one point that it was all in my head.”

Angela Ali, 36, from Sydenham, suffers from the condition that has affected her both physically and mentally for over ten years.

“I have been robbed of my chance to have children because I have endometriosis,” she said.

“One in ten women suffer from endometriosis and I am just another number, but the reality is this condition is soul-destroying.

“I went to A&E almost every single week for a year at one point because I was in so much pain and bleeding so much.

“My symptoms started when I was 13 but I wasn’t diagnosed until I was in my late 20s.

“I have had now had three surgeries and I am waiting for my fourth, but endometriosis has completely taken over my life.”

Endometriosis is a chronic and often debilitating condition that causes tissue similar to the lining of the womb to grow in other places, such as the ovaries and fallopian tubes.

Mrs Ali also suffers from Polycystic ovary syndrome (PCOS) which is a condition that affects her ovaries and, like endometriosis, has no cure.

Both these conditions can affect a woman’s chance of getting pregnant and infertility can be as high as 30–50 per cent for women with endometriosis.

Mrs Ali works as a surgical booking co-ordinator for the NHS but is regularly forced to call in sick due to chronic pain she suffers from.

She said: “I love my job but because of my condition some days I can barely stand up because I am in so much pain and I have to go home early or call in sick.”

“To go into your managers office with a statement about your flare-ups, details about your intimacy and fertility, just to keep your job is something no one should have to do but it is the reality for so many women.

“People ask me about endometriosis but as soon as you start telling them you can see them becoming uncomfortable.”

On average it takes 7.5 years from onset of symptoms to get a diagnosis and the illness costs the UK economy £8.2billion a year in treatment, loss of work and healthcare costs.

Over the counter painkillers and hormonal contraceptives are the most common treatments for endometriosis.

Surgery is also available to cut away patches of endometriosis tissue or in more extreme cases, the removal of all or part of an organ is required.

The coronavirus pandemic has had a major impact on many sufferers as treatment and operations have been delayed to help ease the strain on the NHS.

“When my surgery was cancelled due to coronavirus, I literally sat and cried my eyes out. It was like someone had died,” Mrs Ali said.

“It was devastating. I remember thinking to myself there are people dying everywhere from Covid but you are crying about your operation.

“It gets to the point sometimes where you just think what is my purpose? other than to simply exist and be in pain.

“I don’t think people quite realise mentally and physically what this illness is doing to me and to other women.

“It doesn’t surprise me that a large number of women who have committed suicide because of it.”

In 2019, more than 13,500 women who suffer from the endometriosis took part in research by the BBC and it was revealed that half of the women said they had had suicidal thoughts because of their illness.

Like many endometriosis sufferers, Mrs Ali is an advocate for the need for more education in schools about the condition.

“I used to miss a lot of school because of my periods because of the pain and heavy bleeding but I was always told that it was normal, and I would grow into it,” she said.

“Medicine is still very much a man’s world and conditions like this can just be brushed off as being ‘just a period’ to everybody unless you have it or know someone who is having to deal with it.

“We need to start teaching young girls about this condition from a younger age.

“I’m not saying that we need to scare the living daylights out of them and make them worry if they have a heavy period but just educate them, because It’s not normal to have a week off of school for period pain.

“People don’t even realise that it is hereditary but having that conversation with your family is so important.

“When my mum researched the symptoms when I was diagnosed, she realised that she used to have similar ones when she was younger – I could have inherited it from her, but we will never know now.”

Angela is taking part in endometriosis awareness month and continues to share her story online via her Instagram: https://www.instagram.com/myendopcosstruggles/