'I've lost my fertility, I've lost organs' - living with endometriosis

  • Report by Emma Collier

Endometriosis is a term not many people will have heard of. Yet one in 10 women worldwide are diagnosed with it.

The condition is notoriously overlooked and under-represented.

It takes on average eight years to get a diagnosis, which is why it's thought many people are unknowingly living with it.

Black women are also less likely to be diagnosed compared to white women, a review found.

A government enquiry in 2020 revealed the mistreatment of people with the condition and now women across the South West are calling on the government to act as a matter of urgency to help those who have it.

"I've lost my fertility, I've lost organs"

Kathryn Davidson from Falmouth said that her pain was so bad she 'thought she was going to die'. Credit: Kathryn Davidson

Kathryn Davidson, 40, from Falmouth has endometriosis and was forced to leave her career as a teacher because of the symptoms.

She took part in a government awareness campaign, but is now calling on the government to prioritise endometriosis treatment.

Kathryn's scars after her surgeries. Credit: Kathryn Davidson

Kathryn said: "As a result of me not receiving treatment at the right time, I've lost part of my bowel, I've lost my fertility, I've lost organs, I've lost out on my career, I've lost out financially.

"This is really serious and we are being really let down as women and it can't go on any longer."

"It feels like you’re being stabbed constantly"

Anaïs Thorn has had four surgeries to try and help her symptoms - the most recent during lockdown. Credit: Anaïs Thorn

Many women say the treatment is ineffective. One of those is Anaïs Thorn, from Devon, who has now had four surgeries to remove the patches of endometriosis.

They have grown back every time, and she remains in constant pain.

When asked what the pain is like, she said: "It’s like a fist, like Edward Scissor hands with loads of knives, literally, punching inside of you, pulling it all down, through the bottom of you.

"Sometimes it’s quite a few stabbing pains. It feels like you’re being stabbed constantly."

Kathryn added: "We really need to see some action from the government now. Not in six months time. Not in a year's time. We don't want to hear talks something might be happening. We need something to happen now."

What is endometriosis?

Endometriosis is a long-term condition with no cure. Cells similar to the lining of the womb grow in the wrong place - outside the womb and often on other organs.

During a menstrual cycle, those growths bleed and tear, creating scar tissue and sometimes causing organs to fuse together.

People can have stage one to four endometriosis.

Some people don't notice any symptoms, and some people have common symptoms such as extreme debilitating pain and/or infertility.

The current treatment options available are pain management, hormonal treatments - like the contraceptive pill or hormonal coil - and an operation to remove the patches of endometriosis, or to remove the reproductive organs or any organs affected by the growths.

There is nothing to stop the endometriosis from growing back after an operation.

Endometriosis is when cells similar to the lining of the womb grow outside the womb. Credit: ITV News

"I thought I was going to die"

Kathryn had to wait seven years before getting her diagnosis, despite countless trips to the GP.

She says she was finally taken seriously when her symptoms got so bad that she thought she was "going to die from the pain".

The government enquiry into endometriosis revealed the diagnosis time hasn't improved in more than a decade.

Charity leader Emma Cox says the guidelines laid out by The National Institute for Health and Care Excellence in 2017 haven't been implemented to help people with endometriosis.

She said: "There's NICE guidelines on endometriosis treatment and management that were issued in 2017.

"They set a good baseline for minimum care for endometriosis and diagnosis in the UK. They've been adopted in all nations of the UK, but they haven't been implemented.

"And so what we want to see is commitment from the government to ensure that they are implemented as a minimum standard of care.

"They also only deal with guidelines that are in the pelvic cavity, and endometriosis can be in other places. We really want to see that urgently re-dressed."

She also wants the government to commit to reducing diagnosis time. She said: "What we want the government to do is first of all make a commitment to reduce diagnosis time. There’s a shocking average of 8 years diagnosis - a time that hasn’t changed in a decade. And we believed that with good awareness and training that should be an average of 1 year or less by 2023."

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