'I had to leave my job due to endometriosis'
Samantha Ray, 34 and from Hartlepool, was diagnosed in 2021 while she was being treated for a hernia, having suffered monthly pain for years.
She gave up her job working for a council in January and now runs a support group for women in the north-east of England.
The condition was not spoken about enough, she said, and called for more training for health professionals.
It is estimated endometriosis affects 1.5 million women in the UK and can cause chronic pain, heavy periods and extreme tiredness.
The condition occurs when cells similar to those in the lining of the womb grow in other parts of the body like the pelvis, bladder and bowel.
Mrs Ray said: "I was in pain all the time, all month long. Every day is just pain, it affects my life.
"I had to leave my job in January, because I was struggling at one point to survive."
She said a lack of awareness meant girls thought "it's a part of life, being in pain and it's not normal".
She said she would like to see more training "around what's normal and what isn't" and for doctors to know the warning signs.
"A lot of GPs are quite dismissive and I think that is what needs to change," she said, "as well as educating young women."
The support group, which is supported by the charity Endometriosis UK, runs weekly sessions in Hartlepool.
One attendee is Katherine Elliot, 50, who found the group on Facebook having looked for support for years.
Mrs Elliot was diagnosed with endometriosis in 2018 and said despite being a nurse, she had not thought the pain she was suffering was endometriosis.
She said: "I started to experience symptoms in my late teens whilst I studying at university. I had no knowledge of what endometriosis was, in my mind I expected that it was cancer.
"I had an ultrasound and nothing was cancerous. My GP mentioned endometriosis but only in passing. I was put on birth control and that was that."
She said it was not until she went back to another GP a few years later over the pain that endometriosis was flagged "in the first few minutes".
"If it wasn't for that female GP, I probably would have walked away as I thought it would have been nothing," she said.
Doctors say being aware of the symptoms of endometriosis is the first step to diagnosis.
Gynaecologist Dr Pinky Khatri, at Middlesbrough's James Cook University Hospital, said some people felt pain on and off throughout the month, often when going to the toilet.
In some cases there could be bleeding.
There was "no one symptom" of endometriosis, she said, but "the more symptoms which are described, the more likelihood" there was of having the condition.
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'We can't stay silent over endometriosis struggle'
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