'I waited 30 years for my endometriosis diagnosis'

"It's barbaric. That's how bad the pain is, It's absolutely barbaric."

A woman who waited 30 years to be diagnosed with endometriosis describes how she struggles in pain.

Nichola Howells from Manchester started experiencing extremely heavy periods at the age of 14 but spent decades being "dismissed" by doctors and even gynecologists.

The 47-year-old said it meant that by the time she was diagnosed she was "literally riddled" with the disease.

Nichola is not alone, with many other women reporting they were not taken seriously by health professionals.

The Department of Health and Social Care said it was trying to change things by investing in training and women's health hubs, adding that "waiting decades for an endometriosis diagnosis is unacceptable".

In the UK, one in 10 women have endometriosis, according to the World Health Organisation.

The average waiting time for a diagnosis has now reached nine years and four months, according to a new report by the charity Endometriosis UK.

Nichola, who grew up in London, started taking contraception to try and manage the bleeding but as time went on her symptoms got worse.

She said she was ignored or dismissed by health professionals, with one doctor telling her to "rid herself of her crippled mentality".

By the time she was diagnosed, she had reached stage 4, with deep infiltrating endometriosis spread across her ligaments, intestine, pelvis, ovaries and uterus.

She said: "Three decades is absolutely insane, to the point where I am literally riddled with endometriosis."

According the NHS, endometriosis is where cells similar to those in the lining of the womb (uterus) grow in other parts of the body.

It often affects the ovaries, fallopian tubes and the tissue lining the pelvis but can also affect organs, such as the bladder and bowel.

Rarely, endometriosis is found in areas outside the pelvis, such as in the chest.

Symptoms include severe abdominal pain, heavy periods, painful sex and fatigue as well as pain or bleeding in other areas of the body.

It is not known what causes endometriosis and there are currently no treatments that can cure it.

Another woman, Jessica Smith, said she was 12 when she started experiencing symptoms but it was only when she collapsed at age 24 she went to doctors to insist it was "more than just a heavy period".

Her ovarian cyst had ruptured.

A few months later, she heard about endometriosis on the radio and brought a list of symptoms to the doctor, which led to her eventual diagnosis.

She said: "The pain started to become a daily thing after my ovarian cyst ruptured and then my mobility started to be affected and I couldn't work."

The 32-year-old from St Helens told the BBC that after realising how little information there was on endometriosis, she decided to petition for there to be a national endometriosis registry.

"I couldn't find the right information to make an informed decision on my diagnosis. It was just a lot of guesswork and a lot of us feeling like guinea pigs when it comes to our health care," she said.

After taking the petition and her journey with endometriosis to social media, Jessica said that she created "quite a strong community, quite quickly."

"My message to people with endometriosis is to seek help, seek a community as well," she said.

"Reach out to people, it makes such a difference to know people and be friends with people with endometriosis."

Gaity Ahmad, a consultant gynaecologist, said she felt education was an issue "right from medical school".

She now leads the endometriosis service for the Northern Care Alliance and said there was a "dearth of training" and therefore problem "identifying and diagnosing" the disease.

She said research and training was vital and there needed to be specialised women hubs to refer patients to early on.

"We need to act urgently and unless the government intervenes, there is no hope," she added.

A Department of Health and Social Care spokesperson said: "Waiting decades for an endometriosis diagnosis is unacceptable, and these stories show just how badly women with the condition have been let down.

"We are determined to change that. We are renewing the Women's Health Strategy, training new doctors on endometriosis and cutting waiting times for gynaecology treatment.

"We are also opening women's health hubs providing care for menstrual problems and endometriosis and prioritising the condition through NHS online so women can get quicker access to NHS care."