'I wasn't a drama queen - endometriosis is an incurable illness'

Kynleigh Parker was diagnosed with endometriosis after suffering with pains since the age of 13

When Kynleigh Parker was told there was nothing wrong with her as she battled excruciating period pains, she began to believe she was "a drama queen".

Since the age of 13 she had suffered with symptoms, but as she entered her 20s, she knew it was not just in her head.

Determined to find an answer, Miss Parker, from Sudbury, Suffolk, demanded help and was eventually diagnosed with endometriosis.

It is an incurable condition where cells similar to the ones in the lining of the uterus grow elsewhere in the body, affecting more than 1.5 million people in the UK.

For Endometriosis Awareness Month, Miss Parker, along with two other women from the county, are keen to share the realities of this often debilitating condition.

'Hysterically crying'

Miss Parker now shares her journey with endometriosis on her Instagram and has given talks to share her experience

As a teenager, Miss Parker was told by doctors her agonising periods were nothing to worry about and she was prescribed hormonal contraception to manage the pain.

The flare ups worsened as she got older, to the point where she would be "hysterically crying" with painkillers doing nothing to help.

Following one "really bad" bout, she was offered an ultrasound and internal scan.

"I came away from that and they said, 'You're absolutely fine, there's nothing wrong with you'," the 26-year-old explained.

"I thought maybe it was in my head, maybe I am a drama queen."

A gynaecologist later suggested it could be endometriosis, and in July 2022 a laparoscopy to assess her uterus confirmed it.

Miss Parker is staying positive that her endometriosis will not grow back

After some delays outside of her control and after freezing her eggs, Miss Parker had surgery to remove the endometriosis in January last year.

"I could never have prepared my body for that surgery," she said.

"I thought I'd feel rough for a week... it was five weeks later when I went back to work."

Miss Parker says it took seven to eight months until she "felt internally healed" and she is now 95% symptom free.

She explained she froze her eggs after doctors said her endometriosis may impact her chances of getting pregnant in the future.

While the condition does not necessarily cause infertility, according to Endometriosis UK it can cause fertility problems, but due to lack of research it is not fully known why.

"I'm trying to remain positive because maybe I'll be the person that doesn't need another surgery," she added.

"I'm really hoping nothing grows back."

Twenty six years of pain

Lorraine Clarke, 63, from Oulton Broad, similarly started to notice pain before, during and after her periods from the age of 15.

Birth control to manage the pain never helped and she was also misdiagnosed with an appendix issue.

Decades passed before Mrs Clarke demanded to see a gynaecologist.

They could not find anything wrong with her and she was also offered a laparoscopy.

"They had a look in my womb in three different areas and that's when I found out that I had endometriosis," she said.

At this point she was 41 - she had gone 26 years without knowing what was wrong with her as well as why she never conceived a child.

Endometriosis builds up around the fallopian tubes and ovaries and can also spread outside of the uterus

"I had a full hysterectomy and when I had my operation the gynaecologist came to my bed and said, 'Lorraine, did you ever wonder why you couldn't have any children?'," Mrs Clarke continued.

"After she had left I was in tears, that did upset me.

"I wanted two boys and a girl, but that didn't happen because of endometriosis."

Since her operation, Mrs Clarke said she had been "relatively fine", but still experienced sharp pains.

In the past week she had been back to the doctor and referred for an ultrasound.

"I wouldn't wish for my worst enemy to have endometriosis," she added.

"It is a horrible, horrible disease. It is horrendous."

'Bruised internally'

Michelle Chambers encouraged people with endometriosis to "trust in your own body"

In late 2007, Michelle Chambers, from Sudbury, experienced worsening period pains, feeling "bruised internally" with "sharp stabbing pains".

An initial appointment found no issues, but after a procedure to remove pre-cancerous cells following a smear test, doctors suspected endometriosis.

She was diagnosed in 2009 and had an operation to remove the endometriosis in 2010, but three months later it had regrown despite doctors telling her it was not possible.

Mrs Chambers had another operation in 2011 where she also had her fallopian tubes tied to prevent any pregnancies.

"When I had to make that decision to be sterilised, even though it was my decision, I grieved for that child," said the 44-year-old.

"I'd hoped to have a second."

Mrs Chambers said she had suffered some "ignorance" over the years with people suggesting she did not look ill and others telling her to "get on with it"

The endometriosis continued to grow back with another operation in 2012 under a new doctor, and in 2013 it was decided if she was still in pain she would have a hysterectomy.

"The hysterectomy happened six weeks after my wedding day, so that was our honeymoon," she said.

"It's a long, long recovery period, I wasn't expecting that."

In 2015 the endometriosis was removed again, but despite having pains in 2017, the endometriosis has not grown back.

"It does try and break you because the bad days are horrendous, the tiredness is absolutely crazy, you just can't describe it," she said.

"Thankfully I'm one of the lucky ones.

"I've had a partner who has stood by me the whole time, we've laughed a lot, we have been stubborn, I've made sure I researched a lot, listened to my body and made choices that were right for me."

'Let down'

A spokesperson for NHS England said: "The experiences of many women affected by endometriosis aren't good enough, with many waiting for too long before they get adequate treatment and diagnosis."

They added the NHS was rolling out women's health hubs and raising more awareness of the condition to help diagnose patients quicker.

A Department for Health and Social Care spokesperson added: "This government inherited an NHS where women wait up to 10 years for an endometriosis diagnosis - they have been let down for too long, but we are determined to change that."