Leeds' women share pain over 'catastrophic' impact of endometriosis

As an inquiry is launched into a debilitating condition which affects around 1.5m women in the UK, RUBY KITCHEN meets with some of those affected by endometriosis.

By Ruby Kitchen
Saturday, 12th October 2019, 7:00 am

There is almost a hidden epidemic, mother Michelle Middleton warns, in a condition that has until now been silently endured by countless women.

There is no cure for endometriosis, and no known cause.

But with an estimated one in 10 women impacted, the founder of a support group for Leeds and Bradford adds, it is a condition that cannot be ignored.

Michelle Middleton, who founded an endometriosis support group for Bradford and Leeds, has just undergone a total hysterectomy in the hope it can improve her quality of life as she battles daily with the condition. Image and video: James Hardisty.

"It's had a catastrophic affect on my life," says the 41-year-old, who has just undergone a full hysterectomy in the hope that it can ease her pain.

"There's so much potential that's been taken away from me. At every step with endometriosis, you're at a disadvantage. You have to be made of steel."

Inquiry to be launched

Endometriosis is a painful condition, as common among women as diabetes, which sees cells like those in the lining of the womb found elsewhere in the body.

Michelle Middleton, aged 41 and from West Yorkshire, says the impact of endometriosis on her life has been "catastrophic". Image: James Hardisty.

It can impact on those of childbearing age, and can result in painful or heavy periods, chronic pain, fatigue and infertility.

MPs are to launch an inquiry into women's experiences of the condition, after more than 13,500 women shared their experience as part of BBC research published this week.

Half said they had had suicidal thoughts, and many said they rely on highly addictive painkillers.

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Grace O'Neill, from Bramley in Leeds, age 29, has finally been diagnosed with endometriosis after a five-year battle but now faces a lengthy wait for surgery.

Grace O'Neill, from Bramley, was diagnosed a few weeks ago after five years of near constant pain.

Her condition has at times been dismissed as a bladder problem, or psychological, with a paramedic once offering her paracetamol for her "women's troubles", she claims.

There have been times, she adds, where she has gone to A&E for help. She copes now with a daily mix of prescribed painkillers including codeine and Tramadol.

"Every day I wake up in pain, I go to sleep in pain," she says. "I don't remember what it's like to not be in pain.

Keisha Meek has founded a support group for people in Leeds and wider Yorkshire with endometriosis. From left, Amanda Ward, Melissa Porter, Keisha Meek, Stephanie Jordon and Rosa Nolan-Warren. Picture Jonathan Gawthorpe

"I'm waiting for surgery, but I've been told it will be April next year," the 29-year-old adds.

"The GP suggested it might be quicker if I go private, but I don't have £3,500 to spare, and even if I did, I don't think I should have to."

Excruciating pain

Miss O'Neill's symptoms, though beginning as a teenager, had worsened as she reached her mid-20s.

Faced with constant abdominal pain, it had been a long journey with various doctors to find out what was happening.

"A lot of women give up pushing for a diagnosis, it's such an intrusion," she says. "I kept going back. I was in excruciating pain.

Michelle Middleton has been campaigning and raising awareness of endometriosis since her diagnosis 13 years ago, and was one of the first to set up support groups for women in Bradford and Leeds. Image: James Hardisty

"There's so much misinformation. One doctor suggested the pain might ease if I had a baby. It's perceived as a women's problem."

The mental toll has been nearly as great as the physical one, says accounts worker Miss O'Neill, having to constantly cancel on friends she has given up trying to explain.

"I don't want to sound weak," she says. "It shouldn't be that way. For me, it's now about trying to accept that this is the pain I have to live with."

Having fought for five years to get a diagnosis, she strongly believes the numbers of women affected may actually be much higher than one in 10.

Welcoming news of an inquiry, she says one of the greatest challenges is misinformation. And a lack of understanding of what the condition is - and when period pain is not normal.

"We need to be having these conversations in school, at an early age," she says. "We can't be too embarrassed as adults to discuss it.

"We talk about period pain, but we don't talk about what it's supposed to feel like."

Toll on mental health

Keisha Meek attempted suicide at her lowest point, feeling she had nowhere left to turn.

It took nearly 10 years for her condition to be recognised for what it was, the 27-year-old from Kippax says, followed by a year's wait for therapy.

And, having already undergone 11 surgeries, she ended up back in hospital this week with resultant bowel problems.

"I've never looked like there's anything wrong with me," she says. "There's nowhere for people to turn to, if they're in pain.

"For years I was taking Tramadol and codeine, every time I went to the doctors that's what they would give me.

"I was in so much pain, crying and throwing up in the toilets at work. I was really suicidal. I tried to take my own life. Nobody would listen to me.

"There has to be greater support and help in the future."

Miss Meek, who now lives in Normanton, has been suffering since the age of 11, but she says her every concern was brushed aside by doctors.

At 18, when she finally saw a specialist, she was diagnosed with polycystic ovaries. It took a second specialist to recognise it as endometriosis.

Trying for a baby some years ago, she also suffered a number of miscarriages.

"I'm lucky in some respects, in that I now have a very supportive partner and a good employer, in a position where I can work from home," she says.

"But I've lost so much. Before this I would end up in reviews and disciplinaries, because of the amount of time I was taking off.

"I've been put on probation six times. I've had to leave jobs, before I was fired. One manager asked what I would do to improve things. The answer is, there isn't a cure."

Miss Meek helped set up the National Endometriosis Sufferers Support group in 2017, and it has now grown to include 7,000 members.

Welcoming an inquiry, she says more must be done to recognise the impact it has on women and to attempt to accommodate that.

"It's not recognised as a disability, which it should be because it's one of the most painful things a woman can have," she says.

"Employers really need to be educated about what it is and put in extra support."

Mother of two Michelle Middleton, whose has undergone seven previous surgeries and has now had a full hysterectomy, has welcomed an inquiry into endometriosis in the hope that it can lower diagnosis times which can be seven to 10 years. Image: James Hardisty