'It's important for the next generation not to feel alone' - Leeds campaigners welcome MPs' report into endometriosis

Campaigners in Leeds have welcomed a long-awaited report by MPs which has highlighted the scale of suffering for those with endometriosis.
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An inquiry by the All-Party Parliamentary Group (APPG) on Endometriosis surveyed over 10,000 people and its findings have led to calls for ministers to take urgent action to ensure those with the condition have access to the right care and quicker.

The report, published today, revealed it takes an average of eight years for people to receive an endometriosis diagnosis - a timeframe which has not improved in over a decade.

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Campaigners who have set up support groups in Leeds have hailed the report for recognising the severity of the condition and say the hope it will help future generations "not to feel alone like we have done".

Michelle Middleton has been campaigning and raising awareness of endometriosis since her diagnosis 14 years ago, and was one of the first to set up support groups for women in Bradford and Leeds. Picture: James HardistyMichelle Middleton has been campaigning and raising awareness of endometriosis since her diagnosis 14 years ago, and was one of the first to set up support groups for women in Bradford and Leeds. Picture: James Hardisty
Michelle Middleton has been campaigning and raising awareness of endometriosis since her diagnosis 14 years ago, and was one of the first to set up support groups for women in Bradford and Leeds. Picture: James Hardisty
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Leeds women share pain over ‘catastrophic’ impact of endometriosis

The condition involves cells like those in the lining of the womb - which each month break down and bleed - being found elsewhere in the body, such as the ovaries, bladder, bowel and even the lungs.

An unseen condition, it is often referred to as a hidden epidemic which can cause chronic pain, fatigue, fertility problems, depression, issues with relationships and difficulties at work.

The inquiry by MPs on the APPG found over half of women, 58 per cent, had visited their GP more than 10 times in the hunt for a diagnosis and 53 per cent had been to A&E.

Keisha Meek has founded a new 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 GawthorpeKeisha Meek has founded a new 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
Keisha Meek has founded a new 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
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Once diagnosed, only 19 per cent knew if they were being seen in an endometriosis specialist centre and 90 per cent would have liked access to psychological support but were not offered it.

The MPs called on the Government to commit to a series of measures including reducing the average diagnosis times to four years or less by 2025, investing in research into the cause and treatments and adding menstrual health conditions to the school curriculum across the UK.

Michelle Middleton, 42, who had a hysterectomy last year in her ongoing battle with endometriosis, founded a support group for in Leeds and Bradford which has now grown into a worldwide Facebook group with over 8,000 members.

She welcomed the report and its findings for shining a well-deserved light on the condition and said it was "amazing" that it recognised the importance of education in schools and the impact on mental health.

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"They are the parts of the report which feels most exciting because they are areas we don’t talk about as much," she said, adding: "It’s a really good, solid place to start. We still have a long way to go - these are words and we need to see actions.

“I have had to fight all the way through, as have many other women, being told it’s in my head, being told there’s nothing they can do.

“Hopefully other women won’t have to have that fight and the hard struggle with the emotional impact of that as well as the physical.”

Keisha Meek, 28, from Kippax, is co-founder of the National Endometriosis Survivors' Support, and she agreed, adding: "I'm really happy, I think it's going to make a massive difference.

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"The inquiry as a whole - getting it out and there and saying it's a serious condition - people are suffering, breaking that taboo and the Government saying 'this is not OK', is really important.

"It's important for the next generation - not to feel alone like we have done, not being believed. There will be more understanding - it will help people at work and at school get more support, it will help relationships because men will understand it better too, also people in the trans community - those that are now men still have endo and that's been addressed as well."

Keisha, who has had 11 surgeries, added: "Cutting that diagnosis time down by half to four years is really important because by the time you get to eight years, it could have caused so much damage to multiple different organs, attaching organs together, people will have been off work, losing their jobs, getting into financial difficulties. It's just vital that that is cut down."

Sir David Amess MP, chair of the APPG, said: “The report provides a stark picture of the reality of living with endometriosis, including the huge, life-long impact it may have on all aspects of life.

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“It is not acceptable that endometriosis and its potentially debilitating and damaging symptoms are often ignored or not taken seriously - or downplayed as linked to the menstrual cycle and periods.

“All UK Governments must take the recommendations in this report seriously and act to ensure that everyone with endometriosis has a prompt diagnosis, along with access to the physical and mental health support they need to manage their condition.”

He added: “The APPG will not rest until tangible improvements are delivered to all those who suffer from this condition.”

Emma Cox, CEO of Endometriosis UK, said the report should act as a “final warning” to Governments and the NHS.

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"The average diagnosis time for endometriosis remains at eight years – shockingly, it’s not changed in a decade. Action must be taken to drive this down. The post code lottery of access to healthcare practitioners who specialise in endometriosis needs to end."

She added: “Action is needed now, to ensure the next generation with endometriosis are not robbed of the future they deserve."

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Laura Collins

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