An Inquiry by the APPG on Endometriosis has highlighted the devastating impact endometriosis can have on all aspects of a person’s life, and urges Ministers to take bold action to ensure those with endometriosis have access to the right care at the right time.

The inquiry surveyed over 10,000 people with endometriosis, interviewed healthcare practitioners and those with the condition about their experiences, and found that average diagnosis times for endometriosis had not improved in over a decade - with an average 8.5 years before diagnosis in Scotland.

Endometriosis, which affects one in 10 women in the UK, is a chronic and sometimes debilitating condition which can cause intense pain, heavy periods and infertility.

It's the name given to the condition where cells similar to the ones lining the womb (the endometrium) are found elsewhere in the body.

Each month these cells react in the same way to those lining the womb, building up and then breaking down and bleeding.

Unlike the cells lining the womb that leave the body as a period, this blood has no way to escape, which can cause inflammation, pain and the formation of scar tissue.

Of the more than 10,000 people who took part in the All-Party Political Group survey,  58 per cent of people visited the GP more than 10 times before diagnosis and 53 per cent went to A&E with symptoms before diagnosis.

READ MORE: Nicola Love: What lockdown has taught me about endometriosis

In addition, about 90 per cent said they would have liked access to psychological support but were never offered it, with 35 per cent having a reduced income due to endometriosis.

However, despite being so common, and severe chronic pelvic pain being the most common symptom, the APPG's survey showed diagnosis time currently takes on average 8.5 years in Scotland and Northern Ireland, nine years in Wales and eight years in England.

In Scotland, three endometriosis specialist centres currently exist and were planned to provide specialist endometriosis coverage for the whole of Scotland.

However, the report has found that these centres are currently being commissioned as local services and for local capacity, making it difficult for those suffering from endometriosis to to get a referral if they live in a different health board area.

For some, this can mean no access to specialist treatment even if suffering from deep endometriosis.

According to the report, the Scottish Government’s 2019 – 2020 Programme for Government Women’s Health Plan, work being led by the Chief Medical Officer’s Directorate of the Scottish Government, is currently considering the funding of the three specialist endometriosis centres in Scotland to provide a national service, along with reducing diagnosis time, improved care pathways, and improving menstrual health and endometriosis care throughout Scotland.

Lack of awareness of endometriosis was also a major theme highlighted throughout the Inquiry, and covered three key areas.

Firstly, a lack of awareness of what a normal menstrual cycle is, a lack of public awareness of endometriosis, and an apparent lack of awareness of symptoms with some healthcare practitioners - resulting in those with endometriosis having to make multiple GP visits, gynaecology visits, A&E visits, and in investigations and sometimes surgery for other conditions.

In an oral evidence session, one participant, Shaunee, explained why it was so important to have menstrual wellbeing taught in schools.

She said: “My school years suffered massively due to endometriosis, but because I wasn’t taught any different at school, I assumed it was normal.

“I thought it was part of growing up and being a woman. I missed out on school days and my education suffered massively.

“It wasn’t until years later that I trained as a midwife that I sought help.

“It’s vital menstrual wellbeing is taught in schools across Scotland, so that young people do not grow up suffering in silence thinking what they are experiencing is normal”.

Commenting on the report, Emma Cox, CEO of Endometriosis UK said: “This report should be the final warning to Governments and the NHS that action must be taken on endometriosis.

"Implementing the recommendations in the report will reduce diagnosis time and ensure access to a minimum level of treatment and support for all those with endometriosis – saving on GP, hospital and A&E visits, as well as enabling those with the disease to live the productive lives they want.

“The NICE Guideline produced in 2017 gives the baseline for care, but despite being adopted across the UK, it has not been implemented; it needs to be.

“The outbreak of COVID-19 has presented further challenges to the NHS as well as those with endometriosis. With NHS services resuming across the UK, the Government and NHS have the opportunity to take note of the recommendations within this report to streamline care pathways and improve services for endometriosis, both saving resources and providing improved care and support.

“The average diagnosis time for endometriosis remains at 8 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.

"Implementing effective processes within the NHS will help healthcare practitioners support diagnosis and get those with endometriosis symptoms to the right place, in hospitals with the right expertise, at the right time.

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

Speaking to The Nine, SNP MP Hannah Bardell, who is a member of the all-party group who conducted the inquiry, says waiting an average of over eight years for a diagnosis isn’t good enough.

She said: “We have uncovered some pretty chilling information and experiences.

“The women I spoke to, their experiences were having to take stronger painkillers for longer periods of time.”

“What we talk about in this report are practical steps that can be taken by all governments, and it’s a cross-party approach, and that’s really important.

“There is a real genuine determination, by all political parties, to change the way this is done.”

She added: “The Scottish Government, as are other governments, doing their very best, as are medical professionals, but we’ve got some structural issues here.

“A lot of the sufferers that we spoke to spoke about the stigma, about being ridiculed, and that’s not good enough.

“We have lots of excellent health professionals leading the way, but we need better education in schools, and in medical professionals, and we need better research.

“This is a pivotal moment, I think enough is enough, and it’s important to face up to the challenges and give hope to sufferers that we are going to find a way forward.”