A charity supporting endometriosis sufferers say they hope a Westminster-led inquiry into the condition will deliver “real change” to the 1.5 million women in the UK with the condition.
As the UK Government opened its inquiry into investigating the challenges faced by endometriosis sufferers last month, we revealed our own series into the harsh realities of those living with the chronic health condition.
Sufferers shared some of their heartbreaking experiences with us, including feeling on the verge of suicide and giving up on long-held dreams of having their own family.
The long-term condition sees tissue similar to the lining of the womb start to grow in other places, such as the ovaries and fallopian tubes.
Today marks the last day patients can fill out a survey as part of the All Parliamentary Party Group’s inquiry into the condition, with a series of recommendations to follow later this year.
Endometriosis UK, the leading UK charity for those suffering from the condition, say they hope the inquiry will provide a welcome opportunity for the government and NHS to “get real” about the impact the condition has on the one in 10 women it affects.
Lauren Marcella, from Aberdeen, took part in the survey and encouraged friends and the city’s endometriosis community to take part.
The 27-year-old has faced a 16-year battle with endometriosis, which started when she was aged just 11.
It would lead her to experience suicidal thoughts and force her to take time off school and work over the years.
She said: “I had a lot of women reach out to me after the piece went out.
“A lot of them are struggling just now as their hospital appointments and surgeries have been cancelled due to coronavirus.
“I hope that waiting times for appointments will be reduced and better aftercare will be put in place.
“After you do get a diagnosis you are left and with no guidance or advice on how this will continue to impact your life.
“I also hope that the medical community outside of gynaecology are given training and are armed with more information of the signs to look out for.”
Vicky Chapman, who set up the Endometriosis UK Dundee Support Group in January last year, also took part in the survey.
The 31-year-old, from Arbroath, said: “I did take part in the survey and would encourage anyone affected by endometriosis to take the opportunity to do so, whether their condition is well managed or not.
“It’s only through completing surveys that change will happen.
“There is also a petition to get menstrual wellbeing onto the school curriculum in Scotland.
“Anyone can sign this (any gender, based anywhere). By getting this added, hopefully, young people and their parents will be better informed and be able to watch out for the warning signs of these conditions and not just think ‘it’s their normal’ like I did for so many years.”
A spokesman for Endometriosis UK said: “This inquiry is a welcome opportunity for the Government and NHS to get real about the impact of endometriosis on individuals and society, and to take it seriously.
“The inquiry provides the government with the opportunity to deliver recommendations for much needed improvements for the diagnosis, treatment and support of 1.5 million women living with the disease – and reduce the suffering of future generations.
“We hope the inquiry will deliver real change for people affected by endometriosis and shape the way care is delivered in the future.
“Without investment in research, a reduction in diagnosis time and better access to pain management, women will continue to face huge barriers in accessing the right treatment at the right time.”
