Endometriosis – Giving a voice to 2 million sufferers

The two million endometriosis sufferers in this country have finally been given a voice, thanks to the All-Party Parliamentary Group on Women’s Health report ‘Informed Choice? Giving women control of their healthcare’.

The in-depth inquiry has found that across the UK women face a struggle to have their symptoms recognised, with their problems often being dismissed as ‘in their heads.’

The group surveyed over 2,600 women and found unacceptable treatment of women with endometriosis and fibroids, two of the most common gynaecological conditions that affect a huge number of women.

The report highlights the chronic lack of awareness among health professionals about these common conditions and sets out a series of recommendations to bring about positive change to ensure women can access better diagnosis and treatment options. You can read the report in full here.

Endometriosis is a debilitatingly painful disease where womb tissue grows outside of the uterus often causing infertility, painful intercourse, and sometimes sees desperate young women seek hysterectomies to end their suffering, only for their symptoms to return.

Key organisations and support groups listening to the APPG Report on Women’s Health

Paula Sherriff MP leading the Group says, ‘This Group aims to shine a light on little known conditions that have a huge impact, helping to bring women’s voices to Parliament and to make a change.

The fact that almost 50 per cent of women did not feel that they were treated with dignity and respect is appalling.’

Half the women questioned reported it took ten visits to their GP before they were correctly diagnosed. Endometriosis patients have spoken out in the report about the impact that endometriosis has had on their lives saying, ‘We have been silenced for too long’.

Marie Turner first started experiencing extreme pain in her first year at university. It took 7 years of misdiagnoses, doctors’ appointments, hospital visits and surgery before she was given a diagnosis of stage 4 endometriosis. She had adhesions on her left ovary, her bladder and uterus were stuck together via her Pouch of Douglas, and she is still in pain.

She has been told to have children in the next 5 years or to have Prostrap, a menopause injection which has been proven in many studies to have no effect on endometriosis. Finally receiving specialist care, Marie says, ‘All it would have taken is just one person to believe me. One person. I’ve lost 7 years to pain.’

Wellbeing of Women is one of the very few bodies funding research to find an effective new treatment to end the horrific suffering of endometriosis patients.

Chief Executive, Tina Weaver, says ‘Wellbeing of Women has been fighting the corner of the women suffering from this cruel disease. They not only have to deal with crippling pain which in many cases means losing their jobs and relationships, but they are also made to feel that they are making a fuss about nothing. It dominates and destroys their lives. We’re proud to be supporting several exciting projects which we believe could lead to the first effective new treatments in years.

Existing treatments for endometriosis are harsh, have hardly progressed in 50 years and can have life-changing side effects such as early menopause. New treatments are urgently needed and that’s why we are prioritising funding research to find better treatments like the work Professor Andrew Horne is carrying out In Edinburgh’.

Read more about the research here.

With thanks to the APPG on Women’s Health for photos used in this article.