MORE than 13,500 women have taken part in BBC research revealing the devastating effect of endometriosis.
Half said they had had suicidal thoughts, and many said they rely on highly addictive painkillers.
Most also said endometriosis – involving painful periods – had badly affected their education, career and relationships.
MPs are to launch an inquiry into women’s experiences of endometriosis following the research.
Thurrock resident and Endometriosis sufferer Sarah Smallcombe has campaigned to raise awareness regarding the condition for many years. Sarah welcome the inquiry.
Sarah said: “It’s a wake up call to the Government and the NHS that more needs to be in terms of research. Women are having to wait on average 7.5 years for a diagnosis.
“These shocking results show that nearly all women surveyed have said their mental health had been affected along with their career and relationships. This is not acceptable. The key message here is to advocate for yourself and if you think something is wrong, please go to your GP”.
Women with the condition answered questions on how the condition has affected them. The charity Endometriosis UK helped gather the responses.
The condition affects one in 10 women and, as well as extremely heavy periods, can cause debilitating pain and sometimes infertility.
Anna Turley MP, a member of the All-Party Parliamentary Group for Endometriosis which will carry out the inquiry, said: “It wasn’t until I was hospitalised and had the diagnosis that I realised how little attention endometriosis receives, how limited research funding is, and how many women are misdiagnosed.”
She said the data gave “millions of affected women a voice” and the APPG would be calling on the government to act.
What is endometriosis?
It is where tissue like that in the lining of the womb grows elsewhere in the body – often around the reproductive organs, bowel and bladder.
Like the womb lining, the tissue builds up and bleeds every month, but with no way to escape the body, the blood is trapped, leading to inflammation, pain and formation of scar tissue
For some women there are no symptoms, but for others it is debilitating and can cause• chronic pelvic pain, painful sex, painful bowel and bladder movements, fatigue and difficulties getting pregnant
There is no cure, but treatments can reduce symptoms
They include hormone treatment, pain relief and surgery – including hysterectomy
In the UK it takes an average of 7.5 years to be diagnosed
Emma Cox, CEO of the charity Endometriosis UK, which helped gather the women’s testimonies, said: “It cannot be overstated the devastating impact this condition is clearly having on people’s physical and mental health.
“Without investment in research, a reduction in diagnosis time – which averages at a shocking 7.5 years – and better access to pain management, women will continue to face huge barriers in accessing the right treatment at the right time.”