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Endometriosis charities report 'enormous response' after Guardian revelations Endometriosis charities report 'enormous response' after Guardian revelations
(35 minutes later)
Endometriosis charities said they have been overwhelmed by the public response to the Guardian’s revelations of the scale of a disease that affects one in 10 women and the hidden suffering that it causes.Endometriosis charities said they have been overwhelmed by the public response to the Guardian’s revelations of the scale of a disease that affects one in 10 women and the hidden suffering that it causes.
The charities said women got in touch to tell them of their experience with the disease, that many were unable to find out what was wrong with them or to get good treatment once they had been diagnosed. The charities said women got in touch to tell them of their experience with the disease, with many reporting that doctors were unable to find out what was wrong with them, or to get good treatment once they had been diagnosed.
Related: Endometriosis: hidden suffering of millions of women revealedRelated: Endometriosis: hidden suffering of millions of women revealed
“There’s been an enormous response,” said Lone Hummelshoj, chief executive of the World Endometriosis Research Foundation and secretary general of the World Endometriosis Society. “The response we have had from women with the disease has been outstanding. It confirms everything you say.” “There’s been an enormous response,” said Lone Hummelshoj, the chief executive of the World Endometriosis Research Foundation and secretary general of the World Endometriosis Society. “The response we have had from women with the disease has been outstanding. It confirms everything you say.”
Jane Hudson Jones, chief executive of Endometriosis UK, said: “It has been incredibly busy. We have had lots of calls. It has been a really positive response. There was a lot of excitement and general relief that there is a wider awareness of endometriosis.” Jane Hudson Jones, the chief executive of Endometriosis UK, said: “It has been incredibly busy. We have had lots of calls. It has been a really positive response. There was a lot of excitement and general relief that there is a wider awareness of endometriosis.”
Its website registered 28,000 views over two days after the stories appeared on Monday, of which 73% were new visitors. Most were looking at the page explaining the symptoms of endometriosis, suggesting they could be women who have not been diagnosed.Its website registered 28,000 views over two days after the stories appeared on Monday, of which 73% were new visitors. Most were looking at the page explaining the symptoms of endometriosis, suggesting they could be women who have not been diagnosed.
Related: Endometriosis: 20 things every woman (and every doctor) should knowRelated: Endometriosis: 20 things every woman (and every doctor) should know
“It has been a really fantastic response – really positive and lots of people have been saying it is about time,” said Hudson Jones.“It has been a really fantastic response – really positive and lots of people have been saying it is about time,” said Hudson Jones.
Oona King, former Labour MP, one-time London mayoral candidate and now Lady King, on Friday told the Guardian about her own experience of the disease, which has tormented her since she was 11 and made her infertile. Oona King, the former Labour MP, one-time London mayoral candidate and now Lady King, on Friday told the Guardian about her own experience of the disease, which has tormented her since she was 11 and made her infertile.
She spoke of how she had been stretchered out of the House of Commons on one occasion and had once been forced to crawl across the floor in the party offices to try to reach her desk. Four years ago, she had found that using one of the contraceptive pills freed her from pain. “My husband worried it may increase my risk of cancer, but I would prefer to die 10 years earlier than live with the periods I have,” said King, 47. She spoke of how she had been stretchered out of the House of Commons on one occasion and had once been forced to crawl across the floor in the Labour party offices to try to reach her desk. Four years ago, she had found that using one of the contraceptive pills freed her from pain.
“My husband worried it may increase my risk of cancer, but I would prefer to die 10 years earlier than live with the periods I have,” said King, 47.
Related: Oona King on endometriosis: 'It’s a disability that only appears one week in four'Related: Oona King on endometriosis: 'It’s a disability that only appears one week in four'
Endometriosis occurs when tissue similar to the lining of the womb is found elsewhere – most commonly in the abdomen, ovaries, in the recto-vaginal septum, bladder and bowel. That tissue behaves like the lining of the womb, bleeding every month, and can cause cause severe and chronic pain, as well as infertility.Endometriosis occurs when tissue similar to the lining of the womb is found elsewhere – most commonly in the abdomen, ovaries, in the recto-vaginal septum, bladder and bowel. That tissue behaves like the lining of the womb, bleeding every month, and can cause cause severe and chronic pain, as well as infertility.
On Monday the Guardian revealed the toll the disease takes of one in 10 women of reproductive age, some 176 million women worldwide. Many suffer for up to 10 years before they get a diagnosis and say they are not always believed. Some have been told by doctors: “It is all in your head.” On Monday, the Guardian revealed the toll the disease takes of one in 10 women of reproductive age – 176 million women worldwide. Many suffer for up to 10 years before they get a diagnosis and say they are not always believed. Some have been told by doctors: “It is all in your head.”
A huge number of readers contacted the Guardian to share their stories. Many had struggled to hold down jobs in the face of uncomprehension from colleagues who knew nothing about the disease. “I’m a well paid, well educated and confident woman. Yet I struggled to convey to anyone how ill I was, or how much I was suffering. I felt guilty about missing work – as if taking time off ‘just for period pain’ was somehow skiving,” said one. A huge number of readers contacted the Guardian to share their stories. Many had struggled to hold down jobs in the face of uncomprehension from colleagues who knew nothing about the condition. “I’m a well-paid, well-educated and confident woman. Yet I struggled to convey to anyone how ill I was, or how much I was suffering. I felt guilty about missing work – as if taking time off ‘just for period pain’ was somehow skiving,” said one.
Related: What is endometriosis? A visual guideRelated: What is endometriosis? A visual guide
“Nobody was sympathetic, not even other women, who thought I was exaggerating,” said another. “I had to give up working in my 40s as nobody wants to employ somebody who can’t work for three or four days a month. It used to feel like I had a pelvis full of razor blades.“Nobody was sympathetic, not even other women, who thought I was exaggerating,” said another. “I had to give up working in my 40s as nobody wants to employ somebody who can’t work for three or four days a month. It used to feel like I had a pelvis full of razor blades.
“I’m 58 now and it certainly blighted my whole life. I often think that if men suffered with something that caused agonising pain for hours, and sometimes days every month and for years, people would not dismiss it.”“I’m 58 now and it certainly blighted my whole life. I often think that if men suffered with something that caused agonising pain for hours, and sometimes days every month and for years, people would not dismiss it.”
Many said that even their doctors had not understood or not felt able to help. “I was a health scientist, married to a hospital doctor, and a busy mum to three lively under-10-year-olds when I battled with endometriosis. Despite being surrounded by medical professionals, it took three years of utter misery before my problem was taken seriously,” said another.Many said that even their doctors had not understood or not felt able to help. “I was a health scientist, married to a hospital doctor, and a busy mum to three lively under-10-year-olds when I battled with endometriosis. Despite being surrounded by medical professionals, it took three years of utter misery before my problem was taken seriously,” said another.
The pain took over her life, she said. “I sometimes felt life wasn’t worth living. My husband tried to be sympathetic, but since the four experts were taking the problem lightly, he wasn’t as concerned as he ought to have been, and freely admits that now.”The pain took over her life, she said. “I sometimes felt life wasn’t worth living. My husband tried to be sympathetic, but since the four experts were taking the problem lightly, he wasn’t as concerned as he ought to have been, and freely admits that now.”
Related: Women discuss endometriosis: 'No one believed I could be in such pain from a period'Related: Women discuss endometriosis: 'No one believed I could be in such pain from a period'
Scientists and support groups say funding for more research is urgently needed. A team at Oxford University is investigating the genetic profile of those with the disease, in the hope of finding better ways to treat it. Too little is yet known about the causes. The only treatments are painkillers and hormonal drugs, some of which throw women into early menopause, and surgery to remove the tissue.Scientists and support groups say funding for more research is urgently needed. A team at Oxford University is investigating the genetic profile of those with the disease, in the hope of finding better ways to treat it. Too little is yet known about the causes. The only treatments are painkillers and hormonal drugs, some of which throw women into early menopause, and surgery to remove the tissue.