Drugged up and dismissed, two women tell Hannah Frankel about the fight to have the pain of endometriosis taken seriously
Ever since she was 11, Hilary Mantel has been wracked with chronic intermittent pain. But doctors said it was all in her mind and placed her on heavy psychotropic drugs.
Eventually, in her early twenties, Hilary diagnosed herself with endometriosis, but the damage was done. This highly painful condition is caused by tissue similar to the womb lining migrating around the body. And at the age of 27, she had early menopause thrust upon her when surgeons removed her womb and ovaries, along with part of her bowel and bladder.
"I would go to the university doctor complaining of nausea and pain in my legs but I was told the symptoms were psychosomatic," the acclaimed novelist, now 54, told The TES Magazine. "As a female student in the masculine discipline of law, I was considered neurotic and unable to take the strain."
Some 30 years on and women suffering with endo-metriosis are still struggling to get the help and expertise they need. The average time between a patient consulting a doctor with symptoms and receiving a diagnosis is eight years, according to Endometriosis UK. If the debilitating disease was exceptionally rare, the lack of knowledge would be more understandable. But an estimated one in 10 women are affected by endometriosis and there are two million women living in the UK today with the condition.
Their symptoms can be far-ranging, but two recurring themes are painful menstruation and sex. Hilary, in her memoirs Giving up the Ghost, documents her suffering - from pain throughout her body, nausea and fatigue.
Even after a hysterectomy, the oestrogen in her hormone replacement therapy caused her to put on five stone and once again she was immersed in severe pain. Hilary still suffers, but the condition is more controllable. She says she is lucky to have a career where she can work from home - something that cannot be said of teachers with endometriosis.
Frances Darlington, 59, is a retired teacher from West Yorkshire. Although she was 13 when she started getting symptoms, she was 27 before being diagnosed. The contraceptive pill helped to control her pain but she swapped one lot of symptoms for another when she started putting on weight and feeling sick. When she came off the pill, she collapsed with the pain.
"My friends thought I was having a miscarriage," says Frances. "The pain came in great spasms which took my breath away. I went from being this robust girl with plenty to say to a completely useless quivering wreck."
Frances, dosed up with strong medication, struggled through her first year of teaching, but by the second year, she was regularly passing out with the pain. By the third year, she was at breaking point; desperate for flexibility and understanding from her school and for a doctor to take her seriously and make a diagnosis.
"There is still institutionalised misogyny surrounding endometriosis," she says. "I talk to doctors who say they hardly ever see the condition. I tell them they do see it, they just don't know it."
Women with endometriosis are often misdiagnosed with fibroids, irritable bowel syndrome or pelvic inflammatory disease, even though an early diagnosis is key if fertility is not to be compromised www.shetrust.org.uk