Yahoo News Staffordshire women with agonising condition waiting seven years for diagnosis
Women suffering an agonising medical condition which can lead to infertility are being left waiting more than seven years on average for a diagnosis, a report by Staffordshire councillors has revealed. And since the Covid pandemic, some women with endometriosis have endured a wait of almost nine years for diagnosis and treatment.
A women's health working group at Staffordshire County Council is now hoping to raise more awareness of the condition for men and boys as well as girls and women. Its report on endometriosis and the experiences of women affected by the condition includes recommendations to share findings with Keele University, raise awareness of women's health issues through education in schools and consider offering more support on women's issues, such as gynaecological conditions, at the county council's Family Hubs.
The report said: "Endometriosis is a condition where tissue that is meant to grow only in the uterus (endometrial tissue) grows elsewhere causing inflammation, bleeding and the formation of scar tissue. It is one of the most common gynaecological conditions affecting around 1 in 10 females of reproductive age, equating to around 1.5 million women nationally.
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"It can lead to infertility, chronic pain, and reduced quality of life. Laparoscopy is the only definite investigation to confirm the presence of endometriosis due to variance in clinical presentation.
Councillor Janice Silvester-Hall, who chaired the Women's Health Strategy working group, told the meeting that endometriosis was chosen to be the group's focus "because of the lack of profile it had". She added: "From the data that was provided, it often requires over eight years and countless GP appointments before a diagnosis can be made.
"There are still stigmas and taboos about what people will and will not discuss. I think that's one of the ways we can, in our own capacities, try and help, to make that less of a case.
"One of the recommendations is this report is shared with Keele University, as well as our district and borough councils. Another is to put it through onto the GPs' training syllabus, which it isn't at the moment - that was a recommendation that came through from a GP in particular."
Councillor Ann Edgeller, who was part of the working group, said: "You go through life learning, and as a woman at the age I am, I learned a lot from this. I didn't realise what an effect it could have on a woman's life and the health impact it has on them.
"Knowing that it takes eight years to get any sort of help is absolutely ridiculous. And when I look back at being in charge of two offices, with 30 women in each office many years ago, I didn't realise that this existed and the problems women were having when they came and said they were in pain."
Fellow working group member Jill Hood spoke of the experience of a woman she knew who had endometriosis. She said: "Endometriosis begins when females are quite young. They begin the trail of medical services by going along to their doctor - it's normally a male doctor and they're lucky if it is a female doctor - who tells them to get a grip.
"Then comes the prescriptions, the antidepressants, 'oh you're low' - no concern for the condition whatsoever. And it's demoralising for them.
"You would think once they have a child it ends. It doesn't, it gets much worse. But she's lucky. A lot of females suffering with the condition become infertile, they're not able to have a child and that is absolutely devastating.
"They're misdiagnosed, they're force-fed anti-depressants. What this group has done to help this cause is incredible - and to actually read it in print how it affects females."
Group member Councillor Julia Jessel said there had been a huge shift in society. "When I was younger it was 'take an aspirin and get on with it'", she added.
"Now our economy and society has a far different view of women. Women are an essential part of the workforce and if you feel like death warmed up it's very difficult to go to work, sit at a desk, stand in a shop or do anything if you're feeling really, really low.
"I think the shift in how our society operates has really reinforced that this is an issue that can't be swept under the carpet, doesn't just go by having a good walk and fresh air. It's not just an NHS issue - we should be raising this with Keele University to say can somebody start doing some research to find a cure for this."
Other members of the Health and Care Overview and Scrutiny Committee welcomed the report.
Councillor Charlotte Atkins said: "I think what it does is highlight the huge gap between health outcomes for men and women and the fact that women's diagnoses are frequently very long term before they're recognised as being an issue.
"That comes with many women not presenting themselves to a GP, getting on with a very busy life. It also identifies the deprivation gap as well, the fact that women living in more deprived environments find that they are doubly disadvantaged by their circumstances.
"We've known for a very long time that there is this gender gap in terms of health outcome. This, by focusing as it does, does identify that it's not just a national problem, it's a local problem as well.
"Hopefully it will mean that women are more demanding of their GPs and their health service, to ensure that women's diagnoses are prioritised so there is some sort of equality between outcomes for men and women."
Councillor Steven Norman said: "It was the most depressing read I've had on this committee - the awareness has got to be improved. I felt so bad that it is little-known and little work has been done on it.
"I know women have a raw deal. Hopefully this excellent work that has been done by the group is something that can be acted on and improved on.
Committee chairman Councillor Richard Cox said: "It is very sobering if you are a member of the opposite gender. I didn't know very much about it until I read this report.
"There is still a lot of learning that we can all be doing. I think we should add to the recommendation to share the report with Keele University for research to be conducted."
