Many who live with endometriosis anecdotally describe issues such as long waits for diagnosis, lack of information and feeling like a hypochondriac simply bad at coping with periods.
Now a 51-page report on women’s health by MPs indicates thousands of women suffering from endometriosis or fibroids feel dismissed, ignored and unable to access information and specialised treatment.
With 40% of women saying they had seen a doctor 10 times before being referred to a gynaecologist and 67% saying they obtained most of their information on the subject from the internet, the findings from the All Party Parliamentary Group on Women’s Health reveal a lack of awareness around what is considered ‘normal’ menstruation and what indicates a more serious issue.
And of the 2,600 women interviewed, many reported similar experiences when it came to having their symptoms taken seriously – 42% said they did not feel they had been treated with “dignity and respect” by doctors.
According to the NHS, endometriosis is estimated to affect around two million women in the UK, most diagnosed between the ages of 25 and 40. Endometriosis sees cells like the ones in the uterus growing elsewhere in the body, causing inflammation, pain and scar tissue. Symptoms include heavy and painful periods, painful sex, exhaustion and stomach and back pain. The condition can lead to associated mental health problems, such as depression, and fertility issues.
But as it can only be officially diagnosed with a surgical procedure, the paper indicates many people’s symptoms are being confused with other health problems and thus delaying appropriate referrals.
MP Paula Sherriff, chair of the group, said she was “shocked” by some of the stories.
“If women cannot even get the right diagnosis and information about treatments, how can they possibly decide what is the best care for themselves?
“Women deserve every opportunity to take control of their own healthcare and this group is striving to empower women so they have this potential.
“The statistics in this report show that women are all too often dismissed by healthcare professionals when discussing their symptoms and choices. The fact that almost 50% of women did not feel that they were treated with dignity and respect is appalling.”
One woman was quoted as saying: “When I raised concerns about my periods - which were so heavy I could barely leave the house – this barely seemed to register with the GP. It shouldn’t be a battle to see a gynaecologist.”
Another said: “At times I felt I was fighting a losing battle, my symptoms not always being believed and sometimes implications it was all in my head. Even after diagnosis I have struggled to understand what my options are for treatments, and the side effects or long-term health implications of different treatments might be.”
Current NICE guidelines say anyone suspected of having the condition should be considered for referral to a gynaecologist, and a referral should be offered if symptoms are severe or long-standing or if the patient has asked for one.
The group recommends official written information on the condition, its treatment and relevant resources should be widely available (it cites only 16% of NHS trusts currently providing written information about heavy bleeding and pelvic pain), improvements to the process by which women are diagnosed and treated, and improved education about menstrual health across the board – from secondary schools to GPs.
The Royal College of GPs responded with a statement pointing out the sample size was “small” and the symptoms “broad”, but said women’s health issues would always be taken “seriously”.
“In the case of endometriosis – the main focus of this report today – although this is a common gynaecological condition, it cannot be diagnosed in primary care as it requires a surgical procedure that must be conducted in secondary care. GPs often find themselves in an incredibly difficult position as the symptoms are so broad, and some are similar to other conditions, and so can only refer if they are sure endometriosis might be the underlying cause, or else secondary care would be unable to cope with demand.
“It is regrettable that so many women in this paper have reported a negative experience in obtaining a diagnosis – but the sample is small, and the report itself recognises that it is unlikely to be representative of all women’s experiences.
“Nevertheless, all of our patients should be treated with dignity and respect, and we would like them to be assured that whatever their symptoms, and whatever their condition, their GP will always take their condition seriously – and consider any physical, psychological and social factors affecting their health when formulating a treatment plan.”
The statement added: “The College has recognised women’s health as a clinical priority over the next 12 months and will shortly embark on a programme of work to develop resources to support GPs and our teams in the identification and treatment of women’s health issues. We look forward to working with a number of organisations, including the WHAPPG and other medical royal colleges, to inform this project.”
High-profile women have discussed their own experiences of endometriosis to raise awareness of the condition, including Lena Dunham, Star Wars’ Daisy Ridley, Dancing with the Stars’ Julianne Hough and Olympian Emily Seebohm.
Images: iStock / Rex