Anyone who suffers from endometriosis will know how debilitating and painful the condition can be.
It is a worrying prospect that a doctor could dismiss endometriosis symptoms as simply PMS. But a report, commissioned by a group of UK politicians, confirms that this has happened to some sufferers.
One of the most shocking statistics to emerge is that 40 percent of sufferers had seen a doctor 10 times before being referred to a gynaecologist.
Endometriosis is estimated to affect around two million women in the UK, with most sufferers aged between the ages of 25 and 40.
Endometriosis is a disorder in which tissue that normally lines the inside of the uterus — the endometrium — grows outside it.
It most commonly involves the ovaries, fallopian tubes and the tissue lining the pelvis, and causes 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.
The report, Informed Choice? Giving women control of their healthcare, was compiled by The All-Party Parliamentary Group on Women's Health, who were concerned about how patients with endometriosis and fibroids were being treated by doctors.
The results indicate that hundreds of women had their symptoms dismissed as PMS and were unable to access proper guidance and treatment.
Really pleased to be at @APPG_WH with @paulasherriff, launching an important report on physical, mental and gynaecological health pic.twitter.com/v30WMXjZAp
— APPG SRH (@APPGSRH) March 27, 2017
In a survey of 2,600 sufferers, 42 percent said they did not feel they had been treated with “dignity and respect” by doctors.
Meanwhile, 62 percent of sufferers were not satisfied with the information they received about treatment options for endometriosis and fibroids. And almost 50 percent of women with endometriosis and fibroids were not told about the short-term or long-term complications from the treatment options provided.
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?" she asked.
Great discussion around #endometriosis and #fibroids at today's @APPG_WH event! Inspiring words from @paulasherriff! #InformedChoice
— Philip C Baldwin (@philipcbaldwin) March 27, 2017
One woman said she was suffering from periods so heavy she could barely leave her house, yet her GP didn't appear worried by this.
"When I raised concerns about my periods – 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.”
A HUGE thank you @paulasherriff for leading the @APPG_WH #endometriosis Inquiry. The report recommendations are a catalyst for change Xx pic.twitter.com/ppSrU2SBx8
— EndoHappy (@_EndoHappy) March 28, 2017
The group are recommending a number of measures to be implemented, in order to help sufferers. These include information leaflets, encouraging best practice, and more education about menstrual health.
They recommend clinics distribute information leaflets with information on the condition and treatment options. They want these leaflets to be endorsed by the relevant clinical bodies and patient groups.
67 percent of women surveyed had to research their condition on the internet, so information leaflets could really help other sufferers.
Excited to hear @paulasherriff launch the @APPG_WH report on Informed Choice #endometriosis #fibroids pic.twitter.com/nSU93OGu6u
— Emma Cox (@msemmacox) March 27, 2017
They also want an endorsed best practice pathway introduced – this would mean that women would be streamlined more quickly into the right care, saving costs from unplanned admissions and ensuring women get access to all treatments.
Education on menstrual health from secondary school is also vitally important, as the group found some women put up with symptoms and pain for a long time as they didn't realise it was abnormal.
The results of the report are due to be presented in parliament today (March 27).
We hope the concerns of these women will be acknowledged and taken seriously - they have been ignored for too long.
