Millions with endometriosis face SEVEN-YEAR delay to get correct diagnosis, experts warn
IT takes women living with crippling endometriosis up to seven years to be diagnosed, experts have warned.
They said a new language toolkit must be developed to describe symptoms so doctors understand what their patients are going through.
Despite it affecting around 1.5 women in the UK, many women are just having to struggle through crippling pain on a monthly basis.
And experts at Manchester Metropolitan University say that’s because their descriptions of symptoms are routinely dismissed as being “normal” period pain.
Even when they use powerful metaphors to describe their torture, they’re still struggling to receive proper diagnoses and care, with one participant describing her pain as feeling “like I’m being stabbed by a thousand tiny men”.
We previously reported the story of Suzan Selçuk, who told us that she was “laughed at” by doctors who took 16 years to diagnose her condition which felt like “razor blades scraping inside” her.
Despite explaining how much agony she was in, she said that she was told that she “had IBS, that I was ‘weak’ and had a low pain tolerance, that I needed to take more painkillers, that it was in my head, – but never taken seriously.”
At 28, she’s been told that she’ll probably need to have a full hysterectomy.
Cécile Douillard had to endure the agony of endometriosis for three decades.
She told us that until a year ago, she felt like she’d been run over by a bus once a month – in so much pain that she could barely drag herself out of bed to make a cup of tea.
Symptoms of endometriosis
Endometriosis is where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body.
Each month, these cells react in the same way to those in the womb – building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
That can lead to infertility, fatigue, bowel and bladder problems, as well as really heavy, painful periods.
It affects one in ten women in the UK.
Symptoms include:
- Painful, heavy, or irregular periods
- Pain during or after sex
- Infertility
- Painful bowel movements
- Fatigue
The cause of endometriosis is unknown and there is no definite cure.
According to Endometriosis UK, it takes over seven years on average for women to finally receive a diagnosis.
It’s estimated that up to 50 per cent of infertile women has the condition.
Source:
According to results of a recent study, Cécile and Suzan are just two of the thousands routinely let down by doctors’ grasp of the condition.
The overwhelming majority of survey respondents found it difficult to adequately describe the extent of the pain they were suffering (85 per cent), felt that they were not believed by doctors (89 per cent), and that they would have benefited from different tools to help them describe their symptoms (84 per cent).
The group who felt they hadn’t been believed or found it hard to describe how much pain they were intended to have much longer average diagnoses times compared to women who didn’t have these experiences – suggesting that communication barriers are stopping from women receiving timely diagnoses.
Dr Stella Bullo, senior lecturer in linguistics at Manchester Metropolitan University, analysed the questionnaire responses of women with endometriosis about their experiences of medical consultations.
Dr Bullo, who has endometriosis herself, said: “Describing pain where an injury can be seen is difficult at the best of times, describing incapacitating pain that is invisible and linked to a natural process is extremely complex.
“Endometriosis is a very complex condition both to accurately describe and to diagnose, so we need collaborative work between linguistics, doctors and women who live with this condition to devise tools to help both women and doctors tackle endometriosis pain.”
Women who were used to describing their pain tended to use images of physical damage to describe what they were living with – like stabbing, scraping, and cutting.
Even then, the severity of pain isn’t taken seriously.
Dr Bullo added: “Successful communication relies on the recognition and use of a shared code, so a mismatch in assumptions can give rise to miscommunication.
“The use of metaphorical language, often a necessity, increases risks of this miscommunication, and therefore medical professionals being able to provide the most appropriate care to patients in fear and need.”
Dr Bullo now wants linguists, doctors and women with the condition to come together to create a “pain toolbox”, which would help communication.
It’d provide info on language choices, images and gestures which would help doctors understand the intensity, depth, pressure and abruptness of pain.
It’s part of a project the academic is working on, called the Language of Endometriosis, which is thought to be the first study to analyse the language that women with the condition use to describe their pain.
We previously reported back in December that a study carried out by Birmingham City University had found that millions of women with endometriosis were being routinely failed by doctors who misdiagnosed or dismissed them.
Previous studies have found that women wait longer for treatment than men who have the same severity of belly pain, and are prescribed less pain-relieving medicine for it.
A 2006 study found that many women who are diagnosed with endometriosis often delay in seeking help because they’ve been conditioned to think that their excruciating period pain is just normal.
And other findings have suggested that endometriosis could be a factor in up to half of all women undergoing fertility treatment, as scarring can distort the reproductive organs.
We pay for your stories! Do you have a story for The Sun Online news team? Email us at tips@the-sun.co.uk or call 0207 782 4368. You can WhatsApp us on 07810 791 502. We pay for videos too. Click here to upload yours