Women with endometriosis who have endured years of excruciating pain are being “fobbed off” by doctors and told their symptoms are “all in their head”, leading them to give up seeking NHS treatment, new research has found.
A study carried out by academics at Manchester Metropolitan University found women with the disease felt “gaslit” by doctors due to their lack of understanding of the condition.
The paper, due to be published in the Journal of Health Communication later this month, also found that treatment was subject to a postcode lottery. Patients in rural areas reported travelling for hours to access a specialist with full training in the complex gynaecological condition.
Endometriosis is a painful condition in which tissue similar to the lining of the womb grows around other organs inside the abdomen. It affects 1.5 million women in the UK. The study looked at the experiences of treatment and diagnosis of 33 patients and revealed how doctors’ lack of understanding of the symptoms meant women often spent years in pain before their condition was diagnosed. During this period participants were told they were exaggerating their symptoms, or their pain was dismissed as psychological.
As one 27-year-old participant reported: “I feel a lot of mistrust towards the healthcare system in general, simply because I have been told that the pain was in my head, that I must have a low pain threshold or that I was in pain because I was fat.”
Patients also reported that doctors lacked the medical training to offer support for suspected endometriosis, or to refer patients for the correct tests and procedures. Participants said they felt angry, fearful, anxious, frustrated and powerless, with many choosing not to seek further care because of the way they had been treated. The study concluded that “a lack of confidence to challenge medical experts meant that participants were likely to accept the medical discourse and avoid seeking help in future”.
When patients received diagnosis, those living outside cities found it very difficult to access care. One participant had to make a journey of 52 miles to attend the clinic of their nearest gynaecological specialist.
Dr Jasmine Hearn, senior lecturer in health psychology at Manchester Metropolitan University and lead author of the paper, said: “The biggest challenge is the disbelief, the dismissal and the sense of shame and embarrassment. Women are expected to tolerate much higher pain levels than men in general, so when women go [to the GP] with extreme pain, they are at that point of desperation and need to be taken seriously.”
The study exposed a need for change in the way women’s pain was treated and investigated by doctors, Dr Hearn added.
Tracey Morgan, 45, a veterinary nurse from Shrewsbury, said it took almost seven years for GPs to take her endometriosis symptoms seriously. “I was being told I had irritable bowel syndrome and cystitis, and in terms of period pain I was told ‘suck it up buttercup, every woman goes through that’,” she explains. “I got to the stage where I was having more and more time off work and I was really struggling. I was becoming unreliable and that wasn’t me at all.”
Eventually, when a friend was diagnosed with similar symptoms, Morgan went back to a female GP and insisted on a referral to a specialist. “She said: ‘You’re wasting your time, you’re wasting my time and if I refer you, then you’re wasting their time, but I’m going to refer you so that you just stop.’” Morgan’s referral led to a diagnosis of endometriosis including adhesions connecting her bowel and ovaries, and she has since had multiple surgeries to treat the condition.
There is currently no cure for endometriosis and treatment is designed to manage the symptoms, often by keyhole surgery to remove or destroy excess tissue. These procedures may give months or years of pain relief, but the problem often recurs. In the most severe cases, a full hysterectomy may be recommended, but even that may not fully resolve the condition.
The new paper concluded that doctors needed better training and to change the way they handle reports of symptoms that suggest possible endometriosis.
Charlotte McArdle, deputy chief nursing officer for patient safety and improvement at NHS England, said: “The NHS takes endometriosis extremely seriously and it is essential that staff support women experiencing cyclical pain, as well as the [associated] psychological effects.
“The health service is committed to meeting women’s individual healthcare needs and is rolling out dedicated pelvic health clinics – bringing together specialist healthcare staff – to provide further support for women living with endometriosis.”
