Women with endometriosis who have endured years of excruciating pain are being ‘fobbed off’ by doctors and told their symptoms are ‘all in their heads’, causing them to stop seeking NHS treatment, new research has found.
A study conducted by academics from Manchester Metropolitan University found that women with the disease felt ‘gaslit’ by doctors due to their lack of understanding of the condition.
The article, which will be published in the Journal of Health Communication later this month it also emerged that the treatment was subject to a postcode lottery. Patients in rural areas reported having to travel for hours to access a specialist with full training in the complex gynecological condition.
Endometriosis is a painful condition in which tissue similar to the uterine lining grows around other organs in the abdomen. It affects 1.5 million women in Britain. The study looked at the experiences of treatment and diagnosis of 33 patients and revealed how doctors’ lack of understanding of symptoms often left women in pain for years before their condition was diagnosed. During this period, participants were told that they were exaggerating their symptoms, or that their pain was dismissed as psychological.
As one 27-year-old participant reported, “I feel a lot of distrust toward the health care system in general simply because I was told that the pain was in my head, that I should have a low pain threshold, or that I was in pain because I was fat.”
Patients also reported that doctors did not have the medical training to provide support for suspected endometriosis, or to refer patients for appropriate tests and procedures. Participants said they felt angry, anxious, fearful, 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 not seek help in the future.”
When patients were diagnosed, those living outside cities found it very difficult to access care. One participant had to travel 85 kilometers to get to the clinic of the nearest gynecological 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, dismissal and the feeling of shame and embarrassment. Women are expected to tolerate much higher levels of pain than men in general, so when women go (to the doctor) in extreme pain they are at a point of desperation and should be taken seriously.”
The study highlighted the need for change in the way women’s pain was treated and investigated by doctors, added 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 told I had irritable bowel syndrome and bladder infections, and in terms of period pain I was told, ‘suck it up, every woman goes through that,’” she explains. “I reached the stage where I had more and more free time and I was really struggling. I started to become unreliable, and it wasn’t my fault at all.”
When a friend was diagnosed with similar symptoms, Morgan eventually 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, you’re wasting their time, but I’m going to refer you so you just stop.’” Morgan’s referral led to a diagnosis of endometriosis, which includes adhesions that cause her connect her intestines and ovaries, and she has since undergone multiple surgeries to treat the condition.
There is currently no cure for endometriosis and treatment is designed to control symptoms, often using keyhole surgery to remove or destroy excess tissue. These procedures can provide pain relief for months or years, but the problem often returns. In the most severe cases, a complete hysterectomy may be recommended, but even that may not completely resolve the condition.
The new paper concluded that doctors needed better training and to change the way they handle reports of symptoms indicating possible endometriosis.
Charlotte McArdle, deputy head of nursing for patient safety and improvement at NHS England, said: “The NHS takes endometriosis extremely seriously and it is essential that staff support women who experience cyclical pain, as well as the (associated) psychological effects.
“The health service is committed to meeting the individual health care needs of women and is rolling out dedicated pelvic clinics – bringing together specialist healthcare staff – to provide further support to women with endometriosis.”