New research has discovered that women suffering from endometriosis, who have experienced years of severe pain, are being dismissed by doctors and told that their symptoms are psychological, causing them to stop seeking treatment through the NHS.
A research conducted by professors at Manchester Metropolitan University discovered that women with the illness felt “gaslighted” by medical professionals because of their limited knowledge about the disorder.
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.
The condition known as endometriosis involves the growth of tissue resembling the lining of the uterus in other areas of the abdomen, causing significant pain. This condition impacts 1.5 million women in the United Kingdom. A study focused on 33 patients and their experiences with treatment and diagnosis found that doctors’ limited knowledge of the symptoms often resulted in women enduring years of pain before receiving a proper diagnosis. During this time, participants were frequently told that they were overreacting or that their pain was merely psychological.
A 27-year-old individual expressed feeling a strong sense of suspicion towards the healthcare system as a whole. They were often told that their pain was psychological, that they had a low tolerance for pain, or that their weight was the cause of their pain.
According to patients, doctors did not have sufficient medical knowledge to provide assistance for potential endometriosis cases or to recommend appropriate tests and procedures. Participants expressed emotions such as anger, fear, anxiety, frustration, and powerlessness, leading many to refrain from seeking additional care due to their negative experiences. The study found that “a lack of confidence in questioning medical professionals resulted in participants accepting the medical viewpoint and avoiding seeking help in the future.”
After being diagnosed, patients living in rural areas struggled to receive necessary care. One individual had to travel 52 miles in order to visit the nearest gynecological specialist clinic.
According to Dr Jasmine Hearn, the main hurdle is the doubt, rejection, and feeling of humiliation. Women are commonly expected to endure more pain than men, so when they seek medical help for severe pain, they are often desperate and in need of validation.
Dr. Hearn stated that the study revealed a necessity for doctors to change how they treat and investigate women’s pain.
According to Tracey Morgan, a 45-year-old veterinary nurse from Shrewsbury, it took nearly seven years for her doctors to take her endometriosis symptoms seriously. She recalls being repeatedly diagnosed with irritable bowel syndrome and cystitis, and being told that her period pain was just a normal part of being a woman. As her symptoms worsened, she found it difficult to work and became unreliable, which was out of character for her.
After some time, when a friend received a diagnosis with similar symptoms, Morgan returned to a female doctor and requested to be referred to a specialist. The doctor initially dismissed her and stated that it would be a waste of time for both of them, as well as the specialist. However, she eventually agreed to refer Morgan. This led to a diagnosis of endometriosis, with adhesions connecting her bowel and ovaries. She has undergone several surgeries to address the condition.
Unfortunately, there is currently no known remedy for endometriosis. The main goal of treatment is to address the symptoms, typically through minimally invasive surgery to eliminate excess tissue. While this approach may provide temporary relief from pain for several months or even years, the issue often reoccurs. In extreme cases, a complete hysterectomy may be suggested, but even that may not completely alleviate the condition.
The recent study determined that physicians require enhanced education and must alter their approach in addressing reports of symptoms that may indicate endometriosis.
Charlotte McArdle, the deputy chief nursing officer for patient safety and improvement at NHS England, emphasized the importance of addressing endometriosis and providing support to women who suffer from cyclical pain and its psychological effects.
The health service is dedicated to addressing the specific healthcare needs of women and is implementing specialized clinics for pelvic health. These clinics will bring together healthcare professionals who specialize in providing additional support for women with endometriosis.