Endometriosis is a condition that affects one in 10 women in the UK, but is notoriously difficult to diagnose
Stomach pain and bowel issues are often brushed off as being down to diet. Yet, one doctor has warned that these symptoms can be a sign of a common yet notoriously tricky-to-diagnose condition in women.
Endometriosis, which affects around one in every 10 women aged 15 to 49, occurs when tissue similar to the womb lining grows in other areas, such as the ovaries and fallopian tubes.
Symptoms include lower tummy or back pain that worsens during periods, painful sex, diarrhoea, painful cramps, heavy bleeding, and infertility. Despite its severe impact, diagnosis times in England have soared to an average of eight years and 10 months, as per recent figures.
Dr Gareth Nye, a lecturer in Biomedical Science at the University of Salford, is urging women to speak out about their symptoms to get the right treatment. “Endometriosis develops when cells that resemble the part of the womb which sheds during menstruation (endometrium) is found in locations outside of the womb,” Dr Nye explained in an exclusive interview.
“This can occur in a number of places, but in 60% of cases it’s found in the ovaries, leading to fertility issues. Other uncommon sites include the bowel, kidneys and lungs, leading to irregular symptoms and a very difficult diagnosis.
“This tissue is found by the immune system, which thinks it’s harmful to the body and acts to remove it, leading to inflammation and pain. To make matters worse, this tissue is still acting like the endometrial lining, and so, as the monthly hormonal cycles occur, you can see growth of the tissues and even bleeding, which therefore makes symptoms inconsistent and variable from month to month, even week to week.”
According to the World Health Organisation, approximately 190 million people globally have endometriosis. Despite this, Dr Nye believes the real statistic is much greater due to underdiagnosis and a lack of awareness.
Taboos surrounding menstrual health conversations persist, too. One focus group study by Endometriosis UK highlighted that 47% of women aged between 16 and 54 would worry about telling their employer about needing sick leave due to endometriosis.
Reports also suggest that many women dismiss their symptoms as unworthy of further investigation, having been told that their pain is part of having a ‘normal period’ and therefore nothing to stress over.
Emma Cox, CEO of Endometriosis UK previously commented: “Myths such as ‘chronic period pain is normal’ or ‘you must have a low pain threshold’ manifesting in society, workplaces, schools, and even healthcare settings contribute to those experiencing symptoms being put off from seeking medical advice and contribute to diagnosis taking on average a shocking eight years.
“The impact of delayed diagnosis on people’s physical and mental health can’t be overstated. If undiagnosed, the disease may progress, and negatively impact people’s careers, education, relationships and all aspects of their life.”
Reflecting on these trends, Dr Nye asserts that major ‘changes in medical opinion’ must occur for women to receive accurate diagnoses and suitable remedies for endometriosis.
Although the disease is currently incurable, treatments such as pain relief medication and surgeries like hysterectomies are commonly suggested to manage symptoms. “There is a big push to educate healthcare workers with regards to women’s reproductive issues, which will hopefully make diagnosis more accessible and streamlined,” Dr Nye said.
“Women need to remain vocal about their journey to diagnosis and their unique symptoms to ensure the NHS gains a full insight into the issues at hand.
“Getting in contact with charities such as Endometriosis UK can provide backing and support, but ultimately, wholescale changes in medical opinion on women’s health issues need to change before we can begin to help, in addition to more funding and research into the conditions.”
NHS list of potential endometriosis symptoms
- Extreme fatigue
- Low moods and anxiety
- Difficulty getting pregnant
- Heavy periods where you need to change your pads or tampons every one to two hours, or you may bleed through to your clothes
- Severe period pain that stops you from doing everyday activities
- Pain when urinating or going to the toilet
- Pain in your lower tummy or back
- Pain after or during sex