Understanding Endometriosis
One in ten women suffer from endometriosis yet most people have never heard of it
What is Endometriosis?
Endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes but it can grow elsewhere like the bowels as well. The cause of endometriosis is not clear at the moment.
Symptoms vary and some women are affected much more severely than others.
Treatments for endometriosis include painkillers, hormone medicines, and, in the most extreme cases, surgery to remove the endometriosis tissue.
It is a very common condition affecting women in the UK, yet for many getting a diagnosis is traumatising and can take years.
Common Symptoms include
Pain during or after sex
Pain in your pelvic area (lower stomach and back) which gets worse when on your period
Longer periods
Feeling sick, constipated or having diarrhoea
Difficulty getting pregnant
Pain when peeing or pooing during your period
“I would get light headed and went anaemic but I just thought it was a bad period.”
Niamh Green on her experience
Niamh Green had extremely painful periods for years and it took her a long time to get a confirmed endometriosis diagnosis.
For years her periods affected her everyday life. She recounted how her endometriosis prevented her from attending university lectures, how she would be in so much pain she would have to crawl around and would struggle to get out of bed.
After her mum had heard women talk about their experiences with endometriosis she pushed Niamh to go to the doctor. Before getting referred to a specialist, Niamh had also been misdiagnosed with IBS.
Hear in Niamh's own words her experience in finally getting an endometriosis diagnosis.
Research into endometriosis and women's health issues:
Carla Cressy, founder and chief executive at The Endometriosis Charity, said: "Despite affecting more than one in ten women and AFAB individuals, Endometriosis is underfunded, under-recognised, under diagnosed, and poorly understood. It currently takes on average between 7-9 years from the onset of symptoms to achieving a diagnosis in the UK.
Diagnosis:
Along with the lack of understanding and research into endometriosis Carla explained that the diagnosis process is actually very tricky because there is not a simple diagnostic test and awareness of symptoms and risk factors are not that well understood by the public or the medical community.
Treatments:
There is not a known single treatment that suits everyone with endometriosis. However, there are various things and treatments people affected by the condition can try to manage their day-to-day symptoms.
Carla said: "Endometriosis symptoms can be helped with a combination of pain relief and anti-inflammatory medications, pelvic floor physiotherapy, dietary changes, limiting foods that are known for promoting inflammation and foods that make you feel unwell, and alternative therapies such as acupuncture. Hormone therapy treatments to limit, help regulate or temporarily stop your periods may also benefit. For more severe cases, treatment of the Endometriosis may need surgical intervention, if other treatments are not effective."
Research into women's health issues:
Allyah Abbas-Hanif who used to specialise in cardiology but switched to pharmaceutical medicine, quickly realised how underfunded research into women’s health was. This was and still is the area she wants to focus on but she found there was little interest in investing in these areas and women’s health research was classed as niche. She couldn’t believe this, considering women make up 51% of the UK’s population.
Based on her experience, Allyah considers research into women’s health issues, in particular in areas like endometriosis and PCOS as well as pregnancy, to be delayed and long overdue.
“The typical diagnosis time is seven to eight years for endometriosis. This is no small condition, we are talking about a woman living with and coping with daily pain, sometimes excruciating pain. There seems to be an idea that women can tolerate and put up with period related pain. Is this really fair? Is this how we want to be delivering our healthcare?”
There is also a huge amount of misdiagnosis. Endometriosis is often mistaken for other conditions which delays the treatment process.
Allyah said: "Endometriosis is a disease with a large variety of appearances, making it difficult to diagnose accurately. One-third to one-half of diagnostic laparoscopies for endometriosis will be negative, leading to missed pathology. Delayed diagnosis is a significant problem for women with endometriosis. The lack of symptoms and the uncertainty of disease progression make it challenging to determine the true prevalence of endometriosis. Misdiagnosis can also occur due to the overlap of symptoms between these conditions and other disorders. Additionally, the complexity of these conditions and the need for specialised knowledge contribute to the challenges in accurate diagnosis.
"Awareness by Healthcare Personel and women is also an important factor. Women may delay seeking advice and doctors may not piece symptoms together well.
"We are also not clear of the mechanism behind both conditions making diagnosis a challenge."
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