Psychological wellbeing practitioner, Raakave Yoganathan, summarises her Masters dissertation completed at City University London, which qualitatively explored the experience of women with endometriosis in the UK.
Highlights
· Endometriosis has symptoms similar to other conditions thus leading to misdiagnosis and ultimately slowing down the process of receiving support
· The condition has a significant impact on various aspects of life for young girls, including school, work and relationships
· Education for healthcare professionals is necessary so appropriate diagnoses and support can be provided in a timely manner
There is a big elephant in the medical room that is endometriosis. Endometriosis is characterised by ‘the presence of tissue resembling endometrium (the lining of the uterus) outside the uterus. It causes a chronic inflammatory reaction that may result in the formation of scar tissues within the pelvis and other parts of the body’.[1] In more recent years this has received more awareness thanks to the role of social media platforms and high-profile individuals from the likes of Chrissy Teigan and Mandy Moore, opening up about their personal experience with endometriosis.
There are lists of symptoms experienced with endometriosis varying from pelvic pain, pain when ovulating, painful bowel movements, pain when passing urine, bleeding from the bowel, symptoms of irritable bowel and fertility issues to name a few.[2] Despite around 176 million women who are currently thought to be living with endometriosis worldwide; with an estimate of 1 in 10 women having this condition in the UK[3], currently getting diagnosed with endometriosis in the UK takes a considerable amount of time, averaging 7.5 years. This long waiting time inevitably leads to individuals experiencing difficult and quite stressful journey to getting the diagnosis. The cost of endometriosis to the UK’s healthcare system and from the loss of work was estimated to be around £8.2 billion per year. Despite its estimated prevalence, social and individual costs, policies to support women living with endometriosis appear to be non-existent. Far more interestingly, very little research has examined women's experiences of endometriosis, particularly across different ages. While we know that endometriosis has significant psychosocial impacts for women, there is little insight into the specificity of these experiences for young women aged 18-25, who are at a transitional phase of life and whose experiences might differ significantly than older women. This is what led me to delve into the study: ‘Understanding Young Women’s Experience of Living with Endometriosis in the UK: A Qualitative Study’
Aim of the study
The aim of the study I proposed was to understand the experience of young women living with endometriosis.
Method
A total of fourteen participants between the ages of 18-28 were obtained across the UK through purposive sampling. I contacted potential participants through social media platforms that were visibly associated with endometriosis organisations. All were interviewed between May and June of 2020 either through telephone or video conversations. In order to establish a better understanding of endometriosis among young women, a qualitative research design was employed. This approach helped draw out some key findings that are outlined in the next section.
Findings
I was able to draw some key findings from the study that were considerably significant in outlining the experience of living with endometriosis for these young women, as well as establishing the wider contextual impact this could have around our understanding of endometriosis moving forward. Here are the key findings:
1. Experience of misdiagnosis
A significant finding for the women in this study was the importance of gaining medical legitimacy, i.e. a diagnosis, for the pain and symptoms experienced by many of the young women. Findings showed that endometriosis had a tendency to be misdiagnosed to other conditions with similar symptoms such as IBS, urinary tract infection and polycystic ovary syndrome.
2. Attitudes of healthcare professionals
The continued visits to the doctor had left many of the young women to mistrust the expertise of their healthcare professional as their pain and symptoms were often explained away as ‘normal’ menstrual pain experienced by women.
The young women reported that they felt that their symptoms were often explained away as ‘normal’ period pain and thought that this was determined because of their young age.
3. A name for the symptoms
Many perceived the diagnosis of endometriosis as a validation that what they had been experiencing for so long was as serious as they had initially thought. Participants described that the legitimatisation of their condition with a label of endometriosis meant they were more open to talk about their condition with others, without the need to explain all their symptoms, which many felt was too personal and invasive to disclose.
4. Managing the condition at school or work
Experiencing the symptoms associated with endometriosis at such an early age meant that many of the young women struggled to navigate school life whilst managing a debilitating condition. Majority of the participants spent their school years without a diagnosis and not much understanding of what their symptoms meant. As a consequence, many described that they felt they could not say that they were struggling with what they thought at the time was ‘normal’ period cramps and bleeding, when their school friends did not.
Transitioning into work life for many posed new challenges, although most reported having supportive work environment that enabled them to work alongside their condition. This would either mean working from home, taking more frequent breaks throughout a shift or making adjustment at work to minimise the difficulty they experience from the symptoms. Along with trying to establish good impression at work in order to progress, many felt they needed to compensate for the days they were unwell, creating further pressure for themselves.
5. Impacting relationships and planning the future
Most women described endometriosis as creating a huge strain on their sex life due to the dyspareunia (pain during or after sex) that is commonly experienced with the condition. For many, this was at the heart of most of their relationship issues, as sex was a big part of a relationship in their early twenties. Many of these young women reported that the possibility of infertility did not play a huge factor in their current stage of life. However, being informed about what to expect in the years to come was discussed as crucial in how they were able to emotionally prepare for the plans they would make for the future.
Final thoughts
The findings from this study have shown key aspects of living and coping with endometriosis as a young woman in the UK. This is one of the first studies to have specifically examined the experiences of young women dealing with endometriosis, independent of the broader group of women this condition affects. The findings highlight the impact on the young women’s everyday life, including the challenges of obtaining a diagnosis, school life, work life balance and romantic relationships. The study has highlighted the importance of gaining medical legitimacy, especially for young women dealing with a condition affecting their everyday life. Steps that can be taken to improve the current experience with endometriosis are several, but here are just two ways which could help:
1. Continued education and research among healthcare professionals in early detection of endometriosis
2. Education around menstrual health within the school curriculum that can play a key role in receiving early intervention with their healthcare care professionals. This is already under way in England announcing the inclusion of menstrual health in sex education starting in primary schools from 2020.[4]
[1] World Health Organization. International Classification of Diseases, 11th Revision (ICD-11) Geneva: WHO, 2018 [2] NHS, 2019 [3] Endometriosis UK, 2017 [4] BBC News, 2019
About the author of this post:
Raakave Yoganathan is a psychological wellbeing practitioner working in the NHS. She completed a MSc in Health Psychology at City University.