I feel it’s important to start this piece with a disclaimer. I don’t have endometriosis. I cannot pretend to know what it is like to suffer the hardships of this condition. But I do think it is of paramount importance that we discuss issues such as this which affect women every day. Our society works hard to silence women with conditions such as endometriosis – even if you do not suffer with endometriosis, chances are you have experienced the neglect of health conditions impacting exclusively women. Whilst treatment is on offer from the NHS in the UK, the social implications for women who suffer with endometriosis span far wider than the GP.
Endometriosis affects 1.5 million women in the UK. This isn’t a particularly rare or new condition and yet many will still ask: what is endometriosis? Endometriosis is a condition where ‘the cells similar to the uterine lining start to grow in other places of the body, including the ovaries, fallopian tubes, and bowels.’ Endometriosis is known to be a very painful condition which can result in numerous symptoms which can be difficult to manage. Sufferers have to endure ‘abnormally heavy or painful periods; painful bowel movements and urination; chronic fatigue; pain during intercourse; pelvic/lower back pain and nausea’, to name just a few. Even during treatment endometriosis can render everyday tasks, which many take for granted, very difficult.
To learn more about this experience, we spoke to University of Kent graduate Rhiannon Hurll, who has suffered from endometriosis for many years. It is a condition that led her to start a petition campaigning for women with endometriosis to be allowed to freeze their eggs on the NHS, offering them a longer window to conceive, should they wish, in spite of their endometriosis diagnosis. The petition has amassed over thirty-nine thousand signatures thus far and Rhiannon hopes this number will continue to rise.
Endometriosis hinders Rhiannon’s everyday life. It is common for a woman with endometriosis to undergo surgery to remove lesions which grow on the reproductive organs. In trying to combat the lesions which return within months of surgery, Rhiannon started monthly injections of Zoladex which put her into a medically induced menopause. The prospect of infertility at such a young age inspired Rhiannon to start her petition. ‘It was extremely upsetting to be told as a 19-year-old woman that I had a condition which carried a high chance of infertility’ Rhiannon tells us. ‘To have the back-up plan of freezing your eggs would be amazing as many of the mental health issues [that I have experienced] around endometriosis have stemmed from the possibility that I may be infertile.’
Rhiannon’s story highlights the layered emotional turmoil of dealing with this condition. Currently, the only option for women with endometriosis who wish to freeze their eggs is to pay privately. It currently costs £6,000 to have your eggs frozen for around three years. At this price, this isn’t an option for the majority of women. This exposes the misogyny at the heart of the medical system, where women have to decide between paying their bills and being able to have a child. This is especially pertinent when many women have to take time off work due to the pain and physical toll endometriosis takes on the female body. Not every woman wants to have a child, and that is entirely their prerogative. But in 2021, women should be able to have the freedom to choose whether they want to be a mother, and this choice should not bypass women with endometriosis.
Not only are women faced with early induced menopause, and the financial dilemma which comes with having to pay privately to freeze their eggs; endometriosis also intrudes on the day-to-day life of the sufferer. The effects of endometriosis can look different on every woman. The severe pelvic pain is extremely disruptive to a normal work or social life. ‘I am always tired, which was a huge struggle when trying to do my degree’ Rhiannon tells us. The taboo surrounding gynaecological problems and female pain means women like Rhiannon face challenges in managing the symptoms of endometriosis whilst being in education, but may not feel like they can express this openly and seek the support they deserve.
Endometriosis can also impact how women navigate sex and relationships. This has been a particularly confronting problem for Rhiannon. ‘The condition causes an extreme pressure on relationships, or even just wanting to have fun and be young!’ she tells us. ‘I have stayed in toxic relationships just because I was worried about the ticking time bomb on trying to conceive. And there is very little chance of you having a drunk one night of fun, as good luck having the pain/bleeding during sex conversation with someone you barely know!’.
This is a classic manifestation of the wider misogynistic traditions of our society where women can be made to feel ashamed to express when they may be feeling uncomfortable in a moment of intimacy. When women are made to feel embarrassed for experiencing these issues, how can we expect someone with such a complex health condition to open up and talk about it? A discourse which seeks to encourage acceptance of these experiences and the hardships which come with them is vital, especially for women who are new to navigating endometriosis.
It is of the utmost importance that barriers to open communication are broken down and that illnesses such as endometriosis are not seen as a taboo subject. Female pain, such as that experienced during a period, should not be subsumed into daily life, nor should it be shielded from men in an effort to spare their blushes. If we want to encourage greater knowledge and personal understanding of these experiences, every effort should be made to include men in these discussions.
It is time for us to acknowledge the devastating impact endometriosis has on the lives of women and listen when they speak about their experiences! To hear more about Rhiannon’s story, find her on Instagram.