March is Endometriosis Action Month. Endometriosis affects 1 in 10 women and those assigned female at birth in the UK according to leading charity Endometriosis UK. Jess an Equality, Diversity and Inclusion Administrator here at King’s shares her own experience.
Back pain, dizziness, nausea, must be my cramps kicking in again!
Whether you call it “Aunt Flo”, “that time of the month” or the “crimson tide”, people who menstruate have different experiences with their period. For some, it is a slight inconvenience (how does it feel to be God’s favourite?). While for others, it is a living nightmare of misery and torment (can you guess which category I fit into?). My name is Jess, I am an EDI Administrator, and I am writing this blog to share my experiences of expected but undiagnosed Endometriosis.
Endometriosis is a chronic illness which is characterized 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 tissue (adhesions, fibrosis) within the pelvis and other parts of the body. Endometriosis can cause many symptoms including those I have mentioned and infertility.
I have had painful periods for over 15 years and had various symptoms that include severe pelvic and back pain, headaches, loss of appetite, nausea and presyncope (feeling faint). These symptoms can become overwhelming and can take over my life. I’ve missed so many days of school, lectures and often take time off work due to spending days at a time in bed with crippling pain. As you might imagine, popping a couple of paracetamols never seemed to help. I think morphine might be more suitable!
I’ve had many visits to the doctors over the years regarding my pain, but it was never carefully considered by medical professionals. It wasn’t uncommon for it to be brushed off by my doctors who would say things like “oh it’s normal to have a bit of pain every now and then” or “just take some ibuprofen and you will be fine. Don’t worry, I will prescribe you some painkillers, or you might want to think of taking birth control”. Don’t get me started on the doctors who suggested I exercise, have a healthy diet, or try yoga. On my worst days, I can barely stand up straight, let alone correctly execute a downward dog! Unfortunately, I have come across multiple stories from people who have had similar experiences (for more information, please see further resources section).
You feel like you are constantly being fobbed off and hurried out the door with a new prescription you know will never work. There seems to be a lack of urgency when it comes to gynaecological matters. It’s no wonder why it takes on average 8 years on to be diagnosed with endometriosis.
Often, this comes down to the misogyny present within the medical profession and the lack of awareness of issues that largely effect marginalised genders. Our pain can sometimes be overlooked, and we are expected to push through and get on with it with little support. Caroline Criado Perez a British Journalist and author of “Invisible women: Exposing Data Bias in a World Designed for Men”, explains that women are routinely under-represented in clinical trials, as it is thought that periods obscure results, and that medical research proposed by women, for women, is not allotted the same funding as medical research proposed by men, for men.
Conversations around menstruation and the effect of painful periods are being discussed more, and some companies are arranging adjustments for their staff; Spain has recently become the first EU country where it is legally required for staff to be provided with paid menstrual leave if requested. Following a similar initiative which started in Japan in 1947. At King’s our menstruation policy allows adjustments to be put in place to support staff with painful, or inconvenient menstruation symptoms, which affect their quality of working life. Our policy allows for more flexible working, which can be explored further and discussed with your manager. The purpose of this blog was to raise awareness of chronic illnesses associated with the female reproductive system that has an impact on so many people such as myself, and to reassure others going through a similar experience, that you are not alone. If you feel that you are being ignored by the healthcare system, you should always strive for an appropriate solution that gives you the assurance that it will be properly investigated.
Further Resources and reading
- NHS: Endometriosis – Endometriosis – NHS (www.nhs.uk)
- World Health Organisation: Endometriosis – Endometriosis (who.int)
- Ending endometriosis starts by saying it | Endometriosis UK (endometriosis-uk.org)
- BUPA – Endometriosis at work | Women’s Health Hub | Bupa UK
- Young women told to “get pregnant” to ease endometriosis symptoms – Women in 20s told ‘get pregnant’ to ease endometriosis symptoms – BBC News
- Endometriosis care needs urgent improvement – Endometriosis care needs urgent improvement, MPs say – BBC News
- Endometriosis in the UK, Time for Change – Endometriosis APPG Report Oct 2020.pdf (endometriosis-uk.org)
- Women’s Health: Female patients to be asked about “gender health gap”- Women’s health: Female patients to be asked about ‘gender health gap’ – BBC News
- Invisible women: Exposing Data Bias in a World Designed for Men – Invisible Women: Exposing Data Bias in a World Designed for Men: Amazon.co.uk: Perez, Caroline Criado: 9781784741723: Books
-  World Health Organisation – Endometriosis (who.int)
-  Endometriosis in the UK: Time for Change – APPG on Endometriosis Inquiry Report 2020 – Endometriosis APPG Report Oct 2020.pdf (endometriosis-uk.org)
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