Endometriosis is a common, chronic gynaecological condition with a range of symptoms including persistent pelvic pain, painful sex, heavy bleeding, and infertility. It occurs when tissue that is similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes.
Endometriosis is estimated to affect 1 in 10 women, or 178 million women globally. To put this into context, more women in the UK have endometriosis than diabetes. Despite these staggering statistics, endometriosis is known as the “missed disease,” due to the uncertainties and inconsistencies surrounding its diagnosis and management.
The ‘trifecta’ of symptoms relating to endometriosis are:
- Bad menstrual cramps
- Painful intercourse
Even when a diagnosis is given, it is often after years of pain and discomfort. In fact, the average diagnosis time is 7.5 years in the UK. Women experiencing these abnormal symptoms report being disbelieved by health professionals and have their symptoms discredited, or even labelled as hysteria. They are therefore forced to organise multiple GP visits in order to receive an actual diagnosis. The resulting delay in treatment is a missed opportunity to address a condition which can go on to significantly affect fertility and quality of life.
Endometriosis is one of the various conditions within women’s health which have historically been “misattributed as evidence of mental illness, deviant behaviour, or a lack of self-care.” Nicky Hudson, Professor of Medical Sociology at De Montfort University, argues this is due to the masculine being used as the standard of what constitutes health. This results in “diseases of women” being commonly misunderstood, invalidated, and ignored. The lack of knowledge and understanding surrounding endometriosis has also led to exclusion of the condition from research agendas, medical categorisation, and therefore treatment pathways.
My personal experience:
My own experience of endometriosis has allowed me to gain insight into the ways women’s health is systematically neglected. After six years of misdiagnosis, repeated referrals to sexual health clinics, pointless GP visits, and insufficient medical examinations, I was finally diagnosed with endometriosis at the age of twenty-one.
Having endometriosis does not mean that you have every single symptom that defines the condition. For me, endometriosis caused inflammation and pain in the pelvic area for years on end. I knew that something was wrong but every time I visited GPs they urged me to take contraception to try and see if the “bleeding would just go away.” When it became obvious that the bleeding was not something altered by contraceptive methods, I chose to seek further medical advice.
After years of suffering from pain, I had a consultation with a specialist gynaecologist and received my medical diagnosis. Within minutes of talking to my consultant, she was able to diagnose me and plan surgical treatment. Her willingness to listen to my past medical history and my concerns was something I had not yet experienced. She had completely validated everything I had been feeling.
What I have learnt from my experience with the diagnosis and treatment of women’s health is that you must not take “no” for an answer. Continue to pursue medical advice and intervention and demand that your voice is heard. Every woman has the right to know what is going on with their body. It’s OUR body after all!