Certain Uncertainty: Uncovering Endometriosis
Alexa Chung, has written movingly of her experience of endometriosis in Vogue. She captures so eloquently with humour, warmth and outrage of a disorder that affects around 1 in 10 women, or to put it another way, around 200 million women (assigned female at birth) worldwide. Shockingly, it can take an average of 8 years to diagnose, which means many, many more years for many more women. ‘Living’ with endometriosis can be utter agony. Symptoms vary enormously hence difficulties in diagnosis, but what stands out is the pain and suffering endured - bodily, emotionally and psychologically. Many associate endometriosis with painful periods, however this is the tip of the iceberg and this association by many, does a dis-service to people who experience endometriosis on a daily basis.
The key characterisation to the disorder is the presence of tissue similar to the lining of the womb, located outside of the uterus. This inflamed tissue can cause invasion to other organs and scarring, leading to pelvic, back or abdominal pain, pain associated with sex, going to the toilet, digestive difficulties, unmanageable fatigue and indeed, infertility. What is so striking, is hearing accounts, like Alexa’s of a quest for understanding that can be so riddled with all-consuming bodily symptoms, interruptions to life’s hopes and functioning and mixed medical opinion, is how difficult it can be to navigate this uncertainty.
It can be a Herculean task to function whilst enduring endometriosis that many aren’t able to sustain the lives they worked so hard to build. There are thankfully some incredible resources, such as a facebook peer support group, ‘Nancy’s Nook Endometriosis Education’ with 178K members that can help support the uncertainty around seeking an affirmative diagnosis and then choosing a range of treatment options. These are perplexing and overwhelming to navigate, particularly coupled with infertility and the desire to start a family. They can vary from managing symptoms hormonally to complete surgical removal of affected tissue which can have further associated difficulties, but is considered the gold standard in endometriosis treatment. This must be done by a highly skilled specialist and sadly, there are hugely varying experiences of this for so many.
Elise Loehnen, in her book ‘On our Best Behaviour’, talks about female internalised experiences of misogyny in many arenas that are more recently coming to the forefront of our societal consciousness. Alexa too, touches on this in the arena of medical research around endometreosis in her quest to uncover where on earth the progress has been in the last 40 years? Thankfully there are some developments finally happening, that could give hope to so many sufferers. Progress is slow, but finally in process. It’s so important that we raise awareness of endometriosis, to open up more conversations and experiences like Alexa’s to normalise and put words around what so many are enduring.
Lena Dunham speaks widely too, of her endometriosis experience, she wrote about her decision to have a hysterectomy in 2018, after enduring 9 surgeries before the age of 31. She writes about the never ending pain, “with pain like this I will never be able to be anyone’s Mother. Even if I could get pregnant, there’s nothing I can offer”. Lena gives a visual to the experience of ‘trying to run with cement blocks strapped to (her) feet’, which gives some insight into the havoc and hopelessness that endometriosis can wreck. She writes poignantly, “I gave up on more treatment. I gave up on more pain. I gave up on more uncertainty”. After the hysterectomy, she describes her ambivalence and then her grief.
Whilst writers, actors and other celebrities increase awareness of just how misunderstood and under-researched the condition remains, for non-celebrity woman who too has endured both the physical and psychological pain, the everyday challenge includes being endlessly ignored and turned away with little currency and confidence to challenge the system.
What is clear, is the huge toll of psychological sequelae that is inevitable for those going through unmanaged or recurrent bodily experiences of pain and chronic uncertainty. It is vital that we make space to validate shared experience and help to think together and process all that has been endured. Coming full circle on this topic, I can also say that even after hope was lost, over 40 years ago, I myself was conceived to an endometriosis suffer.
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