March is proving to be the Matriarchal month, gracefully placed at the altar of the Divine Feminine to extol and celebrate all things women.
After celebrating International Women’s Day and the grounds gained by women who choose to challenge biases in all unpleasant forms and a Mother’s Day weekend spent bestowing accolades, celebrating those who have diligently embraced and taken up the role titled ‘mother’. We are now led cautiously into the middle of Endometriosis Awareness Month, a time of the year set aside to raise awareness of a condition so far-reaching, yet heavily underfunded, seldom diagnosed, vastly unknown by the public and scarcely spoken of.
Endometriosis- The byproduct of an uncomfortable sensation ravaging the body in pure agony, one where millions of women across the globe are forced to endure and live with. It is akin to that ex-friend, you’d rather never see again.
This painful condition is described as “a long-term condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes” – a long-term condition that can affect women of any age with significant impact on the life of the sufferer.
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Endometriosis diminishes the quality of life of the women who suffer from the aforementioned, especially those who are yet to be diagnosed, with their symptoms often dismissed by medical professionals as “women monthly troubles”.
This affects an estimated 1 in 10 women who are of reproductive age and can mean debilitating pain affecting their ability to socialise, work or perform everyday tasks.
A common scenario witnessed is one of a woman curled up in the fetal position, doubled-over, rocking from side to side in sheer agony, with little or no help in relieving the excruciating pain experienced. Oftentimes, having to depend on painkillers that sometimes feel like soft cotton wool placed on a fractured bone to alleviate the pain. The medical knowledge and skills gap are evident, which yields to the side effect of under-diagnosis or a brazen disregarding of the disease, leaving many women to their own devices; to continually bear the pain or heavily rely on painkillers with no end in sight.
In the developing world, diagnosis percentages are at rock bottom, with period taboos and hindering cultural practices in full force, where access to robust healthcare, knowledgeable medical practitioners in this field as well as the diagnostic know-how is elusive.
A recent study was carried out by the BBC in collaboration with Endometriosis UK, which received over 13,000 respondents expressing the manner in which their quality of life is affected by Endometriosis.
A large percentage of these respondents voiced the negative impact Endometriosis has on their lives, namely the impact on their mental health, relationships, career prospects, intimacy with a partner, and the reduced motivation to pursue goals and aspirations. A near 50% of the respondents described at least one occasion where suicidal ideation and anxiety were experienced and over 50% quoted other mental health illnesses as a result of the never-ending cycle of pain and dependency on painkillers.
As a result of this study, members of the UK Parliament pledged to raise awareness of this condition, explore funding avenues and earnestly “represent the interest of those who live with it”. Thanks to the active unwavering voices of advocates, importantly shouting from the mountain peak, sensitising and informing the populace of the horrors this disease inflicts, offering support and a safe space for those who suffer and endlessly advocating for their stories to be seen, heard and believed.
As research is showing, more early diagnosis is being made to girls as young as 11 years old with very little information offered to educate them on the mechanism of what is occurring within their female bodies.
The call to end #EndoTheStigma within schools by providing informative lessons about periods, whilst ensuring embarrassment about periods remains a thing of the past. The urgent need to sensitively expose all students, teachers and headteachers to the facts and figures about the intricacies of the female anatomy, periods and potential Endo red-flag symptoms is paramount, whilst affording young girls a safe space to voice their concerns within the confines of the school premises.
Dr Larisa Corda an Ambassador for Endometriosis UK highlights below the immediate need for better healthcare supporting women and girls health.
“A staggering 62% of women between the age of 16-24 do not know what Endometriosis is”, the danger of this distressing figure is a percentage of this demographic could potentially be presenting Endometriosis symptoms and putting it down to “just a bad period” without diagnosis and a pathway to intervention. The result of this heavily underfunded illness leaves as many as 11% of the population in limbo with the bothersome load of non-diagnosis and an uncomfortable ‘neither here nor there’ worry.
Endometriosis UK shared a story of Atima to raise awareness for the average time (8 years) it takes for an Endo diagnosis, as well as how this disease affects women across diverse ethnicities, especially those of Black and Asian Heritage. Unpardonably, Atima’s Endometriosis diagnosis took a very long 30 years to achieve.
One of the stigmas Endometriosis charities and Endo champions are advocating to end, is the assumption that Endometriosis is solely associated with the menstrual cycle and reproductive system. Endometriosis has the potential in many cases to affect the whole body, sometimes targeting the bowel, pelvic organs and in about 10% of sufferers affecting the lungs and diaphragm region of the body.
This condition presents debilitating pain, an enormous dent in the quality of life of the sufferer, the inability to be spontaneous and hinders a range of ‘normal life’ activities from social to personal.
This ailment is the potential root cause of one of the most worrying phases a woman keen to birth life experiences. Infertility or subfertility are common factors for many who endure the discomfort of this condition, and the challenging route to IVF is not a guarantee of welcoming a much-sought-after offspring. Although, many women have been successful following the IVF route, however, not one devoid of difficulty and potential heartbreak.
Singer, Songwriter and Creative Director of mossonyi.com, Onyi Moss has had to contend with the truths of Endometriosis, enduring disruptions to her busy schedule and having to face some harsh realities presented by this ailment.
An arduous journey by no means straightforward, she has been able to manage the pain associated with this condition, as the never-ending tough experiences are made apparent monthly, if not more frequently.
She has shared her brave existence with Endometriosis on her blog and is keen to use her platform to create awareness of this ailment, offering a safe space for pivotal information dissemination.
LEADING ENDOMETRIOSIS ADVOCACY VOICES
Endometriosis UK is at the forefront of Endo advocacy, it aims to reclaim control of the lives of the women in which this ailment diminishes the quality of life.
With “one in ten women endure unrelenting pain that affects every aspect of their lives each day. That’s over 1.5 million women who desperately need support and information to help them understand this chronic condition.”
Endometriosis UK plays an important role in providing resources, relevant information and invaluable support within a community for those affected by endometriosis. They host a myriad of relevant resources on their endometriosis-uk.org to improve the health and wellbeing of women in this position.
Endometriosis Advocate -Teniola Ogunro hosts an informative podcast that engages a wide range of “Endo warriors” who share their challenging stories to quell misinformation and raise awareness. She also holds insightful conversations with best-in-class medical experts offering information on demystifying this condition, whilst also highlighting medical advancement or the lack thereof.
As an “#Endowarrior” herself as she likes to put it, she is keen to raise awareness into this “enigmatic condition”, using her reinforced voice born out of personal experience to advocate for more research funding, timely diagnosis and a treatment pathway. Teniola’s message is clear, she is not defined by Endometriosis and is coursing through relentlessly. She supports fellow “#Endosisters” on her platform @notdefinedbyendo, one she has devotedly carved out on the internet for the furtherance of the efforts towards a better quality of life for “Endo sisters”.
Her admirable work can be found on her website notdefinedbyendo.com, Instagram page and engaging podcast notdefinedbyendo.
Endometriosis Advocate- June May, a Wiltshire grandmother takes on the hiking challenge to raise awareness of this incapacitating condition. As a mother who witnessed one of her two daughters endure the agony that comes with this disease, she intends to walk 20 miles from Bath Deep Lock to Devizes Wharf on the 27th of March raising awareness for Endometriosis UK.
Over 1,000 participants have taken on the #1in10Challenge advocating for research funding, accurate diagnosis and better care for the Endo sufferer.
Holistic Healing Endometriosis Advocate –Porsha Renae Hall, manages an Instagram platform @letshealendo where she advocates for the use of holistic healing methods coupled with positive affirmations to manage the pain endometriosis inflicts.
With Endometriosis awareness month in full swing, the narrative remains the same; this medical condition endured by millions of women across the globe is heavily underfunded, medical care is inadequate and diagnosis is protracted. The skills and knowledge gaps within this area of interest are widening, immediate action to bridge these gaps are urgently required.
It is imperative that improved Endometriosis funding, care and equipping medical practitioners with the armour of information for early diagnosis is necessary to complete the mosaic of women’s healthcare, which statistics have found heavily wanting. The apprehension in discussing ‘menstrual period’ topics must be eradicated in all spaces with the magical wand of evidence-backed information to destigmatise and demystify this ailment.
Advocacy work is deservedly louder than ever and government policy gatekeepers are implored to have their eyes and ears wide open, seeing the advocacy events taking place, listening to the narrative of sufferers and learning via case studies with the view of channelling significant funds towards the in-depth research of this cause.
The invaluable work of Endometriosis forerunners and champions is commendable, the tireless advocacy for better healthcare, raising awareness for this rarely talked about, however, prevalent condition has been lauded by many spectators. We must all join forces in supporting the work of these formidable advocates and spread the endo gospel far and wide, informing, educating and ensuring no sufferer presenting any form of symptoms is left behind.
Chichi is a Writer, Lifestyle Creative and Mum, who uses word artistry to paint pictures of life’s simple luxuries, whilst in the same breath harnessing the power of storytelling to encourage positivity.
She is the Founder and Creative Director of @mumsnation, a platform where she shares celebratory stories of fiercely fabulous mums.
Her work can be found on chichimorris.com and her social media @thechichimorris @mumsnation
