Why I began my endo campaign: Dr Anita Sharma

Why I began my endo campaign: Dr Anita Sharma

“A recent event on breast cancer in Oldham crystallised for me why we need to better address the health needs of not just Asian women, but females the world over.
The issues covered were occasionally heart breaking, as sisters spoke about continuing with family and work roles whilst receiving chemotherapy and the stigma of talking about issues such as screening and menstrual bleeding.
Though these human stories were sometimes troubling to listen to, there was also an overriding feeling of openness and optimism and crucially, togetherness. It was so heartening.
We still live longer than men do, but while their life expectancy is on the rise, women have stagnated. Also of concern is that females visit the doctor more frequently and are more apt to live in pain than their male counterparts are.
Health care is still dominated at the decision-maker level by men. And the stigma around gynaecology in particular, costs lives. Scientific research on female conditions remains painfully underfunded and treatment is of a poorer standard.
For those with doubts, consider the case of endometriosis. Endo-what? You might ask. In fairness, many of you have probably heard of the word but too few know what it means. Even though it affects one in ten of your wives, sisters, daughters and even mothers.
One of the first things the Endometriosis Awareness North campaign did, is survey men about the issue. So ignorant was the general response, that some believed the condition which causes chronic pelvic pain, was a throat infection! Even more disturbing was the news that some professional health carers did not know what it was, either.
To put you straight, endometriosis is when cells which should be growing in the womb, adhere to other parts of the body. This can produce pain so debilitating, it can render you unable to walk, hold down a job, and sometimes even bear a child.
Then there is the lesser seen condition. Horrendous mental health. Imagine being a younger person and missing out on all that life can offer. Imagine too, that nobody believed you and that doctors constantly sent you away with nothing more than paracetamol.
One such case was of an Oldham woman who was determined to become a teacher. Hers was a catalogue of denial by medics and a legacy of physical strife that led her to being in a wheelchair in her teens.
After decades treating such women, I reached a point where I felt something had to be done. The endless cases of misdiagnosis, the ignorance around the condition, and the fact that women were not permitted to make decisions about their own health, were the factors in me forming Endometriosis Awareness North.
And how we’ve touched a nerve!
It began with my Patient Participation Group whose role previously had been to raise issues on behalf of the patients at my surgery. Mine were already incredibly active, and was shortly augmented by local people deeply concerned about how long it took to diagnose endometriosis.
Because it has symptoms, from the aforementioned pelvic soreness to back pain that could mean something else, pressured medics short on time and resources, often concluded that it must be anything from irritable bowel syndrome to appendicitis. In some cases, a quick look at the patient’s notes would have revealed a long-term pattern of suffering suggesting endometriosis.
The first group we targeted were doctors and have been hugely encouraged by both the number and calibre of those who now “bat for us.” This has allowed us to speak to conferences of junior doctors too, so that they are clued-in before they begin what we hope will be a lengthy career in medicine.
Decision-makers were also high on the agenda. We saw by the speedy work on a COVID vaccine just how quickly and yet thoroughly, a cure can be found. When it comes to endometriosis, care is exactly the same as it was in the 1980s – we know, we have spoken to patients from that era – and money simply isn’t flowing into research to find a solution. Mayor of Greater Manchester Andy Burnham is just one of those now championing our cause.
The biggest satisfaction, however, lies in the creation of a network of “endo warriors” (the name they have adopted). Our social media was the first platform, and it has snowballed to include women from across the world. It has allowed them to speak to one another and realise they are not alone. Moreover, the noise has made others sit up and slowly put the issue on everybody’s agenda. It takes some courage to stand in front of a room and share your story, but we now have a group of ambassadors who do exactly that. They also includes the men who care for those with endo.
For communities where dialogue on such issues proves problematic, our coffee mornings and sponsored walks have created safe places to discuss concerns and crucially, make new friends. Finally, we are increasingly being asked to speak in schools – to both boys and girls – and address audiences at events such as the breast cancer meeting I highlighted, earlier. This is because endometriosis is exactly like breast and ovarian cancer, the menopause and fertility. They are tragically ignored.
This is symptomatic of something we call, “health inequalities” and it can apply to men, too. Why did more people die in the pandemic from our communities? Poorer healthcare? Poverty and living conditions? The fact that many of us work frontline?
What our campaign is, first and foremost, is a drive to treat everyone regardless of their background with the same equity and respect. It is in all of our interests to achieve this, even when at face value a condition such as endometriosis may be seen as “just a woman’s problem.”
Learn more about Endometriosis Awareness North at https://endometriosisawarenessnorth.com/

Categories: Health

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