I have stage 4 endometriosis and adenomyosis.
I first saw a doctor for my painful symptoms when I was 12, and I have been fighting for help ever since.
My conditions mean that my endometrial tissue grows outside of the uterus lining, and into both the wall and muscles of the uterus – causing severe life-limiting pain and a range of debilitating symptoms.
A few months ago, aged 29, I sat in front of a specialist consultant at Addenbrooke’s NHS Trust who told me the only viable and reasonable treatment for my disease was multiple surgeries.
But, he then informed me the NHS would not perform surgery on me due to my weight.
I’d already been waiting over a year to see him, and now I was being denied the very thing that would help me because I am a fat person.
I was, and still am, furious.
For as long as I can remember, it’s been an uphill battle with the NHS to take me or my pain seriously.
For anyone who has endometriosis, they will know how poorly understood the condition is, with the average diagnosis time being eight years – the same as it was a decade ago.
In 2019, research revealed endometriosis as having a ‘devastating impact’ on people’s lives – with around half of its sufferers experiencing suicidal thoughts. In turn, this prompted a government inquiry, and it has been called one of the top 20 most painful conditions by the NHS.
Yet, funding and research remains at an extreme low.
Medical professionals still do not know what causes endometriosis, and there is no cure.
Hormonal treatments may placate the disease for some in earlier stages, but the most common long-term treatment for stage 4 endometriosis is complex surgery – and for adenomyosis, a hysterectomy.
My weight has always been blamed for my endometriosis.
I remember being 15, severely struggling with bulimia, and being told my severe pain and heavy periods – which frequently caused me to faint or be sick – were because I weighed too much.
When finally a diagnostic laparoscopy at 19 confirmed endometriosis, I had a name for my symptoms. I thought I would feel relieved but my pain didn’t stop, it only got worse, and still, no one would take me or my disease seriously.
My medical condition was consistently blamed on my weight, even though people of all sizes struggle with endometriosis. My pain and increasingly debilitating symptoms were minimised over the years, ignored to the point that it’s now stage 4.
This means the condition has spread past my reproductive system into multiple organs, causing them to tether, fuse and attach to one another – even impacting their functioning.
I will have to live with life-long debilitating complications from this disease, such as severe pain and scarring, damage to my bowel and digestive system – and possibly even damage to my kidneys.
As a result of surgery, I may end up needing a colostomy bag and a urostomy bag, too – but I am also likely to end up with one if I don’t have surgery soon.
When you live in a fat body, it is assumed that you want to lose weight; or that you have a poor relationship with food, and hate your own body, because you and everyone else is taught to.
So when I heard that I was being refused treatment, simply because I was a fat person, I felt like my life and my body didn’t matter. That it was assumed I didn’t care about myself – so nobody else did either.
Some may read about my situation and struggle to understand why I won’t just lose weight, and some may even go as far as to believe that I’m deliberately putting myself in this situation. As I’ve discovered, empathy for fat people is unfortunately very often a limited resource.
I’ve made the decision not to follow coercive advice because that is the right health decision for me, but I deserve treatment for my pain regardless of my size.
Too often in conversations about fatphobia it becomes about a fat person’s relationship with their body, rather than about holding oppressive structures and systems to account. Whether you think it’s ‘OK’ to be fat is beside the point.
The real, serious question is: is it fair to bar a group of people from treatment?
Over 80% of NHS clinical care groups in England restrict access to surgery and treatments based on patients’ BMI, a move which the Royal College of Surgeons criticised as discriminatory and ‘against clinical guidance’.
And, in the past, senior health officials and surgeons have labelled these measures as nothing more than cost-cutting exercises.
But part of the reason I’m this weight is because my disease has left me unable to walk, or exercise, and often unable to even leave bed. If they’d listened to me earlier, I probably wouldn’t be in this position.
That’s part of why I’m so furious with the NHS: they have ignored me for over a decade and, now, they don’t want to treat me.
It feels inhumane.
The NHS claims it’s an issue of risk but by not giving me surgery, they’re putting me at increased risk of kidney failure, peritonitis, and a full bowel obstruction – all of which are medical emergencies. Instead of their negligence being held accountable, they blame my body.
Fatness is often synonymous with laziness, gluttony, poor health, and a moral failure. These are harmful ideals that shape a narrative around fat people in order to justify our mistreatment.
But the real issue isn’t fat people or fatness, though – it is systemic fatphobia.
Studies show fat people experience discrimination and worse care from healthcare professionals, and have even found that the harmful effects of weight discrimination can result in an increased risk of death.
I don’t believe there’s anything wrong with being fat, but it is extremely stressful to live in a body that you, and everyone else, is taught to hate. It has taken time, but I have grown, not just to accept, but to love and cherish my body.
I believe being rejected for potentially life-changing treatment is discriminatory, and will leave me in indescribable pain with eventual life-long damage.
Now, I’m fundraising for private treatment and feel like I have no choice – the NHS have forced me into this, and my first surgery alone is £31,000.
A leading private endometriosis specialist has confirmed to me that my weight is not a barrier to him performing the surgeries I need. Except, I’m scared that complications arising from my operation won’t be covered; or the scale of my disease and damage is revealed to be far worse during surgery.
If I can’t afford all of my care, and the NHS refuses to treat me, where will that leave me? This isn’t a situation anyone should be in – healthcare is a universal right.
Fat people’s lives, health and wellbeing should not be collateral damage in the chronic under-funding of the NHS – and it’s high time it changed.
To donate to Jenn’s fundraiser, visit: https://www.gofundme.com/f/fat-trans-persons-surgery-stage-4-endometriosis
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