Denied major endometriosis surgery for being overweight


I was furious then and still am (Photo: Jen Thornburn)

I have stage 4 endometriosis and adenomyosis.

I first saw a doctor for my distressing symptoms when I was 12 and have struggled for help ever since.

My symptoms mean that endometrial tissue grows outside the endometrium, both in the walls and muscles of the uterus, causing severe lifelong pain and a range of debilitating symptoms.

A few months ago, the 29-year-old was sitting in front of a specialist consultant for the NHS Trust of Addenbrook, who said that the only viable and reasonable cure for my illness was multiple surgeries. said.

But then he told me the NHS would not operate on me because of my weight.

I have already waited over a year to see him and now he refuses to help me because I am fat.

I was furious then and still am.

For as long as I can remember it has been an uphill battle with the NHS taking me and my pain seriously.

Anyone with endometriosis will know how poorly understood it is, since the average time to diagnosis is eight years, the same as it was ten years ago.

A 2019 study found that endometriosis has a “devastating impact” on people’s lives, with about half of those affected experiencing suicidal thoughts. This in turn prompted a government investigation and has been called one of the top 20 most distressing symptoms by the NHS.

However, funding and research remain extremely scarce.

The cause of endometriosis is still unknown to medical professionals, and there is no cure.

Although hormonal therapy may calm the disease in the early stages, the most common long-term treatment for stage 4 endometriosis is complex surgery, and in the case of adenomyosis, hysterectomy.

It has always been thought that my weight was due to endometriosis.

When I was 15 years old and suffered from severe bulimia, I was told that my severe pain and heavy cramps (frequent fainting and nausea) were due to being overweight. I remember.

When I had a laparoscopy at age 19 and was finally confirmed to have endometriosis, I gave my symptoms a name. I thought it would be easier, but the pain didn’t go away, it just got worse, and no one took me or my illness seriously.

Even though people of all sizes suffer from endometriosis, my condition has consistently been due to my weight. My pain and increasingly debilitating symptoms have been minimized over the years and ignored to the point that I am now in Stage 4.

I felt like my life and body didn’t matter (Photo: Jen Thornburn)

This means that the condition has spread beyond my reproductive system to multiple organs that are bonding, fusing and attaching to each other and even affecting their function.

I will have to live with the debilitating complications of this disease for the rest of my life, including severe pain and scarring, damage to my intestines and digestive system, and even damage to my kidneys.

You may also need a colostomy bag and a urostomy bag as a result of surgery, but you may need one bag again if you don’t get surgery soon.

If you live with a fat body, you may want to lose weight. Or you and others have been taught that you have a bad relationship with food and hate your body.

So when I heard that I was being denied treatment simply because I was overweight, I felt like I didn’t care about my life or my body. I didn’t care about myself, so I didn’t care about anyone else.

Some people, reading my situation, may have trouble understanding why I’m not thin, and others may believe that I put myself in this situation on purpose. As I’ve discovered, empathy for fat people is unfortunately too often a limited resource.

I decided not to follow forced advice. Because it’s the right health decision for me, but regardless of my size, it’s natural to seek treatment for pain.

Too often, conversations about fat phobia are about the relationship between fat people and their bodies, rather than trying to blame oppressive structures and systems. It doesn’t matter if you think it’s “okay” to be fat.

The real and serious question is whether it is fair to ban treatment for certain groups of people.

More than 80% of NHS clinical care groups in the UK are restricting access to surgeries and treatments based on a patient’s BMI, a move the Royal College of Surgeons criticized as discriminatory and “against clinical practice”.

And in the past, senior health officials and surgeons have labeled these measures little more than cost cutting.

But part of the reason I’m at this weight is because my illness prevents me from walking, exercising, and often even getting out of bed. If they had listened to me sooner, I probably wouldn’t be in this position.

That’s part of why I’m furious with the NHS. They have been ignoring me for over ten years and now they don’t want to treat me.

It feels inhumane.

The NHS claims this is a matter of risk, but by keeping me out of surgery, I am putting myself at increased risk for kidney failure, peritonitis and complete bowel obstruction, all of which are medical emergencies. Instead of being held accountable for their negligence, they blame my body.

Being fat is often synonymous with laziness, overeating, poor health and moral failure. These are pernicious ideals that shape narratives around fat people to justify our abuse.

But the real problem isn’t fat people or being fat, it’s generalized fatphobia.

Studies have shown that overweight people receive discrimination and poor care from health care providers, and the negative effects of weight discrimination can even lead to an increased risk of death.

I don’t think being fat is a bad thing, but it’s very stressful living with a body that you’ve been taught to hate yourself and everyone else. It took time, but I have grown to not only accept my body, but also love and cherish it.

I believe that being denied potentially life-changing treatment is discrimination and will ultimately leave me with indescribable pain with lifelong damage.

Now I am raising money for private treatment, but I feel I have no other choice. The NHS forced me to do this and my first surgery alone cost him £31,000.

A leading private endometrial doctor confirmed to me that my weight would not be a barrier to performing the required surgery. However, I am worried that complications from the surgery will not be covered. Alternatively, the scale of my illness and injury turned out to be much worse during surgery.

If I can’t afford all my treatment and the NHS refuses me, where am I left? Health care is a universal right.

The life, health and well-being of obese people should not be collateral damage from chronic underfunding of the NHS. Now is the time to change that.

To donate to Jen’s fundraiser, please visit https://www.gofundme.com/f/fat-trans-persons-surgery-stage-4-endometriosis.

Have a story to share? Email us at jess.austin@metro.co.uk.

Share your opinion in the comments section below.

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