NICE guidelines on endometriosis: Diagnosis will improve, treatment won’t

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EndometriosisThe UK National Institute for Health and Care Excellence’s new guidelines on endometriosis will be transformative in enabling women to circumvent years of unnecessary suffering, writes Lucy Pasha-Robinson in The Independent . But earlier diagnosis does little to address the woefully inadequate treatment options available to sufferers.

Lucy Pasha-Robinson writes in The Independent on her harrowing experience with endometriosis. She writes: “In 2013, 10 years after I first sought answers for my chronic pelvic pain, I was diagnosed with endometriosis. At first I was buoyed by the diagnosis. Finally, I had got to the bottom of a problem that in the six months before had left me repeatedly incapacitated. I became used to experiencing agonising pain, and sitting tear-stained in an A&E waiting room in the middle of the night.

“In reality, I had been plagued to a lesser degree by symptoms since childhood. The diagnosis was frightening, but it also gave me hope that it could be treated and that soon I would be restored to my previously healthy 23-year-old self.

“Perhaps if I had been diagnosed sooner, this expectation would have been closer to reality. Instead, diagnosis for me was the calm before the relentless and unwavering storm that continues to have very real consequences on how I am able to live my life. My experience highlights the importance of the National Institute for Health and Care Excellence (NICE)’s new guidelines on the condition that is thought to affect 2m women in the UK.

“NICE, for the first time, has categorically told GPs to take women seriously and to suspect endometriosis in those presenting with pelvic pain. The guidelines emphasise the unacceptable waiting times women face to receive the vindication that the pain they are suffering is not normal. It is not “just” period pain, or irritable bowel syndrome, or a urinary tract infection or growing pains. It is not exaggeration or hypochondria or having a low pain threshold or a mental health issue.

“The disease causes the uterine lining to grow outside of the uterus, binding to other organs and causing painful cysts, adhesions and scarring. But it is also invisible on the outside and women wait an average of 7.5 years between first seeing a doctor and getting a confirmed diagnosis. For the first time, there is recognition of the devastation this wait can cause, eroding self-confidence and allowing the disease to progress.

“For this reason, I hope the advice will be transformative in enabling women to circumvent years of unnecessary suffering – and more advanced disease as a result of it.
But earlier diagnosis does little to address the woefully inadequate treatment options available to sufferers.

“For me, diagnosis was the beginning of a blind descent into the unknown. When a grapefruit-sized cyst was found in my right ovary in 2013 – the source of the gut-wrenching pain I had been suffering – I was stunned when my GP told me to take the pill and ‘see how it goes.’

“There was no referral to a specialist, who would have told this doctor his advice was ignorant and dangerous. There was no MRI scan that would have shown my ovary was glued to my pelvic wall and deep infiltrating disease was pervading my internal organs.

I was lucky that my family would not accept his advice. My auntie also suffered with the disease and my mum knew I had to see a specialist, who eventually gave me my diagnosis after a lengthy surgery.

“But less than three months later, having barely recovered from my first operation, the hot, dragging pain was back. The cyst had recurred, and I was hauled back in for a second operation. This time, surgery alone wasn’t deemed an effective enough treatment method, so I undertook a course of six monthly injections to induce the menopause, shutting down my reproductive organs to try and stem recurrence.

“Perhaps it is stating the obvious, but it is extreme to have a six-inch needle plunged into your stomach each month. It is extreme to go through the menopause at 25. It is mind-boggling that the only options available to me were radical hormone treatments and invasive surgery.

“It was hugely challenging to adjust to a new life of hot flushes, mood swings, hair loss, dry skin, weight gain and other symptoms, while also trying to progress in my career and maintain my relationships. Even after the treatment finished, I still felt its effects.

The second surgery presented further challenges when I sustained nerve damage to my pelvis during the operation, something over two years later I have never fully recovered from and that means I often suffer episodes of intense pain.

“Since then, the disease has recurred for a third time despite me taking every possible measure to prevent it. I will have to brace myself for another surgery in the future.

“The impact of an endometriosis diagnosis is far-reaching. It seeps into your self-image, relationships, social life and ambition. It shapes career choices and future goals. Many sufferers lack the joined-up, multidisciplinary care that living with a chronic illness requires. Counselling, physiotherapy, dietary guidance can all make a big impact on how women cope in the long term. Short of a total cure, sufferers urgently need to be presented with better treatment options that recognise this.

“There is a staggering amount we do not know about endometriosis and an equally staggering amount of misinformation around its treatment. Repeated surgical intervention, as I have learned, carries significant risks and trial-and-error hormonal treatments have proved ineffective for me.

“My case is severe, but not uncommon. Yes, the NICE guidelines are an excellent first step in offering sufferers important validation. But without better long-term treatment options, diagnosis will still be just the first hurdle in a very long road to recovery.”

The Independent report

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