Living with Pain

Pain and discomfort were part of Jem's life

Photo: Me and Jem comparing bloated tummies in 2018, captured by David Henderson xxx

Trying to recall how things developed with Jem is difficult, but I suppose it starts with her being accustomed to pain – particularly around her period, which seemed to gradually worsen over the years. This brings me to another condition Jem likely had, which is associated with her type of cancer (along with a range of other gynecological cancers): endometriosis (pronounced end-oh-mee-tree-oh-sis).

I know this topic might be off-putting to some – “women’s issues” and all that – but please read on. It's important that you're aware, for the sake of others like Jem.

It’s estimated that one in ten people with ovaries are affected by endometriosis, although this is likely a conservative estimate (numbers from Australia suggest it might be one in seven, more of the population than those with Asthma or Diabetes). I personally know three people – four including Jem – with this condition. You likely know someone with it too. Endometriosis occurs when tissue similar to the lining of the uterus grows in, on, and around other organs; it sometimes even infiltrates the organ tissue, impairing function, which can be fatal. It is commonly associated with the pelvic region, but it is a full-body disease and can impact any organ, including the lungs, kidneys, bladder – even the brain. It has been listed in the top 20 most painful conditions by the NHS.

Endometriosis is the only disease besides cancer that can grow its own blood supply and create new nerves. That means it doesn't just sit in the body—it spreads, connects, and invades. New nerves form inside the lesions themselves, which is why the pain can be so intense and unrelenting. Even worse, these lesions can grow along existing nerves, causing nerve damage, affecting movement, and turning everyday activities into a constant source of pain.

Beyond the extreme pain, endometriosis also affects the immune system, hormones and metabolism in the liver and adipose tissue. It is such a complex condition, it is difficult to do it justice here but it occurs in four stages reflecting increasing severity and spread. Stage 3 includes development of large haemorrhagic cysts on the ovaries (endometriomas), which are often “left” to see how they progress without surgery and Stage 4 is where the disease infiltrates the organs, ligaments, nerves, and tissues that they have been growing on, often leading to loss of organs and organ function.

It is a torturous condition many of us are fortunate not to suffer from, but it urgently needs greater awareness. Its under-researched and under-acknowledged nature is part of the reason Jem suffered for so long. For many doctors, it either “doesn’t exist” or is met with slow and inadequate investigation and treatment. While many of us experience only mild or moderate discomfort during our periods, we must recognise that for some, it is agonising – and the pain is not limited to menstruation.

Jem felt guilty for suffering. She increasingly isolated herself. She was tired of being ill and felt judged for it. She kept trying to push through – but struggled to hold down a job, keep up with daily tasks, or enjoy life at all.

You never know what someone is going through. Being dismissive just because your own experience isn’t bad is deeply unfair to those who are suffering. Chronic pain is isolating. When someone finds the courage to talk about their pain, believe them. Support them as best you can.

Jem believed the worsening of her pain was due to endometriosis – and herein lies the problem: the pathway to endometriosis diagnosis is painfully slow – 8 years on average with over 15 visits to GPs to access a waiting list. Usually, endometriosis can only be diagnosed via laparoscopy, a surgical procedure which in itself has waitlists of 2-5 years. While this is horrendous for those suffering from endometriosis, for those who have other malignant causes, like ovarian cancer hiding in the guise of endometriosis, this lengthy wait can be the difference between life and death.

The overlap between the two conditions is likely the key reason Jem’s cancer wasn’t diagnosed sooner.

There’s also the blood test (CA 125) that is used in investigating both endometriosis and ovarian cancer. She had a CA 125 test in mid-January 2023 – her result was 298. While reading endometriosis forums, she saw that others in what she thought was a similar situation had results in the 70s or 80s – rarely over 100. Terrifying.

Yet doctors still insisted she was too young for ovarian cancer. Until her diagnosis, six weeks later.

Poor Jem – she lived with pain, was frequently unwell, and often felt judged and deeply confused. She had to fight for tests, for appointments, and – most painfully – for empathy. As a socially evolved society, we can do better.

In writing this article, I must acknowledge two key inspirations and sources of knowledge: Kerry Hammond and Laurene Agnew – both incredible women living with endometriosis and advocating for themselves and others. As you can appreciate after reading about the severity of this disease, doing so requires immense strength. You can find Laurene’s work on Instagram at Far from Mint Condition. Kerry, a colleague of mine, met Jem only once, but offered her invaluable support and information at a time when she was truly struggling. Their openness and advocacy makes a real difference.