I hate my uterus: endometriosis is a living nightmare for far too many people – Naomi McCabe, Girlguiding Scotland Speak Out champion

In the UK, 1.5 million people have endometriosis. More must be done to ensure swifter diagnosis of the condition and to find better treatments

It seems everyone born with a uterus has a story to tell about how they were misunderstood by the medical system. Personally, mine starts when I was told that many stomach ulcers turned out to be period pain. I was ten. I hadn’t started my period.

However, this isn't just a personal experience. When I tell this story, I get a flurry of responses from others dealing with similar unresolved pains or who have gone through much worse. So why is this lack of understanding so common? Does it stem from the stigma we’ve had over a perfectly natural problem for years? Or is it down to the lack of research into these debilitating issues?

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One-in-ten people with a uterus will develop endometriosis at some point in their life. This is when tissue similar to the lining of the womb grows outside the uterus, such as in the ovaries, bowels and even lungs. It’s a debilitating illness, physically and mentally, yet it takes, on average, eight years to diagnose.

That’s nearly a decade of suffering for most people with an illness that controls their life, but it is barely acknowledged as a serious and commonplace affliction. And it doesn’t just choose to strike once a month, contrary to popular belief. A whole range of symptoms has to be dealt with all the time.

From ovarian cysts to bladder spasms, chronic pain to heavy bleeding and, sometimes, infertility, we are expected to go about our day and not let anyone know about our “little secret”. As with most chronic illnesses, finally being listened to, believed, and getting a diagnosis is such a relief. However, with endometriosis, the only way to get a definite diagnosis is through surgery.

If that doesn’t sound bad enough, wait until you find out there isn’t a cure. Painkillers and the contraceptive pill or an implant (with a list of potential side-effects) are the standard treatments. In some cases, surgery may be used to cut away the lining of the uterus. Success rates vary. With 1.5 million people in the UK having to fight this battle, surely there needs to be more recognition, options and support for those impacted?

Personally, I think a good start would be to tell young children about periods from a far younger age. On average, people assigned female at birth will begin their periods around the age of 12, although some may start as early as eight. They may only start learning about menstruation and sexual health from the age of nine or ten, which doesn’t always give enough time to teach young people how to talk about their bodies and what is healthy or not. Instead, playground gossip and children’s imaginations fill in a lot of the gaps.

Naomi McCabe is one of the ten per cent of women worldwide affected by endometriosisNaomi McCabe is one of the ten per cent of women worldwide affected by endometriosis
Naomi McCabe is one of the ten per cent of women worldwide affected by endometriosis

So, yes, I hate my uterus. I hate having to constantly deal with bleeding and cramps, while not being able to talk about it freely. But what I hate more is the constant dismissal from professionals of serious symptoms, and the lack of research for a medical issue that affects ten per cent of women worldwide. In any other scenario, would you be told to take paracetamol and have a nice hot bath after losing pints of blood and throwing up from pain?

Naomi McCabe is a Girlguiding Scotland Speak Out champion



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