Endometriosis? It’s just women’s problems, right?

It affects one in 10 women and can take a devastating toll – yet endometriosis remains relatively unknown and takes on average seven to 10 years to diagnose. Here, comedy writer and author Eleanor Thom, who has just written a book on the subject, sets the record straight…

it was just before my 18th birthday when I first heard the word endometriosis. As I drifted in a haze of post-op morphine, my doctor told me I had this thing and that I would need more surgery. It suddenly all made sense – what I had been suffering from all these years wasn’t just women’s problems, was it?

From the age of 11, my periods had been intolerably painful and heavy. I would vomit, pass out, have a double-whammy combination of constipation and diarrhoea and was so very, very tired. I assumed I was just unlucky, oversensitive, weak even. What I didn’t know was that these were major symptoms of a disease I’d never heard of.

The void in information for sufferers of endometriosis is what prompted me to write a book about it. I wanted something to make it feel more normal, less lonely and confusing and perhaps even make me laugh. It’s the book I wish someone had pressed into my hand as a teenager, to help me each month as I was forced to miss another day of school, another party or sleepover.

So what exactly is en-do-me-trio-sis? It’s when tissue similar to the lining of the womb is found in and around the pelvis, attaching itself to organs and the spaces between them, including the Fallopian tubes, uterus, bladder, ovaries, bowel and peritoneum. Every month the tissue bleeds, like a period, except the blood has nowhere to go, so it stays there, causing inflammation and pain. Sometimes, the disease can stick organs together or form cysts on the ovaries.

Symptoms can include pelvic pain, fatigue, excessive bleeding, back and leg ache, bowel issues and nausea. For some women it causes pain during or after sex and affects fertility. Symptoms may occur only during menstruation, or more often. The only way to definitively diagnose it is through laparoscopic surgery, but it’s increasingly common for doctors to treat based on a working diagnosis. Despite endometriosis affecting one in 10 women in the UK (that’s 1.6 million people), there is no cure. Symptoms can be managed with hormone medication and/or surgery, but most women find they have to constantly compromise between symptoms of endometriosis and the side effects of the treatments.

The brilliant researchers are still very early on in their work (did I mention that research is woefully underfunded?) but they believe there may be multiple sub-types of the disease. This might explain why women experience it so differently; some have little pain but a lot of disease, while others can have debilitating symptoms but not much physical disease. Some respond well to hormone treatments or surgery, others don’t.

So, if 200 million women worldwide are thought to have it, why aren’t we talking about it? First, endometriosis doesn’t exactly roll off the tongue. Second, it involves really personal stuff about periods, sex, poo and fertility – things we don’t really want to talk about with a stranger. It can be embarrassing to discuss the messy parts of our privates

– but it’s vital that we do. Endometriosis isn’t life-threatening but, if it isn’t managed, it can start to affect work, relationships and confidence and become increasingly painful.

Although I have a particularly extreme version (10 surgeries and counting), my delayed diagnosis isn’t that unusual. The average wait is seven to 10 years, which can have a huge impact on disease growth, pain and mental health. The problem is that the symptoms are similar to other conditions, which can lead to misdiagnosis. Because it can’t be seen from the outside, it’s referred to

as an ‘invisible illness’, which makes it harder to understand and explain. Things that can’t be seen are often dismissed as a psychological issue and, sadly, sufferers can start to believe this, especially if we keep asking for help and are told it’s all in our heads (this still happens to me, even with a diagnosis!).

All the experts agree that awareness is key; if GPS were given more training about endometriosis, they’d be able to help women get a diagnosis quicker. If women knew more about it, they’d seek help earlier. If all of us were better informed about women’s health issues, everyone would be more understanding of their impact.

So, what every woman needs to know is: if your periods stop you doing normal stuff and over-thecounter pain relief isn’t working it isn’t

OK, normal or something you just have to live with. Go to your doctor, ask for further tests and a referral to a specialist. Make a symptom diary to show how it’s connected to your cycle and ask someone to come to appointments, to take notes and advocate for you, especially if you’re meeting resistance. In 2017, NICE (the National Institute for Health and Care Excellence) published new guidelines on endometriosis. They stipulated that healthcare professionals need to be more aware and alert to symptoms, listen to the patient and refer them to a specialist if they have persistent symptoms, even if the tests come back clear and the patient is 17 or under. If you’re worried, go back to your doctor.

A lot of myths are touted around, such as having a baby or hysterectomy are cures, or that you will definitely not be able to have children and it will definitely get worse. This can be scary, but it’s important to remember that the disease affects everyone differently and to understand your version. For my book, I interviewed a number of public figures, including Lena Dunham, Emma Barnett and Hilary Mantel, who have all battled with the disease for years, and each has had a different experience.

There are lots of lifestyle things you can do to help with symptoms: nutrition, pelvic physiotherapy, gentle exercise, acupuncture, meditation. The list goes on into the weird and wonderful. There’s no one-size-fits-all model to living with endometriosis. You may have to try things to find what works for you – but don’t give up, and if what you’re doing stops working, try something else. Sometimes, the act of self-care in itself is enough to feel more in control.

Something I wish I’d known earlier is the importance of recognising the emotional effects of endometriosis. Each flare-up or setback can bring a sense of failure and defeat. This is another reason why we need to talk about it more, to feel less alone and encourage those suffering to reach out for more support. The women I know with endometriosis, who turn up every day, hopeful and still trying, are as far from failing as possible. In fact, they’re the strongest, most resourceful people I know. ‘Private Parts: How To Really Live With Endometriosis’ (£10.99, Coronet) is out now For more help, visit endofound.org and endometriosis-uk.org

I STILL GET TOLD IT’S ALL IN MY HEAD – EVEN WITH A DIAGNOSIS