'I wish I had this new book on endometriosis before my diagnosis - why you need to read it'

It took me 20 years to get my endometriosis diagnosis.

When I finally first learnt what it was in 2019, at the age of 28, I was both enraged and exasperated by the lack of accurate knowledge and the sea of misinformation surrounding this incredibly common disease.

If only a book like this had existed back then. Endometriosis: Understand your symptoms, get the right treatment, reclaim your life is the debut novel by endometriosis educator, speaker and campaigner Jen Moore.

It is an impressive one-stop shop for everything about endometriosis. Backed up with scientific knowledge to empower patients, expert interviews with endometriosis specialists and real-life stories, it offers everything you need to know about the debilitating disease.

It gives those living with endometriosis or suspect they have it, as well as their friends and family members, all the information they could possibly need - from understanding what endometriosis is and what it’s not, to busting myths, recognising symptoms, navigating the healthcare system and accessing a diagnosis.

It took Jen 22 years to get a diagnosis, and it was during this struggle that she realised a book like this was desperately needed.

Jen told us: “Trying to research and look things up and understand what was going on in my body, everything was so conflicting. The answer that I kept getting was ‘we don’t know’.

“We actually do know quite a lot about this disease now, how it manifests and how to treat it in the most effective ways for management. And that was the biggest shock for me when I was doing my own research and reading for my personal journey...how much there is, it just hasn’t been pulled together in one place, in an accessible format.”

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It takes on average eight years and 10 months to get a diagnosis for endometriosis in England and Scotland, nine years and five months in Northern Ireland and nine years and 11 months in Wales.

In March, we launched the Endo the Battle campaign to amplify the voices of those living with endometriosis. More than 400 of you shared your experience with us via our anonymous survey, outlining issues from knowledge gaps within the healthcare sector, to dismissal of symptoms, delays in getting a diagnosis and long waiting lists.

In an open letter to health ministers, we called for urgent action to improve healthcare and the financial cost of living with the condition, including upskilling frontline medical professionals, committing to care for extra pelvic endometriosis and providing endometriosis education in schools.

Ensuring that endometriosis experts were a vital part of the book was key for Jen, giving those living with endometriosis access to expert information.

Jen said: “It’s hard to downplay the importance of it. It can change your life, it can save lives in some instances.

“This is such a complex disease and we’re starting to realise now it needs its own team. It needs people who devote their careers to this. The vast majority of the time they’re in operating rooms where we need them to be, they’re not the ones that we quite often get to hear from on social media or in articles, in conversations or in policy rooms, so for me it was really important to highlight that knowledge.”

What should you do if you think you have endometriosis?

The core theme of the book is knowledge and education. If you suspect you may have endometriosis, it’s important to familiarise yourself with some of the key symptoms, however these can vary on an individual basis.

Explaining the symptoms to look out for, Jen said: “Although we know that it’s not a period condition, heavy painful periods, especially pain that impacts daily life, is a really common one. But it's also important to say that that doesn't mean that you have to have heavy or painful periods to have endometriosis; some people don't and that is then a barrier for them to get a diagnosis.”

Painful bowel movements, Jen said, is another common symptom.

“It’s sometimes even rectal bleeding, constipation, diarrhoea, painful urination,” she added. “It could be chest pain. It could be nausea, dizziness, pain in your back, your hips, your legs. It really could be anything.”

Jen stressed the importance of tracking symptoms, using an app, a diary, or even emojis in a calendar app.

“It is really important, firstly so that you can start to understand if there are changes and notice these patterns for yourself, but also then for when you go to a doctor, to be able to show them the data,” she said.

“The next thing is to educate yourself - and I hate saying it because it's almost veering into victim blaming language. But if you understand what endometriosis is, if you understand what the correct steps to take, it's an awful lot easier to say: ‘I'd like to try this or I'd like a referral’”.

Jen also emphasised the importance of taking someone with you to any appointments you may have, explaining: “You shouldn’t have to take someone with you to be believed or to get a different treatment, but from experience, not just my own, but from the hundreds, thousands of people I speak to, taking someone with them helps.

“[That person] can be emotional support, they can sit there and listen, or take notes, because you're quite often getting so much information thrown at you. They can remind you of questions that you wanted to ask, or they can interject if they feel like someone is being a bit dismissive”.

Endometriosis: Understand your symptoms, Get the right treatment, Reclaim your life is available on paperback for £16.99 from leading book retailers, it also is available on eBook and audio. You can also find Jen on Instagram at Jen.dometriosis.