One in every ten women will be affected by endometriosis, but the disease is not widely recognized or understood in Ireland and many women who present with symptoms will be told that they are either suffering from something else entirely or that they're having mental health issues. Liveline has been hearing women suffering from endometriosis talk about how their lives have been affected by the disease and how they’ve been failed by the Irish health system.

Joe Duffy spoke to many women about the disease and how it’s affected their lives and one of the most affecting was singer-songwriter RuthAnne Cunningham, who spoke about her own experience of endometriosis and how for years doctors told her there was nothing wrong with her:

"I was on the contraceptive pill from when I was 17 to 30 and when I came off the pill, that was when my problems with endometriosis started, although it had been growing in my body, obviously. I ended up going, you know, in 24-hour-a-day pain every day for most of the month for one-and-a-half to two years. Two years it took me to get my surgery and my official diagnosis. I collapsed in gyms, you know, I was in so much pain I couldn’t walk, I had to cancel work."

RuthAnne spent so much time going to see doctors who kept telling her that there was nothing wrong, because they couldn’t see anything on ultrasound or MRI scans. And the fact that she looked "normal" on the outside meant that people would assume she was fine:

"'I would be in absolute agony and pain – and no one would have any idea because I’d have my make up on and I would be straight from the dressing gown and bed, crawled out of the bed to go to do, you know, my work and it was just the most horrendous – it wasn’t a way of living, it really affected my mental health, it really affected my work and it’s just such a horrific disease that, you know, so many women are battling."

When Joe asked RuthAnne to describe the chronic pain she felt every day as a result of the endometriosis, she didn’t hold back:

"I felt like I was being punched in the ovaries while barbed wire was ripping my insides apart, being stabbed in the back. I would sometimes scream with the pain. It was just absolutely horrendous."

When she was taken seriously by the Irish medical establishment, RuthAnne was told that it probably wasn’t endometriosis, it was probably something else and she reckons she knows why:

"It’s really hard to diagnose, so a lot of doctors want to search for everything else first. So I was kind of, ‘Oh, it could be that, but let’s look for hip problems, let’s look for, you know, let’s look for everything else but that.’"

Eventually RuthAnne had enough of doctors in Ireland telling she had everything from imaginary pain to harsh period pain and she found an endometriosis specialist in the UK. After a four-hour surgery, he told her that, yes, not only did she have endometriosis, but it was so severe that she was in danger of losing organs as a result of it:

"It was all over me. I had the worst kind, stage 4, deep-infiltrating endometriosis of the bowel, pelvis and bladder and he said to me, ‘If you’d left this any longer, you would have lost your bowel.’ And I had to go to the UK to get the treatment that I needed."

Part of the problem for Irish women like RuthAnne is that when you’re told repeatedly that your pain isn’t what you think it is and isn’t as bad as you’re making out, you start to wonder if the people telling you that might be right. You’re also so exhausted by it all that it gets very hard to think straight:

"For years I’d been told, you know, I was fine, ‘You’re fine.’ And you do think it’s in your head, you do start saying, ‘Wait, am I over-dramatizing this pain? Is this pain really as bad as it is?’ And then you get another, you know, stab to the back and you’re like, ‘No, it’s there.’ And you’re so fatigued that you can’t barely even see straight and you could rest for days and you don’t feel like you’ve rested."

Endometriosis is, RuthAnne says, a whole-body disease. It’s not just a pelvic-area pain, it’s not just a period-related pain. And Irish doctors don’t seem to get it or don’t have the resources to properly investigate and treat it:

"We don’t have the endometriosis specialists who are performing the successful surgeries that women need. So women are having to get multiple surgeries, they’re being offered this ablation laser surgery in Ireland, which is basically lasering over the top of the endometriosis, but not nearly getting to the root of it, so then they’re having to get multiple surgeries and then they’re ending up in the UK or America with an endometriosis specialist who says, ‘Ok, let’s do the wide excision surgery,’ which actually gets endometriosis from the root."

RuthAnne believes that we should be educating young girls to spot the signs and symptoms of endometriosis and let them know that the first sign of the disease is a painful period:

"If you’re having to medicate yourself, if you’re having to cancel school, stay home from school, stay home from work, that is not normal, that’s not the way periods are meant to be."

And given that the average time for diagnosis of endometriosis is 9 years, the sooner women and girls start investigating their symptoms, the better. It's extraordinary to hear the stories of women like RuthAnne affected by this terrible disease and how little is spoken about it. As an unnamed politician who texted Joe during the week said, if this issue affected men, it would be declared a national crisis. Which says a lot about our priorities in this country.

You can hear Joe’s full conversation with RuthAnne, as well as several other women affected by endometriosis, by going here.