Adenomyosis: The health condition affecting one in 10 women that's not on the NHS Wales website

• ITV Wales journalist Gwennan Campbell reports

‘It’s just a period’, ‘it’s in your head’, ‘it’s called just being a woman’ - these are just some of the phrases women living with adenomyosis have heard time and time again.

Adenomyosis is a painful menstrual condition where the lining of the womb or uterus starts growing into the muscle of the womb.

Symptoms can include heavy or prolonged periods, severe cramping, chronic pelvic pain, bloating and pain during intercourse. 

On average, it takes between seven and 10 years to diagnose adenomyosis. It is a debilitating condition that affects one in 10 women, including myself. But not many people have heard of it and it is currently not on the NHS Wales website.

Dee Montague suffered with adenomyosis for over 20 years until she had a hysterectomy three years ago, which cured the condition. 

She has recently started a petition to get it added to the NHS Wales website.

“We feel that patients in Wales are being left out a bit at the moment. NHS England and NHS Scotland have been adding adenomyosis information to their websites but, as of yet, it's not available in Wales and we need it in Welsh as well to ensure that everyone who needs access to it can access it.

“For something that’s got such a high prevalence similar to asthma, diabetes and endometriosis, we need that information out there so people can find out more. 

“And it’s not just for patients in terms of empowering them to be in control of their health, it’s also about healthcare professionals and the wider community.

“I know I would have loved to have had something that I could just share with friends and family and colleagues just to say, ‘This is what I have and this is what I’m going to do next to deal with the situation’.”

The Welsh Government is looking to make improvements in women's medical care, appointing the first clinical lead for women's health earlier this year.

There are also already specialist endometriosis nurses in each health board. However, people like Dee living with the condition want more focus on adenomyosis.

• ‘It’s ruined my life’

One woman who knows first-hand what it is like to be dismissed by medical professionals is Kelly O’Shea. She was diagnosed with adenomyosis along with endometriosis six years ago and says the condition has ruined her life.

“I used to work full-time, I used to be able to go out with my friends, but now I can’t. I’m in pain every day. I take such strong pain medication that that’s my life," she said.

“I sometimes can’t get out of bed because of the pain. It ruins your social life, it ruins your family life, it ruins your relationships and even your work life."

Kelly and her partner are hoping to one day become parents. They started the IVF process two years ago, but complications because of the condition meant she lost both her fallopian tubes.

“It makes me feel so angry. It makes me feel annoyed that even in 2024 we’re going through this and there’s no cure, no real good medication that can help it, and there’s still not a lot of people talking about it. 

“If I had a cast on my arm or my leg, people would know something was wrong with me but because you can’t see it, people don’t see that you’re in pain. 

“I’ve tried multiple therapies - I’ve tried acupuncture, physio, I’m taking oramorph and other medication.

"I’ve also tried reflexology, nerve therapy. The list is getting so long now because you want to try everything you can before basically having a hysterectomy which, at my age at the moment, I just can not accept it. 

Dr Anthony Griffiths is a consultant gynaecologist and is one of only three endometriosis specialists in Wales.

He believes that a lack of training and exposure of the condition is one of the main reasons people have not heard of adenomyosis. 

“There’s often a lack of knowledge and understanding even amongst healthcare professionals about adenomyosis. One of the reasons is that, even as an undergraduate, you can only get two weeks training in obs and gynae," he said.

"So you only get a week of gynaecology to become a doctor and that doesn’t seem sufficient. 

“And even as a postgraduate within our Royal College curriculum there’s virtually little exposure or training for adenomyosis. So we’re even producing consultant gynaecologists with no experience, exposure or training qualifications in adenomyosis and I think that’s one of our big problems.

“It’s a frequently ignored condition or disease but actually it's a severe condition that affects people’s lives and causes misery, pain, pain on intercourse, pain on opening bowels, and affects fertility to a large degree.

“That definition of the evil twin of endometriosis is entirely reasonable. Many ladies that I’ve seen with adenomyosis have had children, and I always ask them what was childbirth like and they all reply to me saying ‘nothing like my adenomyosis pain’ - childbirth is easier and less than the pain of adenomyosis’ and yet these people are ignored every month or offered two paracetamol when this is awful pain.”

As it stands, the only true cure for adenomyosis is a hysterectomy, a surgical procedure to remove the womb (uterus). 

But Kelly is hoping that, by speaking out about her condition, there will be more research and that, one day, there will be a cure that won’t require removing the womb.

“I think if this was a male condition, I guarantee there would be a cure for it and professionals would be listening to them," she said.

"But everyone just says, 'Oh it's just a bad period, just get on with it.' But no - we shouldn't just get on with it because it's not normal to lose that much blood, it's not normal to be in that much pain.”

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