Cork endometriosis patient calls for further expansion of supports
Jessica Ní Mhaoláin had a number of surgeries during years of endometriosis treatment, including a hysterectomy aged just 27. She has said new plans for treating the condition will not benefit her. Photo: Moya Nolan
A Cork endometriosis patient has said new plans for treating the condition will not benefit her, as she called for supports to be urgently further expanded.
Ireland’s first endometriosis framework, published earlier this month, was greeted with mixed emotions by patients.
The framework, which was launched almost 18 months later than expected, aims to create a clearer care pathway and assist GPs in referring women for specialist treatment.
Care at supra-regional specialist centres in Cork University Maternity Hospital and Tallaght University Hospital has also been expanded.
An estimated one in seven women in Ireland lives with the debilitating condition, based on the most recent data from Australia.
Jess Ní Mhaoláin had a number of surgeries during years of endometriosis treatment, including a hysterectomy aged just 27. This put her into induced menopause.
She was “really disappointed” to see a reference in the framework which appears to exclude post-menopausal women. It states that patients experience "associated symptoms post-menopause” as a general guideline.
“All that will do is limit my access to pain relief, because they’re telling people that endometriosis doesn’t occur in menopause, when I know for a fact it does,” she said.
She is undergoing treatment in London, and has been told of “full recurrence” with new growths.
“When my pains started to come back, one of my doctors said to me, ‘you know it does come back’,” she said. "Why would I bother going to one of the supra-regional centres now?”
She called for such issues to be re-examined.
The plans also include interim funding for treatment abroad. This has already received applications, the HSE said.
“That funding is brilliant, it will work, but it just needs to be tweaked. The health minister needs to put the right doctors on it,” Ms Ní Mhaoláin said. The team she sees in London is not listed, meaning she will continue to pay privately.
“I know multiple women have been to the obvious well-known ones, but it strikes me as so odd that you just wouldn’t approach them,” she said.
A separate group, Her Voice Project, is planning protests next month, calling for two clinics in particular, in Greece and Romania, to be added to the list.
The HSE has said the list is continuously reviewed, saying it can only accept clinics under recognised accreditation systems.
Ms Ní Mhaoláin also said it was disappointing not to see greater support for doctors wishing to upskill and meet demand from patients.
“There is very little in it about upskilling doctors; they talked about it, but there was no detail, such as ‘as part of this framework, we are going to launch a fellowship’,” she said.
“My GP in Cork is really good, he’s had to educate himself on endo and not everyone is able to do that.”
She works in Dublin now, with Sinn Féin, but still travels back to see her own GP.
Patients have also shared frustration on social media about advice to take paracetamol for pain.
“Some of the advice is offensive, the reference to paracetamol just set people on fire, and you can understand why,” she said, adding this would “not come near” the pain she experiences.
Writing in the framework, health minister Jennifer Carroll MacNeill said: “(It) will help to raise awareness of the symptoms of endometriosis and improve the time for diagnosis for women and girls presenting with indicative symptoms.”
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