Endometriosis education programme to be expanded across secondary schools
An estimated 10% of girls and women worldwide have endometriosis. It is known as the missed disease as worldwide it can take up to 10 years to diagnose. There is no cure but symptoms can be eased with treatment.
Cate O' Connor, a primary school teacher in Limerick, said the reaction from girls in secondary schools has been great.
'We go through the basics of the menstrual cycle, and then we go into endometriosis,' she said.
'The other big message we're trying to get across to them is about what's normal and not normal, so the difference between discomfort and distress.'
They aim to present the science in an accessible way.
'The students see an awful lot of information on TikTok,' she said. 'There's a lot of information recently about contraception and taking the pill with adverse effects but then they go to the doctor (with period pains) and that's the solution that's offered so there's conflicting information.'
She added: 'They're getting information from TikTok which is not medically based and then they're getting information from their doctor and they're not sure what to do.'
Ms O' Connor and co-founder Kathleen King, a HSE medical scientist, have endometriosis but do not discuss this with the students.
'Some schools have said to us that with these kinds of topics sometimes having an outside person come in can help the girls open up more,' she said.
'They see us, ask us questions and it's not embarrassing because they're probably not going to see us again.'
She added the pair would also like to see interested teachers trained up. It is usually SPHE teachers inviting them in and they also worked with a PE teacher worried about girls dropping out of sport.
'That is one way the Department of Education could get involved,' she said.
The programme is inspired by New Zealand's 'what about me' menstrual education programme. The Irish programme is called 'MISE' which means 'me' in Irish and here stands for Menstrual Information Specialising in Endometriosis.
They run it as volunteers, taking annual leave to deliver the courses. Schools pay €1 per student who attends.
'It's a lot to do, you hear a lot of stories. It makes it worth your while when they come up and ask you the questions,' she said.
'I think the hardest part for us is knowing you are sending them more empowered to their doctor to follow up and more empowered to talk about it at home, but they are going to get caught in the system (with delays).'
A new national endometriosis service is rolling out, but the HSE has acknowledged recruitment challenges.
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