More research is needed on endometriosis in Ireland to give a true picture of how many women are affected, the Endometriosis Association of Ireland (EAI) conference will hear on Saturday.
EAI chairwoman Ilanna Darcy said the conference offers a chance for girls and women affected by the condition to come together.
“We want to try and give people hope, not have young girls being diagnosed with endometriosis and thinking it is doomsday,” said Ms Darcy.
She welcomed recent steps towards building a better service.
“What is sorely lacking in Ireland is data. We don’t have any proper data around how many people will really need to go to the [new] specialist centres in Tallaght and Cork.”
Ms Darcy has silent endometriosis which is asymptomatic but can still affect fertility.
“How many people are more like me versus the really chronic people, we don’t know.
Are there thousands of people with the really chronic endo where they can’t work and have daily chronic pain, are there hundreds? We don’t know.”
She said the issue of travelling abroad for care is sensitive.
“We don’t want people to be going abroad, but on the flip side you don’t want people to be staying at home and getting inadequate treatment.”
Ms Darcy said the national framework, which is under development, “needs proper funding” and will take time to embed.
Catherine Donohue, of the HSE unit for funded healthcare abroad, will address Saturday’s event.
“Romania is popular with endometriosis treatment patients,” said Ms Donohue.
“Anecdotally, the feedback is very good and we have not had any complaints.”
Siobhan Kelleher, from OnaWave Medical, will join a panel on women’s health innovation, which will be chaired by RTÉ 2FM’s Tracy Clifford.
Endometriosis affects an estimated 155,000 girls and women here.
Supra-regional services are being developed at Cork University Maternity Hospital and Tallaght hospital. There are now 16 ambulatory gynaecology services.