'I have a new life': Cork woman among 120 who went abroad for endometriosis surgery

Johanna Huber travelled to Romania in June 2022 to have an operation to treat endometriosis. Picture: Dan Linehan

This year, more than 120 women travelled abroad for funded gynaecological care, with the majority understood to be endometriosis patients.

In all, 107 women went to EU countries, including eight to Romania, and a further 14 to Northern Ireland, the HSE said.

Cork-based Johanna Huber has "a new life" following successful surgery in Romania. 

Endometriosis is a disease where tissue similar to the lining of the uterus grows outside the uterus, causing severe pain, including often damage to organs and/or infertility. It is estimated to affect one in 10 girls and women, with symptoms starting around a girl’s first period.

Ms Huber, 35, was recently diagnosed after years of unidentified symptoms, but her condition worsened last year.

“I would get severe pain with vomiting and shaking, cold sweats and nausea,” she said. 

"Insane cramps. It felt more like food poisoning with the vomiting, severe bladder spasms and my legs would go numb. I would not be able to get off the bathroom floor.” 

She added: “I had a bleed for eight months non-stop. I used pads and would bleed through that, when I was in the shower it would fall out of me like a waterfall.” 

However, five months after excision surgery fully removed growths, she is back working as a physiotherapist and said: “I feel like I have a new life. I have no pain and I didn’t expect that.” 

Supported by advocates, she opted for Bucharest Endometriosis Centre, whose lead surgeon operates on “around 200 patients” yearly, according to its website.

She was earlier treated at Cork University Maternity Hospital (CUMH). Her GP helped with this, but over time she became frustrated with waiting lists and increasing pain despite having a smaller procedure in December 2021.

She urged Irish consultants to refer patients abroad when necessary, saying sharing care should be normal in a smaller country.

“The [hospital] doctor told me to not do it, that I would regret it, which was all very difficult,” she said.

CUMH did 40 endometriosis surgeries last year, with 484 outpatient appointments this year. It supports women accessing treatment abroad “provided the steps as outlined by the HSE are followed”, a spokesman said. Recruitment has started for a supra-regional centre in Cork. 

Women can apply for reimbursement under EU Cross Border Directive or Northern Ireland Planned Healthcare Scheme. Ms Huber’s care cost €5,000, she said.

Advocate and medical scientist Kathleen King said of the HSE figures: “I’d say there is a very high chance they are travelling for endometriosis. Romania definitely, you can be sure that’s what it is.” 

She said women also travel using health insurance or pay themselves.

HSE manager for these schemes Catherine Donoghue said its data indicates the speciality, not precise treatment. However, she is aware of interest from endometriosis patients, and advised women to talk to GPs about care abroad.

“I would also suggest if women want to know about the Cross Border Directive that they contact our offices. We can guide them through it,” she said.