Living with endometriosis: ‘I felt like a rope was wrapping itself tightly around my lower abdomen and pelvis’

It was during a family holiday as a young teenager that Dearbhail Ormond first began experiencing the symptoms of endometriosis. What should have been a weekend spent celebrating her brother’s birthday, was instead spent hidden away in her hotel room, battling excruciating pain.

“I felt like a rope was wrapping itself tightly around my lower abdomen and pelvis,” the entrepreneur tells Aideen Finnegan on the latest episode of The Irish Times Women’s Podcast.

“I was extremely sick… how I describe it is, you know, erratically unwell. I suppose that’s the first memory I have of it really interfering significantly with my life,” she says.

But it wasn’t until almost two decades after that weekend in the hotel, that Ormond finally received an official diagnosis. In her search for answers to her pain, the mother of one saw more than 20 different doctors. “Rheumatologists, immunologists, gastroenterologists, you name it, and to be misdiagnosed many times along the way”.

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While her diagnosis came as a relief, it was also a very lonely and isolating experience, so she turned to online resources for help. “I was looking for a community and connection and all I could find really on Facebook forums was quite negative,” she explains.

It was this search for connection and comfort that inspired her to launch the ‘frendo app’, a platform to help those with the condition to track symptoms and receive online support. The launch was soon followed by the ‘frendo@Work app’, a first of its kind, workplace programme for endometriosis, to help both employers and employees.

In this episode, we also hear from Johanna Huber, a physiotherapist and yoga teacher based in Co Cork, who also spent many years being misdiagnosed.

Huber discusses the surgeries she underwent to treat her pain, how she helps other women ease their symptoms through movement and relaxation and why she eventually sought medical treatment abroad.

You can listen back to this conversation in the player above or wherever you get your podcasts.