The “gaslighting” many women have to endure before being diagnosed with endometriosis is one of the most “traumatic and utterly damaging” parts of the experience, according to Senator Lisa Chambers.

Endometriosis is a common condition that affects approximately one-in-ten women in Ireland.

The condition sees tissue - similar to the tissue that lines a woman’s womb - growing outside the womb and impacting on the ovaries, fallopian tubes, bladder and bowels.

On Lunchtime Live this afternoon, Mayo woman Ciara Chambers said doctors spent years telling her there was nothing physically wrong before she was finally diagnosed with endometriosis in her late twenties.

Her sister, Senator Lisa Chambers, also spoke about what it was like watching on while Ciara suffered – and called for greater investment in endometriosis care.

Endometriosis

Ciara said she was finally diagnosed in 2017 but her symptoms began at a very young age.

“I always had bad periods,” she said. “I was told, it’s normal, that is the luck of the draw and you are just one of the unlucky women that has to suffer with it.

“So, I did think it was normal and every month, I would be in agony missing school and events and stuff like that.

“When I got into my early 20s was when it started really affecting me. I was nearly all the time in pain. By the time I was in my mid-twenties, it was excruciating pain to the point where I would be passing out; I wouldn’t be able to walk with it.”

Diagnosis

She said her GP was adamant the symptoms were related to anxiety and she prescribed her anti-depressants.

After begging her doctor for an ultrasound, Ciara was eventually sent to a specialist.

“I eventually saw the consultant who did a transvaginal scan and I had endometriosis so bad that I had what is called kissing ovaries – which sounds cute, but it is absolutely not,” she said.

“It had grown so bad; the disease had overtaken my organs. My ovaries had stuck together and I had loads of cysts like the size of tennis balls. Eventually, I had surgery.”

Now, two surgeries later, Ciara is in a much better place -  with her treatment involving a Mirena Coil implant and taking the pill on a back-to-back basis.

“This is my life now,” she said. “I’ll probably need surgery again at some point in my life but for now, I am so much better than I was.”

"Gaslighting"

Lisa Chambers said the most damaging thing for women is how difficult it is to get a diagnosis.

“I think it is the gaslighting - the being told it is not happening, you are imagining it - that is just so traumatic and utterly damaging to the individual,” she said.

“Not having a diagnosis is so … knowing something is wrong but not knowing what it is, is really, really damaging to women.”

She said Ciara was told there was nothing wrong with her “time and time again”.

“She was told, it’s all in your head,” she said. “She was put on anti-depressant medication for a condition that didn’t exist and the proper investigations weren’t carried out – she wasn’t taken seriously.

“That is so common for lots of women across the country, where you are told you are being overly sensitive, you are being too dramatic, this is part and parcel of being a woman. Just get on with it.”

Funding

Senator Chambers said Irish doctors need specialist training on the condition – with increased funding for specialist services.

She said Ireland is far behind the UK, where endometriosis patients are offered full wrap-around services including counselling, physiotherapy and nutrition.