A woman who struggled with undiagnosed endometriosis for years has said she labelled a hypochondriac by doctors before finally getting the treatment she needed.
Irish model Hannah Devane Vukanić spoke to The Hard Shoulder this evening as Endometriosis Awareness Month draws to a close.
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.
Women’s experiences with the condition can vary, but a typical symptom is pelvic pain which gets worse during their period.
Other symptoms can include pain during sexual intercourse or pain when passing a bowel motion.
Endometriosis
Hannah said that, because she had never heard of the condition, she suffered in silence for years.
“Unfortunately, I just believed this was a bad part of being a woman,” she said.
“I think because it is such a personal area it affects – periods, toilet habits, all those things are not openly discussed – I think I was little embarrassed. I just thought, God I’m just unlucky and I have really bad periods.
“It wasn’t until I started getting other symptoms – for me it was extreme fatigue, pain in my back, pain in my legs – that I really was like, OK, what is going on?”
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She said she went to a range of GPs but was never taken seriously. She said her pain issues were always treated as separate issues – with doctors prescribing her different pain medications and antibiotics for different symptoms.
“I was actually labelled a hypochondriac at one point,” she said. “I was told that the pain was in my head and I was actually referred to a pain psychologist.
“The blame was often put on me by certain people. I have always been very tall and slim and I have had doctors saying to me, ‘well you work as a model you must be putting your body under too much stress. Are you starving yourself? Are you over-exercising? That’s probably what is causing your pain.’
“I just was in disbelief that it could kind of be put back on me because I am very healthy and none of those things are true.
“I was just thinking, why is nobody listening to me? I thought the GP was where you are meant to go if you are having issues, so it was quite tough.”
Hannah said it was when she went for a smear test in her 20s that a nurse started putting her symptoms together and asked her doctor to refer her for a range of scans and tests.
Even then however, the tests came back clear.
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“That is the problem with endometriosis,” she said. “Unfortunately, it doesn’t often show up in scans and test and the only way to formally diagnose it is through surgery.”
It was after she was finally referred for surgery that Hannah finally got her diagnosis – which she said, offered a huge sense of relief.
“When I finally got the diagnosis, I was obviously terrified to find out there was something wrong but I already knew that,” she said.
“I knew deep down what was going on wasn’t right, it wasn’t normal and to actually have some validation of that finally was a huge relief.
“It was easier because then I could explain to my friends and family why my social life suffered, why I wasn’t able to go out with my friends all the time – you know, the things I was missing out on.
“I could explain why I couldn’t do everything like everybody else.”
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Hannah was originally treated with a procedure called ablation or diathermy, where doctors “basically laser off, superficially, the endometriosis legions” - but she said they came back very quickly.
She said she then found a specialist surgeon in Birmingham who was able to carry out an excision surgery which she said has “really changed the quality of her life.”
She said her message to people experiencing similar issues is “always the same.”
“Get a second opinion, a third opinion a fourth opinion – whatever it takes to get the treatment you deserve,” she said.
“You know your body best and if you know there is something going on that isn’t right, you deserve proper treatment and here are doctors out there that have this skill.
“Maybe reach out to your local endometriosis charity for advice, keep going to different doctors, o your own research and self-advocate.”
