Toowoomba nurse Katie Harch on pudendal neuralgia diagnosis
When a 28-year-old Toowoomba nurse started experiencing pain after giving birth to her second child, she never thought it would take her on a $120,000 journey around the world to find a doctor experienced enough to operate on her.
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A 28-year-old Toowoomba nurse has opened up about her $120,000 medical journey of diagnosing her chronic pelvic pain as bilateral pudendal entrapment after an uneventful, planned C-section.
When she started feeling lower back pain after giving birth to her second son in November 2022, Katie Harch first wrote if off as regular post-epidural pain.
A mother-of-two, who never had a past history of illness, was a healthy weight and maintained her fitness as an orthopaedic nurse, she naturally expected the pain to disappear.
“But the back pain lingered on and on and on, and I started getting extreme tailbone pain, like I had broken it and sitting on bone,” she said.
“I’d start feeling like weird with numb patches here and there down my leg — mainly the left side of my body, and occasionally on the right side.
“There’s no other way to describe it, it’s like someone got a hammer and just went at me.”
It came to a head on Christmas Day in 2022, when she was at her neighbour’s house and almost passed out from the pain.
She went to a number of GPs, but they just dismissed it as a sprained tailbone.
“It was hard, I had one doctor tell me I had postnatal depression, another doctor say I had an eating disorder, another doctor thought my husband was abusing me,” Ms Harch said.
“I’ve never had any mental health problems before, I was suicidal from the amount of pain.”
She said she had to “become the CEO of her own health”, connecting with other women online who had experienced pudendal neuralgia, visiting 32 medical professionals, and demanding three MRIs, the final one revealing both her pudendal nerves were entrapped.
“I don’t know exactly what’s caused mine, but it wasn’t until I looked anorexic, my hair falling out, had skin rashes all over myself, had constant, irritable bowel, and was just demanding doctors to request scans that it happened,” she said.
Without the expertise to diagnosis the condition, let alone operate on it, her search led her to one of only a few surgeons in the world, Dr Oskar Aszmann, an Austrian neuro-plastic surgeon who specialises in bionic reconstruction and agreed to operate on it after seeing the final MRI.
Finally, with a diagnosis she is about to fly to Austria for the highly invasive three hour surgery on February 27, which will include two 20cm long incisions on each of her buttocks to reach the pudendal nerves.
In total, after 14 months of pain she estimates she will spend almost $120,000 on her medical bills.
She said she would not be able afford the medical bills if it was not for a very generous donation from someone in her community, which covers the flights, the surgery, and the recovery period in Austria.
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Originally published as Toowoomba nurse Katie Harch on pudendal neuralgia diagnosis
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