Social media can change the way GPs and other healthcare professionals understand chronic pain, says pain advocate Soula Mantalvanos, founder of the pelvic pain website Pudendal Nerve.
Ms Mantalvanos also runs a Facebook page, mostly for consumers, and is active on Linked In, where a lot of her interactions with healthcare professionals take place.
Motivated by personal experience, Ms Mantalvanos says pelvic pain is not well understood within the medical profession, something she hopes to address by sharing her story online
“It took four and a half years to get a diagnosis for my pain,” said Ms Mantalvanos. “Everyone I saw thought it was back pain.”
After reading the book The Brain that Changes Itself, she decided to get in touch with Adelaide-based Professor Lorimer Moseley, who was mentioned in the book.
He recommended a physiotherapist in her local area, and in just a few minutes she had an accurate diagnosis – she had been living with pudendal neuralgia.
“The right diagnosis made all the difference for me,” said Ms Mantalvanos. “I’ve been able to get the proper treatment, and my pain has become more manageable.”
However, she suspects the outcome might have been better had she found the right diagnosis earlier.
Ms Mantalvanos believes GPs and other healthcare professionals can learn a lot from listening to people who live with chronic pain.
The information exchange, she says, can also provide a voice for people with chronic pain who feel misunderstood, isolated and alone.
“There’s not a lot of awareness in the medical profession about neuropathic pain. Most practitioners seem to think mechanically, whereas we now know so much more about pain signals and pathways, and how they can be modified,” said Ms Mantalvanos.
“People who live with chronic pain can have an important role to play in pain education for healthcare professionals.”
With social media a global enterprise, Ms Mantalvanos has also been able to facilitate valuable networking opportunities across the globe.
“I connected a woman with neuropathic pain from the Netherlands, who messaged me on Facebook, with an incredible pain specialist, Dr Jan-Paul van Wingerden, also from the Netherlands, who contacted me after reading a comment I made on a Linked In forum,” said Ms Mantalvanos.
“Apparently she’s doing very well now. I’ve also heard from Dr van Wingerden, who tells me her case has been a great insight for his research.
“This is the power of social media.”