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Jorja's Story

This story reflects the unique experience of a 15 year old teenager from Adelaide, South Australia, who suffers from endometriosis and IBS. Whilst reading this article, please note that these given details and information may not be applicable to everyone. Please consult a medical professional before taking any medicine or treatment as this article has not been verified by a medical professional.

LIFE with chronic pain

Following her diagnosis at 13, Jorja has been suffering with chronic pain. Her symptoms include painful periods, pelvic pain, back pain, sciatic nerve pain down her legs, constipation, and diarrhea. Besides the physical pain, her multiple rough hospital admissions and experiences have led her to develop PTSD. 


Recently, she began trialing a new treatment - cold laser therapy. Despite having only done one session, she states that she is already seeing results. 


Apart from treatment, another way that helps Jorja cope with pain is reading. She recommends a book called “Endometriosis and Pelvic Pain” by Susan Evans, who is a pelvic pain specialist based in Australia as well as a member of the pelvic pain foundation.


Upon seeing several similar social media groups sharing their stories, Jorja was inspired to create her Instagram platform (@endo.jorja)  in order to share her journey with endometriosis. When asked about her inspiration to start the account , she states that she hopes that sharing her story “helped even if it was just one person.”

dealing with stigma surrounding youth with chronic pain

Due to her chronic pain, Jorja faces a lot of stigma, especially because she is so young. Additionally, as she was born prematurely at 26 weeks, judgment and stigmatization had followed her through her whole life. 


“It’s hard for people so sick (yet) so young because people just assume I’m fine even though I have multiple chronic illnesses.”


To cope with the stigma, Jorja recommends people to voice their opinions and advocate for themselves. Furthermore, she suggests people with chronic pain to find a reliable friend, family or medical professional who can provide physical or mental support and aid them in times of need. 


“My advice for a young person in chronic pain would be to always advocate for yourself and know that doctors don’t always have the answers and that’s ok because every person is different and each person’s treatment should be specific to them.”

“I think you should know you’re not alone. I know that you might feel like you’re the only one going through this, but you have a whole community supporting you and going through similar things.”

                                                       - Jorja Van Der Hoek


Final note:

Want to share your story?

Even if its just a few helpful tips on pain management, we would love to hear from you! Please email us if you also want to share your experiences with chronic pain at our email down below 

Instagram: @teenpainconnect

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