Updated: Sep 8, 2021
This story reflects the experience of a young 24 year old woman from Adelaide, Australia, who is suffering from Endometriosis, IBS and suspected Vulvodynia and Vaginismus. 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.
Nicole’s first encounter with chronic pain started from the age of 11 when she started experiencing symptoms on her first period. However, she was not officially diagnosed with Endometriosis until her first laparoscopy, which occured in April 2017 at the age of 20. Later, at 24, she was diagnosed with IBS (Irritable Bowel Syndrome).
Nicole mentions that her symptoms vary and ‘don’t always all happen at once’. Some of her everyday symptoms include painful, heavy and irregular periods, pelvic pain/cramps, fatigue, nausea, painful intercourse, bowel issues, and sciatica pain.
When asked about her worst experience, Nicole shares a story of a time when she was at her boyfriend's mom's house and had severe cramps on her left side.
“I couldn’t walk, use my bowels, or breathe properly because the pain was so intense. My boyfriend and his mum decided to call an ambulance and I went to hospital.”
LIVING WITH PAIN
In terms of medicine, Nicole takes a range of painkillers according to her symptoms on the day: reflux, migraines, stomach pain, nausea etc. Other forms of treatment that she uses include using a wheat bag, YuYu bottle and Ovira tens machine for cramps and back pain. She also relies on peppermint tea, essential oils and emphasizes the importance of rest.
“Knowing when to rest is key because if I am in pain and overdo it with activity, I will be regretting it for days.”
As she was diagnosed with chronic pain at such a young age, Nicole further talks about the challenges she faces whilst dealing with the stigma surrounding young people with chronic pain. She mentions that many don’t understand that it's possible to be young and bedridden, even thinking she was faking her pain, by saying invalidating statements such as ‘it can’t be that bad’ and ‘it was just anxiety’.
HER SOCIAL MEDIA JOURNEY
Nicole finds social media platforms such as Instagram to be extremely helpful support resources as she is able to connect with others also living with pain, whom she is able to talk to without judgement. Furthermore, she finds the abundance of endometriosis specialists, organizations and experts on Instagram very useful for updates on facts and knowledge on chronic pain. Because of this, Nicole has started her own Instagram page @lifewithendo.nic in order to raise awareness for Endometriosis, as well as to share her journey and tips to support others going through the same/similar things.
“I have created such great friendships that I’ll cherish forever and it’s also been a great way for my friends and family to get a real insight of what I’m feeling rather than what they see when I am putting on a happy face in real life during a flare up.” Nicole says, when asked about the benefits of social media to her chronic pain journey.
HER TIPS ON DEALING STIGMA SURROUNDING YOUTH WITH CHRONIC PAIN
“Always be your own advocate because it is vital to speak up for yourself, fight for what treatment you need and to keep pushing”, Nicole says. “You are not alone and everyone's journey is different so don’t compare yourself to others.”
Nicole’s biggest tip on dealing with the stigma surrounding young people with chronic pain is to have conversations with those people and educate them, and if they are rude and ignorant, they obviously don’t truly care for you. She states that she is a firm believer that what you put into the world is what you get out of it. She adds that whilst you should be kind and understanding, it's important to know where your limits are and draw a line if some take it too far.
TO ALL THE BYSTANDERS NICOLE WANTS YOU TO KNOW….
“Chronic pain doesn't discriminate and a flare up can happen at any time. Endometriosis is being okay one minute and ill the next. Don’t judge or question someone in pain because, if they are showing you they are in pain, the levels are much more than what they usually deal with.”