Endometriosis Awareness Month: Emilia Victoria from @LivingWithEndometriosis__
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March is Endometriosis Awareness Month and across the next few weeks we’ll be sharing personal experiences to highlight the challenges surrounding this complex condition. Wondering what Endometriosis is? Click here.
I first came across Emilia’s Instagram account, @livingwithendometriosis__, when looking for accounts to help me make sense of my own endo diagnosis in 2022. I was struck by the openness of her posts, how honestly and regularly she shared her experiences with surgery, pain relief and medical professionals, and how she turned these challenging experiences into educational resources for fellow people with endo.
Emilia now hosts regular not-for-profit events featuring guest speakers, panel discussions, yoga and endo education and has created a luxe sleepwear brand Willow & Body.
Tell us about your journey to diagnosis and what you experience with endometriosis
After years of having a “painful period” I was finally diagnosed with Endometriosis at the age of 24, via laparoscopy and excision surgery. After 11 years of chronic pain and horrible symptoms to finally have a diagnosis and answers was a huge relief.
In the 11 years of being undiagnosed, I was misdiagnosed with many other things, It wasn’t until I collapsed after a personal training session from debilitating pelvic pain, that I was taken to a hospital nearby, admitted and finally taken seriously. This hospital that I had never been to before happened to specialise in Endometriosis (not very common).
From severe pelvic pain, fatigue, vomiting, bloating, painful bowel movements, rectal bleeding, urinary issues, heavy bleeding, back pain, leg pain, as well as other health issues that have come along with my Endo, are just some of the things I’ve had to live with having Endometriosis.
What inspired you to create your account @livingwithendometriosis__ and start hosting events?
Essentially, I started my account @livingwithendometriosis__ to create awareness for all things Endometriosis, I’m so proud to be able to have done that. But now more importantly I want people to feel safe and supported, when living with a disease that is so misunderstood and has so much misinformation behind it, life can feel lonely and frightening sometimes.
Hosting these not-for-profit events has been life-changing and I’m so honoured to be people’s safe space. I’ve connected with so many beautiful souls worldwide, which I’m extremely grateful for.
This page and events have an amazing community where we constantly support and advocate for each other. I am so grateful for people allowing me to be a part of their journey somehow and them coming along for mine.
Sharing your surgery journeys has been so helpful and informative for others with endo—why did you decide to share them?
I remember when I started my road to diagnosis, I was extremely lost, Endometriosis wasn’t very spoken about, and I wanted to change that. I wanted other people in the same situation as me to have somewhere to turn to, I then became the open book I am today!
Recovering from surgery is never easy, having just recovered for my 2nd Excision surgery, I’m so grateful to have had the support for my Endo fam this time around!
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Aside from more (sorely needed) medical research, what do you wish you could change about how our society approaches endometriosis?
I think people understanding that Endometriosis is a whole-body disease… Endometriosis has been found on every major organ of the body, which causes several different impacts on someone life.
We must stop being led to believe that Endometriosis is a “Painful Period”. Whilst everyone’s pain and symptoms with Endometriosis is different and can vary, people need to understand that Endometriosis can cause major life changes and challenges, career, relationships, social life, studies, starting a family, mental health, financial situations and more!
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What do you wish people knew about the day-to-day reality of living with endo?
Every day is different for someone living with Endometriosis, the unpredictability of this disease can make it hard for us to know how we will feel day to day, one day we can be completely fine, and the next day riddled with pain and symptoms.
What are some of your insider tips for dealing with endo?
My go-to tools for pain and symptom management are, a TENS machine, hot water bottle, medication, comfortable clothing (nothing tight or restrictive), magnesium salt baths, pelvic floor relaxation techniques, comfortable sleepwear/loungewear and, of course, rest!
How can friends, partners, and family of people with endo best support them?
I always say the littlest things make all the difference! From heating us a heat pack, getting our medication or a simple hug!
Understanding the disease is a huge support also, being able to understand the impact Endometriosis has on their loved one’s life is so important. I always recommend attending appointments with them for support and to gain some knowledge.
