How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
I technically started my medical journey when I was 10 by visiting pediatric specialists, but never got an answer, and I gave up eventually. I restarted my journey on September 2020 at the age of 15, and after months of traumatic experiences, I got my diagnosis on April 26th, 2021, but that wasn't the end of it all.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Pain, a lot of it. My first symptom was extreme chronic pelvic pain, as well as some digestive issues. Once I got my period, they were really heavy and throughout the years I started developing other symptoms such as nausea, bloating, reflux, fatigue etc.
What was your experience with healthcare professionals during the diagnosis process? Were there misdiagnoses or misunderstandings? Did you experience any dismissive attitudes regarding your symptoms?
Oh my goodness, where do I even start. Which doctors HAVEN'T been unprofessional... that is a tough one to answer.
How do your symptoms/pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
It is very hard, especially during my period. Now that I'm living abroad and away from my family, I miss that support.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
Yes, now, definitely! Ever since graduation, I have felt very supported.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I am currently searching. I have my gynecologist in Brussels (my home city) but I have no one in the UK yet, so I'm still looking.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Tell me about it... sports. I used to be extremely active.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
I truly believe, even though it sounds a little strange, that graduating and moving away has been a huge help.
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
Going gluten-free didn't help me, yoga hasn't either, physical therapy either, breathing exercises and meditation either, personally.
What do you wish you knew earlier in your journey?
TRUST YOURSELF AND DON'T GIVE UP, YOU KNOW YOUR BODY BETTER THAN ANYONE ELSE, I cannot stress this enough.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
I have been following a few creators for a few years, but I haven't been able to fully immerse myself in the community.
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Are there any misconceptions about endometriosis that you've encountered?
Not really, honestly, because people around me didn't know what endometriosis was in the first place.
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
Never give up and always advocate for yourself. You know your body better than anyone.
