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 was only diagnosed last year with endometriosis and adenomyosis. Apparently it was on my medical file but I'd never been told that. I was 13 years when it started, 37 years old now.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Heavy bleeding and cramping/stabbing pains. They got worse over time. Currently, I have pain regardless of a period, I have endo belly (didn't know this was a thing), I'm constantly anaemic and depleted in other vitamins and minerals.
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?
Plenty of misdiagnosis and dismissive attitude. There was a lack of understanding and lack of compassion. To be told that I'm lucky that I've had children (which I am forever grateful for) was dismissive of my suffering.
How do your symptoms/pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I often feel like a 'fake'...it's a hidden illness that very few can understand. I often feel low, depressed, fed up, and sad when I can't even carry my little one when he wants a cuddle.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I have so much love and support around me. No one can fully understand unless they experience it.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I'm on medication that is stopping my cycles (dienogest) which is helping for now. I'm trying diet changes and holistic/home remedies. Just trying to find a happy medium.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Work is always affected as I have to go off sick (I'm a neonatal nurse). I can't manage going to the gym as the pain is debilitating.
What do you wish you knew earlier in your journey?
Wish I had an earlier diagnosis, which would've maybe led to better management.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes, it's an outlet to share what you're going through with others who know and empathize with you. It's a platform to share and learn from one another. And to let others know you're not alone.
Are there any misconceptions about endometriosis that you've encountered?
People thinking just have a hysterectomy and that'll solve it! What about early menopause? Poor bone health? Etc.
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?
You need time to process it. Share your journey because there may be someone who has valuable advice to share. But remember, not all treatments will work for everyone.
