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Hello, my name is Emmy and I’m 20 years old. I live in the north of Sweden with my mom, dad and goats.
When I was 11 years old I got my first period and the pain hit me at the same time. At the age of 13 the pain was so severe during my periods that I got on the pill. Even though I was on the pill, I got painful bleeding. That’s when the doctors thought of endometriosis. I had almost every symptom and thought I was going crazy. My doctors recommended me not to do surgery, because my pain could get worse, and I would get the same treatment either way. So when I was 17 I got an IUD, as well as the pill. 17 years old, struggling with anxiety and depression, with double hormones, not the best combination. The doctors have diagnosed me with endometriosis without an operation, which I’m really thankful to. The last 1,5 years I’ve had more pain, and pain without bleeding. Some days I couldn’t even get out of bed without help. So I have recently changed my IUD and is hoping for it to help better.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
My first symptoms were very painful periods. As I was getting older I got more symptoms, such as painful bloating, difficulty using the restroom, painful intercourse, and stronger period pains. I to this day learn that some of my pains and discomfort is due to endometriosis.
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?
I have always been well taken care of by the doctors. At the beginning they thought of other causes, but as my symptoms grew they started to think of endometriosis quite quickly. I’m very glad they have always taken me seriously and listen to me.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
It’s hard for others to understand the severity of endo. But I’m very blessed to be surrounded with good people that care. Some days all I can do is lay in bed, while some days I can go out with friends. With pain meds and anti inflammatory meds I managed to keep it under control.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I have doctors that listen to me and what I feel. My family and closest friends are a big part of me pushing through everything.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
I think all my life have been affected, but as I have had these issues all my grown life I can’t know what life could have been without it. One thing I’m sure about is that I could have worked more without the pain.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Heat has helped a lot, I feel that the pain doesn’t feel as “hard” when having heat on. Almost like the heat making it smoother if that makes sense.
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?
I don’t find physiotherapy helping. I also don’t find training more helpful.
What do you wish you knew earlier in your journey?
That I have to listen to my body, even though it’s eating that “bad” thing or laying in bed all day or not showering to day.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
I love the endo community, just reading about people having the same type of problems as me and knowing I’m not alone and weird. And seeing stuff work for your symptoms and trying to see if it helps me.
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?
If you suspect that you have endo, be strong, if your body says somethings wrong you have to listen, even if the doctors don’t. And if you were recently diagnosed, try, try everything you believe is worth, maybe you will find something that helps you.
