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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 12 when the symptoms started and diagnosed at 21.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Horrible pain that ibuprofen would barely touch. And very heavy periods. I would faint and get so light headed. Ever since I’ve learned more about endo I find that what I eat and how and when I exercise heavily influences my flow but the pain levels often feel unpredictable still.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
It’s mentally taxing. I often feel like my body is actively working against me. I am working on feeling safe within myself because for so long it’s felt like my body wants me to be in pain. And it is so incredibly hard to explain this to many people in my life. Some accept it and are kind and others insist if I exercise more and eat a certain way that it will magically heal itself. They also like to suggest I just “get it taken out”, as if that isn’t a huge medical decision and just one I can make on my way to the grocery store some day.
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 two friends with endo and that has helped. My family is kind and supportive. The relationships I’ve been in have been different with some partners being super supportive to “hands off” to pushy that I “try to be positive.”
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Work, for sure. But now I just tell my boss I have endo. I used to just go to work and cry and push through. I don’t any more.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Nothing so far. I’ve tried herbs, cramp creams (even the one from Somedays), diets, etc. the only thing that helps is a hot water bottle filled with boiling water.
What do you wish you knew earlier in your journey?
That it’s okay to not be like others. That resting and listening to your body is okay. I gaslit myself for so long thinking my pain was normal period cramps. And I wish I had known before college that it was not normal. Instead it took me passing out from pain in the library to finally getting help.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
I only just started following some folks in the community. But it helps me not feel so alone. It confirms I’m not crazy. That this isn’t in my head.
Are there any misconceptions about endometriosis that you've encountered?
So many. The one that gets me is people thinking a hysterectomy will solve it and that I’m just being stubborn by not doing that.
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 it, connect with the community. For so long I told myself it was in my head. But as social media has grown I’ll find myself watching people’s videos about endo and I’ll cry. Because it’s not in my head. Trust yourself. Your body knows. So if you think you have it, find a support system and be kind to yourself.
