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 13 when I first got my period, and it wasn’t more than a year or so later that I experienced painful cramping and heavy periods on an irregular basis. I didn’t know anything else, so I figured this was normal. I was a dancer and practiced 12+ hours a week in high school which meant long days of strenuous activity and ended with lots of bloating. Tracing this back in my mind now, that was probably the first sign something wasn’t right. I was finally diagnosed in 2023 at 26 years old.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? what symptoms do you currently live with?
Cramping and abdominal pain, pain when using the bathroom, extreme bloating and abdomen distention, heavy heavy heavy bleeding.
My symptoms started with bloating and cramps but progressed to the list above. I live with daily pain even after excision surgery and is starting to run down my hip and into my legs.
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?
My doctors dismissed things and didn’t listen to my pain. I went to the er twice over the course of the years with extreme pain, thinking I had appendicitis but scans came back clean. The scans always came back clean!! My most recent doctor acknowledged the family history of endo that I have but then pushed for an IUD and said that, when that didn’t resolve the pain, that “maybe it’s IBS?”
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I try to be vocal about it and educate everyone that I can. Especially when this disease is so misunderstood and can show up in the ways I physically show up (to work, to social events, etc). I have found most everyone to be understanding though <3
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 a wonderfully supportive partner and she is really my rock on hard days. I also have really great and understanding friends.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
My surgeon is incredibly supportive and helpful, and has been the most understanding out of any doctor I’ve met with. It was such a great feeling being heard and listened to.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
I have limited physical energy now and have to really plan things out in advance to make sure I’m able to rest when needed. I miss concerts and going out and spending full days out walking and having fun.
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 have wanted to begin using a mobility aid when out and about but hesitate because I’m nervous about people staring. I use anti inflammatory meds to control symptoms and have been tracking what foods and beverages trigger symptoms for me. Carbonation + sugar is a NO!
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?
Exercise is something that makes my pain worse; using up energy by doing cardio or weights is something I would have hoped to help but it just exhausts me.
What do you wish you knew earlier in your journey?
That pain isn’t normal and advocating for yourself is the bravest thing you can do.
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?
Keep pushing for answers. Document everything!