in 2013 at 7 years old i was hospitalized for the first time with severe abdominal pain, where they labeled it as anxiety. in july 2023 i was rushed back into emergency surgery for a torsed ovary with a 5cm cyst. during said surgery- my surgeon discovered endometriosis “cells” as she called it, but never put it in the post op notes. prior to surgery (dating back to 2013 but especially when i first started my period), i was always in pain and i still am. my doctors keep saying i’m okay- that it’s just a spastic pelvic floor but won’t do further testing as to why it’s like that.
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 say my symptoms started when i was 12, prior to getting my first period. it’s been about 7 months trying to get a diagnosis, but the way my doctors are i will definitely be out of high school and maybe college by the time i get one (im a senior)
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Horrible horrible abdominal pain that would take me out for days and sometimes a week or two on end. they’ve progressed in horrible ways over time, especially after my surgery. Daily i’m “complaining” (in my moms words) of severe abdominal pain, back pain, leg pains, nausea, and several other symptoms
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?
Hella misdiagnoses happening right now. From anxiety to just blatant nothing. Everyone has been so dismissive especially because of my age- even my gyn doesn’t believe me when i say somethings wrong
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
My grades have dropped from missing school, I’ve missed my sport so much to the point I can’t participate sometimes in competitions. It’s hard to tell people that this is going on- it feels as if I’m lying because of the lack of diagnosis and a lot of times nobody is willing to listen
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I don’t feel supported by my family, but my friends have been my lifeline through this whole thing
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Still searching, I’m so tired of misdiagnosis’s
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
School, 100%. marching band and drumline, my social life, everything. I have no motivation for anything and when I do it’s all cancelled by the fear of causing a flare up.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
My heating pad is my savior and same with the fetal position lol. I drink water like a mad person and occasionally it helps with the dizziness from not eating because of the nausea. Sleeping and resting when I know I need it and listening to my body has also helped. because I’m not officially diagnosed I don’t have much else i can do until then. It sounds stereotypical but yoga will help sometimes
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?
Medications (ibuprofen, alieve) used to help but not as much anymore as my body is growing used to them
What do you wish you knew earlier in your journey?
How long it would take and how bad it would actually be.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes!!! it’s so helpful to me to know that other people are going through/have gone through the same thing as me or something extremely similar. Although most of the people in the community are 10+ years older and have been diagnosed for a while, it’s still so helpful
Are there any misconceptions about endometriosis that you've encountered?
That it’s just a heavy period and would be cured by an IUD. I had a GYN tell me that because of my IUD my possible endo was “cured”