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I grew up like most people thinking painful periods were normal, I would be in the fetal position monthly assuming the pain I was experiencing though excruciating was the norm. One time I was at the mall with my Mom explaining how painful my cramps were, the next thing I knew I had passed out they were so bad. I went to a gynecologist after that and was prescribed birth control. I had accepted that as my answer for years until I went to college and was sexually active. The first time hurt and again like many of us are trained to believe I assumed it was normal and would get better, but that wasn’t the case.. After a while I went back to the doctor explaining sex hurt and the response I got were horrendous. Drink wine, use more lube, are you doing it right, the list goes on. Conversation like this in doctors offices happened for another 8 years before a doctor finally said the word Endometriosis to me. I finally had surgery and upon waking up in recovery all my suspicions were confirmed.. All those years of feeling crazy flashed before my eyes and a sign of relief to know it wasn’t all in my head.. The journey was not and is still not over as I have navigated years of pelvic floor physical therapy, trigger point injections, diet changes, mental health therapy and more.
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?
13 and diagnosed at 28
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Initially symptoms were painful cramps and painful sex, currently still deal with painful sex
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 was dismissed often and felt insane
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
It has hurt my intimacy and relationships and getting partners to empathize with my struggles
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I still struggle and feel my health care professionals give me the same treatment options on repeat when I’ve shared minimal improvement
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Relationships
What do you wish you knew earlier in your journey?
To advocate sooner
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes not feeling alone has been huge
Are there any misconceptions about endometriosis that you've encountered?
One we all likely know is not all surgeries are done the same
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?
Don’t give up and trust yourself you know your body better than anyone