I’ve been looking for answers to my severe abdominal & pelvic pain since 2017. Since then I’ve had blood work, CT scans, MRIs, ultrasounds, endoscopy, colonoscopy, gastric emptying study, uterine biopsy, hysteroscopy, cystoscopy & much more. I’ve seen gynecologists, urologist, pain management, gastroenterologist. Everything always came back “normal” I have Complex Regional Pain Syndrome & Ehlers Danlos Syndrome so it’s always been chalked up to that until I found a Gynecologist that actually listened to me. On January 12 I had a Diagnostic Laparoscopy. He removed & burned endometriosis, scar tissue, lesions and removed my appendix. I had endometriosis “everywhere” and no scans, tests or procedures showed it.
Never stop advocating for your health!
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?
Symptoms started in 2017 & I got my diagnosis on January 12, 2024
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Abdominal pain, the pain has progressed to my back, legs, pelvic area and hips
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?
Oh yes, I explained some above!
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
The bloating ruins my entire day. The pain as well. I haven’t been able to have a job in years. It’s isolating, debilitating.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My immediate supporters understand and are amazing. I don’t think anyone will actually understand unless they have it themselves, but the ones that try and empathize with you are the ones that matter
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 found the absolute best doctor in the world I feel!!!! He listens, he cares, he feel for my pain!
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
All of the above
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 start Orilissa in 8 days! We will see how it goes. I had excision surgery on January 12th
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?
Birth control! Did not help
What do you wish you knew earlier in your journey?
I wish I knew about endometriosis sooner!
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
I’m brand new!!!!!
Are there any misconceptions about endometriosis that you've encountered?
“Just a bad period”
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?
Please find a doctor that takes your concerns serious! Do not give up until you are satisfied with your care and diagnosis.