It was time to take matters into my own hands. And so my research began…
After joining several online support groups and reading countless blogs, I eventually landed on Nancy’s Nook, a resource that has been life changing for so many patients around the world. A self-guided learning library in the form of a website and Facebook group, Nancy’s Nook contains information collected and shared over many years. Files contain scientific studies on Endometriosis, hospital packing lists, questions to ask your surgeon, doctor reviews, and much, much more.
As I educated myself, the many red flags in my story 🚩 became crystal clear. I began to feel that my previous surgery experiences were pointless, as both of them left a significant amount of disease. A depressing thought, to say the least.
I learned that the presence of multiple endometriomas before my first surgery should have been an indication that I may have had advanced stage Endometriosis.
I learned that Endometriosis experts can detect a lot more clues from an ultrasound and other types of imaging tests than your average OBGYN.
I learned that the all too common birth control solution and other hormonal therapies only suppress the disease, alleviating the symptoms while it continues to grow.
I learned that there is an option beyond simply treating the symptoms: excision surgery with an expert surgeon and a multidisciplinary approach.
I learned about Ovarian Endometriosis, Bowel Endometriosis, Thoracic Endometriosis, Sciatic Endometriosis, Pericardial Endometriosis, and their symptoms.
I learned about other illnesses common in Endometriosis patients.
And I learned just how few surgeons possess the knowledge and skill to effectively remove it.
While my knowledge and distrust in doctors grew, I spent many months researching different surgeons. I read their philosophies on Endometriosis, compared patient reviews, and tried to decide who I felt confident could handle my case. It became clear to me that my case was complicated and I only felt comfortable with the idea of going to the surgeon who I felt was the best of the best.
I felt strongly that avoiding more failed surgeries was worth traveling out of state and out of network for.
After all, I had been through a lot for so little relief.
I began planning how and when I could make it happen and what I had to do in the meantime to prepare.
Had I not found Nancy’s Nook, I would not have known how best to advocate for myself, find better care, and identify the many red flags 🚩 leading me to this point. The best wisdom I can leave you with after reading this post is:
Doctors from world class hospitals aren’t necessarily experts in your ailment.
Research using reliable sources.
Write down symptoms and questions to bring to appointments.
And most importantly, don’t and ignore the red flags! 🚩
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Thank you for reading part IV of My Story! Wishing you all pain free, musical days always! 🎶
Sincerely,
