I joined Nancy's Nook on FB many years ago and found the CEC and Drs. Sinervo and Arrington. Dr. Arrington performed my excision. He is phenomenal!

I now with an amazing support group. I have made it my quest, with their help, to make a list of vetted endometriosis EXCISION specialists worldwide. Slowly but surely it is occurring and my list is becoming longer and stronger.

My diagnosis of adenomyosis came on November 1, 2021, almost two years post excision. I will eventually have a hysterectomy for that.

Thanks for sharing your story and honesty! It sounds like you’ve come to those meetings very prepared to ask the right questions. Gut instinct is so important - I’m happy you went with yours. I hope you can find the care you need and that the next surgeon will be more transparent and have better communication! Thanks for answering my question and I wish you all the best!

First of all, that is such an amazing field an surgical tool to be working in! As for my surgical journey, I heard about my first surgeon through some family friends that went to him and swore up and down how amazing he was (they had at least 5 previous surgeries with other docs and his was the last they ever needed). As for evaluating them, I took my time explaining in depth my symptoms and how I was feeling about the procedure and judged their responses (were they listening, taking detailed notes, giving me multiple options and not ultimatums, did they thoroughly explain each option and potential side effects of doing one thing vs another) also I asked how many surgeries they had performed/ how long they had been doing it for/ what percent of patients had to return for a follow up surgery within 3 years. I felt perfectly comfortable I would be in good hands (and I was)!

Recently I went to see a different surgeon (closer to me) as issues have returned and after multiple meetings, many many months, and even setting a surgery date, something just didn’t feel right. I wasn’t getting proper attention while sitting in front of him trying to explain my fears. I was brushed off for worries about bad side effects. I was told there was only one way to fix the issue of adenomyosis, which I am pretty sure I do not have,(presacral neurectomy) without being offered a chance to do a biopsy to check or even knowing I could do an earlier temporary nerve block to see if it would affect bladder function (bladder retention for life) and no information about statistics etc. Long story short I felt very bullied and like it was a scare tactic to force me to do something I wasn’t completely comfortable with. So I canceled that surgery and am currently focusing on some other health issues before I refocus on the endo.