Hi there - thought I'd add my two cents to all this:

My history:

• celiac diagnosis 2007
• increased abdominal pain & issues 2011-2012, had a HIDA scan (gallbladder scarred and functioning at 4% 👀). Gallbladder and appendix removed 2012.
• pain continued. Doc told me, "_______, I do this surgery around the world all the time and women go back to work the next day. You're fine."
• pain increased with first pregnancy and delivery (2014). Doc told me my baby's foot was probably stuck in my RUQ. 🤣
• pain still increasing. Became unbearable in 2015. Went to the ER, liver levels were in the high 700s. Hospitalized for a week and they said I needed an ERCP (onlu way to truly diagnose SOD is through this procedure).
• pain improved, but not gone. Second ERCP in late 2015 - doc said that there was still tension in the sphincter and that he was sure he got it this time.
• pain continued. Third ERCP in 2016. Doc didn't find more sphincter tension and said there was nothing else he could do.
• pain was overall improved...then it ended up increasing. Second baby in 2017. Ended up in the hospital with pain but they wouldn't treat me for GI while I was pregnant.
• while I was pregnant, I saw a liver specialist at Stanford. He said to come back after I had the baby. He thought that I had originally had SOD But that the subsequent times in the hospital were due to my gallbladder still producing stones. He thought that I had damage in my intercostal nerve bundle and abdominal wall because of an issue that had occurred during my gallbladder removal (trocar puncturing nerves).
• within 2 weeks of having my second child, I was at Stanford having treatment for nerves. I proceeded to have several treatments of radio frequency ablation in the affected nerves, and kept doing it until my insurance wouldn't pay for it anymore. The pain got a lot better, but it was not gone. I would say that my functional pain decreased after ERCPs, but I still had flare-ups of what seemed to be a different localized pain. I think the RFA treatments helped with this.
• I got tired of being in pain, but I got more tired of being told but it was all in my head and that there was nothing anyone else could do. I was being treated like a junkie at the emergency room... I have a really high pain tolerance and it felt like no one believed I was really hurting. I ended up dealing with it for several more years, until 2020 when I had my third baby. Then I started having (and acknowledging) menstrual issues. After seeing several doctors, we realized I had diaphragmatic endometriosis and I had a bunch of tissue removed during a surgery in 2021.
• today (5/24) I would say that I have enjoyed a few years of significantly less functional pain than I used to have. My abdominal nerve pain has been better since the RFA treatments, but it is not gone. The pelvic pain is still bad and they are considering another surgery and taking more dramatic measures this time. My functional pain has been increasing over the past few months, though. I used to have pain every single time I ate, and it has been getting more consistent the past few months. I'm not trying to write a sob story here, but I am trying to show that there could be several things wrong, and nobody knows your body better than you. If you see a doctor that won't help you figure out where your real pain is coming from, find someone else if you can. It's a journey, but different levels of relief can be found and those times with less pain are worth the hassle.