Does anyone have advice on pursuing a diagnosis and advocating medically for myself?
After years of almost weekly doctor/specialist appointments, I threw in the towel about a year ago. I was diagnosed with Fibromyalgia, IC and IBS. My symptoms seem to be only getting worse as time goes on and its getting rough. I don't know how to reddit and am just going to throw as much as I can into this, so apologies in advance. My symptoms include:
Bowel movements 5 plus times a day, often soft and without warning. (As a 25F I have shit my pants 4 times in the last 3 years... disgusting and embarrassing) there is frequently undigested food eaten within the last couple hours.
Depending on the day, peeing every 45mins to an hour, more than enough to interfere with my day.
Suspected Endometriosis (I refuse to the surgery to obtain diagnosis until I feel semi confident) Extreme pain during intercourse and weeks before period.
Insane bloating and stomach upset after ANYTHING I eat. I was put on a low FODMAP/IC friendly diet (very limited) and was just as symptomatic.
I am beyond bendy and have been suspicious of Heds for a while. I have monthly joint injuries and chronic pain in several locations (all joints not muscle).
Extreme and quick onset fatigue when working out. Within minutes of walking or lifting I will be bright red and covered in sweat, struggling to breath to the point I have to sit.
I dont have the patients to list more symptoms but I could go all day, these are the worst and most impactful. I have had a plethora of blood tests, xrays, ultrasounds, sleep tests for fatigue and 5 vaginosis panels in 6 months (because God forbid they listen when I say there's no way I an STI). I have seen by specialists and been bounced all over the place. There was never a single test to prove even with reasonable suspicion that I have IBS. Nothing was disqualified or looked into, even with a family history of colon cancer. I pushed back on the Fibro diagnosis because my chronic pain is in my joints and not muscles, but they insisted this was accurate. I feel there wasn't complete testing and they were looking for a way to be done with me. After years of doctor Google, I feel I have Heds and MCAS. I have always had medical anxiety, but the past 3 years have made it significantly worse. I want to pursue a diagnosis so I can receive proper treatment and hopefully increase my very low quality of life. Does anyone have advice on bringing this up to their doctor? Did you point blank ask to be tested, or diagnosed through elimination, for MCAS or Heds? I have tried to advocate for myself and deny/request test in the past and its never gone well.