I am new to my Endo diagnosis, despite prolactin levels that would indicate I’ve already reached stage 3 or 4. I’m newly taking progestin after a very ill-advised month and a half taking BC with .02 estradiol that made my pain exponentially worse.
I was diagnosed with IC 10 years ago and have Celiac, and have been very faithful to the diet despite thinking I could manage the shared frier for a while. . Got diagnosed two years ago with ADHD, which prompted its own “why the hell didn’t anyone suggest this dx sooner?” indignance.
For the last few years, I was alarmed by serum creatine being high in my bloodwork. My doctor at the time, who has an “institute” named after her, said that I just needed electrolytes. I reported that I would have shooting pain whenever I laid flat (this has gotten slightly better with a lot of targeted exercises) and they told me I just needed to take $60 fish oils.
In the fall, I was reeling from back to back celiac poisoning and food poisoning, and my egfr was suddenly at 70. As of this week, it’s 68, suggesting that irreversible damage has been done, and was progressing quickly.
I am having a pelvic MRI on Wednesday and will have a surgery consultation the following week. I know they don’t usually see the whole situations on the MRI but I’m willing to bet that at least one of my ureters is constricted.
I am horrified by the healthcare system that minimizes our concerns, ignores the diagnoses hiding in plain sight, and charges us out the nose for seeking help. I’m horrified that just believing I was only struggling with gut health and ensuing anemia has led to irreversible damage to my kidneys.
I haven’t really taken pain medicine- just edibles. I’m following the NAC protocol of a few days on and a few days off.
I feel validated by the diagnosis on the one hand but filled with rage and hurt on the other.
I remember finally getting answers and instead of feeling relieved, I mostly just felt angry thinking about all the years I kept being told it was stress, hormones, anxiety, diet, whatever. It messes with your head when you spend so long trying to fix yourself while something real is getting worse underneath. The validation is real, but so is the grief that maybe things could’ve been caught sooner.