Newly diagnosed, terrified and lost
Hi guys, this might get very very long so I’m sorry in advance. And sorry for my English, I’m exhausted and scared so most of this rant probably makes no sense.
I’m 32 y.o. female from Czech Republic. I’m newly pre-diagnosed with idiopatic gastroparesis, waiting for bunch of tests, GES included. It’s quite difficult to work around gastroparesis here in Czechia. It seems like we don’t really have the specific specialist here that are in US, neurogastroenterology or specialists for motility disorders etc. I’m constantly dealing with my GP (that is not very helpful) and waiting for appoitments by neurologist, nutritionist and new GI.
Does anyone also have neurological issues like loss of bowel and bladder sensation, weakness in limbs (this can be caused by malnutrition and exhaustion, of course) and partial numbness in genitals and lower belly. And is there anyone from Czechia or Central Europe?
All of these problems started cca 2 years ago with mild loss of bladder sensation - the urge to go and feeling of full bladder (my Endo doctor suggested Pudendal Neuralgia but physical therapy did almost nothing). These past two years I also developed short bouts of intense stomach discomfort and nausea like twice a month max during night, sometimes during day. Fast forward to a year ago, I started to feel stomach discomfort and lost the feeling of hunger but still could eat almost normally (Since childhood, I’ve always been such a foodie, overeating and with binge eating tendencies). Then in 07/2025, I’ve had my endometriosis surgery, in 10/2025 went to a health resort for a month-long post-surgery retreat - still could eat a lot but still had the stomach discomfort and intense nausea 2-3x a month max but after these “episodes” - that usually lasted from minutes to a few hours - could eat, could function etc. In 11/2025 I came back home and all of the typical problemst started - no hunger cues, stomach fullness, veery intense nausea (I also have a debilitating emetophobia so I’m always trying to avoid vomiting), frequent burping, stomach pain and losing even more weight (lost around 10kgs the year before 2025 but mostly because of stress and my stupid idea to try eating less to not gain the weight back, now I have 163cm and 49kgs). I got to my GP and GI, did gastroscopy, colonoscopy - all clear, GP prescribed Kinito and Torecan but I still could eat moderately and didn’t really have the constant nausea so I was taking Kinito only occasionally, Torecan caused akathisia. I also had a slight neuro reaction to Kinito. Few weeks ago, something’s changed overnight and suddenly I can’t eat/drink much, have constant nausea and fullness but mainly I lost probably most of the sensation in my bladder and bowels, basically can’t poop at all because I don’t feel the urge to go and also don’t feel the reflex to push so I can’t go unless I have a diarrhea (after taking high dose of Lactulose) which I can’t really feel too, can’t really pass a gass and have to push really hard. It feels like my muscles don’t know how to cooparate (It also feels “different” to cough or blow my nose now).
I feel so lost and tired because no doctor adresses this and no one cares, my GI abandoned me and my case for not being “specialized” enough, my GP automatically wants to put a NJ tube in me because I had mild side effects to every med I took (I have Gapulsid now and can’t sleep, weird) and she doesn’t see any other way without even trying more options and I’m terrified that all of this plus the gastroparesis might indicate some kind of serious neurological problem.
I’m sorry for venting here but I feel so terrified right now and honestly, I feel very lonely and alone in this because it seems like no one knows what to do or even what this is, here in Czech Republic. I only have my mom who is also so scared but has her own problems and without her I would be all alone. There are not many options in meds in CZ (for example Montegrity/Resolor is really hard to get and isn’t paid for by insurance and is really really expensive, so it’s a no-go for me without a job and very limited budget, Zofran isn’t known, Linzess too, antihistamines or anti-depressants are probably not even considered by specialists, Domperidone is now banned in Czechia, Botox or Gastric pacemaker are probably also not known and G-POEM is very rare and there’s only been like tens of surgeries done).
Thank you to everyone who read it all.