Kidney stone saga

I'm looking for anyone who may have had a similar experience with kidney stones, ureteroscopy, stenting or complications stemming from any of these procedures. ive been dealing with issues for almost 10 weeks now and would love to hear if anyone feels my pain.

a little background- i am a 35 year old female with a normal BMI and very small frame (5'1"). i had been generally healthy most of my life other than migraines and being diagnosed with a mild form of connective tissue disorder called ehlers danlos type 3, which mostly just manifests as joint hypermobility, general body pain, and migraines/fatigue. i am also a mid-level healthcare provider in the US. anyway, in 2020 i went to the ER with severe left sided abdominal pain, hematuria and nausea/vomiting and was diagnosed with two 4-5mm left kidney stones. i was hospitalized for 3 days due to uncontrollable pain and vomiting, until the decision was made to perform a ureteroscopy to retrieve the stone. the procedure went well, and i returned home with a stent in place which i removed at home about 3 days later. the pain i experienced during that time was just as severe as the stone itself, but gradually disappeared over a few days after i yanked the stent out in my shower. stone analysis showed calcium oxalate stones.

fast forward to february of 2022. i ended up back in the ER with the same symptoms but this time on the right side. i had a CT scan which revealed a 2mm kidney stone lodged at the ureteropelvic junction (where the kidney meets the ureter). no big deal, i was told by the ER doc. surely it will pass on its own. after a few doses of IV Fentanyl and phenergan my pain and vomiting was controlled and i was sent on my way with some flomax and instructions to drink lots of fluids. however, the symptoms never improved at all. i had a repeat CT done at my urologist about a week later which showed the stone still lodged in the exact same spot without moving, as well as hydronephrosis/hydroureter. i was encouraged to keep waiting it out, however i was in such severe pain throughout this time that life was just miserable. on march 10th i went in for another ureteroscopy and stone retrieval. the procedure was difficult according to my urologist, and he ended up having to perform a balloon dilatation at the ureterovesicular junction just to be able to advance the scope and retrieve the stone, which was actually 3mm, and was still way up by the kidney and hadnt moved at all (17 days!). he ended up placing an indwelling stent which i was told had to be left in for 14 days and removed by in-office cystoscopy. the pain during this 2 week period was excruciating and constant. i had the stent removed in office which was very uncomfortable. about two hoirs later i had an episode of pain that brought me to my knees, crawling on the floor crying for my mommy. i almost went back to the ER but took two oxycodone pills and waited an hour and it finally eased off some.

its now may 3rd (about 5 weeks after stent removal) and i have still been experiencing pain that feels exactly like the kidney stone did, but not as intense. its there every day, its colicky, and its in my right abdomen, flank, and groin, and sometimes hip area. after informing my urologist, he ordered an ultrasound which showed mild 'pelviectasis'. last week i had an IVP (x ray with dye) which showed mild swelling of the right kidney and mildly impaired drainage, according to my urologist. no stones or stricutres were seen. he does not know why this is happening or why im still in pain. i have a CT urogram scheduled for friday of this week. nobody has suggested to draw blood to check my creatinine/kidney function.

im also still constantly nauseated and have very little appetite. im very bloated with any food or drink intake. i hahe tried taking flomax and it does not improve the symptoms.

ive also been having severe anxiety wondering what the hell is going on inside me.

has anyone else gone through something similar?

i will update this post with my CT results in a few days.

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