Avatar universal

Pain even 1 month after a stint

Hi fellow Kidney stone sufferers,

I recently had my first laser lithotripsy with a stint (I have had 3 shock wave versions with no lasting problem).  I lasted one day with my stint, but I was in such pain I went to the ER (twice) and they eventually admitted me.  It was a Saturday night and I saw the on-call urologist the next day in my room (a partner of the urologist that gave me the stint) who agreed the stint needed to come out and attempted to do so in my room with an inexperienced nurse and 'jury rigged' scope (I quote him) because he could not get the proper tools available in his office.  After what seemed like ages of pain beyond any scale I have ever experienced (and I have given birth), and me screaming for so long and so loud every single nurse I met after that knew about it he finally gave up trying to get the stint and said I would have to have it removed under anesthesia.  After I recovered from the shock of the pain and the 15 minutes of tears they (the Dr was long gone) gave me a morphine pump and the urologist that put in the stint removed it the next morning.
At first I thought the pain I still had was normal, but after a week it had gotten worse and I knew something was wrong.  To make a long story short I continued with said urologist who after an x-ray and a renal ultrasound (where the tech even said she couldn't see the ureters, and when she pressed on my bladder I felt pain to my kidney), that urologist said there was nothing wrong with my kidneys and the pain must be from my back (which is an easy go to with me since I had a spinal fusion at 16).  He left me with no more pain medication and in more pain than I came to him in (which I mentioned to him and he just shrugged), and 'to prove it to me' said he would order a lasix renal scan (that they said they would call to schedule...over a week and still no call).  They had also been giving me tiny prescriptions of a week or less of pills at a time, which caused my insurance to deny the prescription my GP wrote and caused me weekend of hellish pain, after which, I assure you, something is still very wrong and it is not my back (unless something new and very bad happened to it during my ordeal, but this is not any kind of back pain I have ever felt, and is apparently connected to my bladder...???).  I ended up in the ER (again) during that weekend because of the pain and they denied me any medication (before the scan!?) and did a CT scan.  They said the scan showed a stone in the kidney (still?) that couldn't possibly be causing pain (?) and no stone in the ureter, so they said they couldn't help me and I needed to leave (no offer to try to figure out why, if not that, I was still in so much pain, despite my pleas)
My GP is giving me a referral to a new urologist for a second opinion, but has anyone out there ever experienced anything like this? How do you deal with pain meds and Drs (I hate being treated like an addict, thank you very much).  I am a stay at home mom with a very, very, active 3 year old, so having to sit still with a heating pad on my flank is really not a option.  I would love any advice people have to give!  Thank You!

2 Responses
Avatar universal
First off I am so sorry you're going through this. I too know what its like to be in terrible pain and to feel like no ones listening, and trying to care for small children and feeling that mom guilt on top of it all. I haven't experienced this particular situation before so I'm afraid i don't have much to offer there but i do have an extensive history of stones and infections. I can tell you that i have had pain before with a stone still in the kidney. I don't know how or why but I know it can happen. The second opinion is definitely a must. Obviously theres something thats being missed. Prescription drug abuse is such a rampant problem that i sometimes think dr.s look at everyone with that possibility in the back of their minds. I can understand it but it doesn't help when you're legitimately in pain and needing help. Ive had drs tell me on multiple occasions that i didn't have a stone simply bc there was no blood in my urine and when i pressed for a ct there it would be clear as day. If you're in pain then SOMETHINGS wrong, sometimes it takes a lot of persistence. I know your frustration and i hope you get answers soon, and remember we're always going to be harder on ourselves as moms than anyone else would be, including our kids. I hope someone else can weigh in with some personal experiences.
Avatar universal
The situation you find yourself in is not something that I have personally ever experienced. Let me be honest from the jump by saying that. I have however had kidney stones for over 30 years and just last Spring (2014) I was misdiagnosed when I had three stones and was told initiall;y that I didn't have any. I went to another Urologist (a civilian doctor as I am a VA patient) and the civilian doctor immediately took care of the situation for me, after I had suffered for about two months under the incorrect diagnosis. Going to see a new Urologist sounds to me like the BEST THING you can do, as from your description of what has occured to date if it's accurate, I'm not at all impressed with your initial one's handling of your situation. Good Luck and please let us know.
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