Ureteral stent pain: how much can / should I take?
January 22, 2022 9:21 AM Subscribe
I recently had a ureteral stent placed. Since the placement, I've had extreme pain before and during urination, and now after in the form of lingering back pain. I called my urologist and he said if the pain is unbearable he can remove it, but that leaving it in longer will help me avoid longer-term kidney problems. You're not my urologist, but maybe you've had to deal with this kind of pain before, or can help me make an informed decision?
The stent was placed during what I thought would be more of a diagnostic procedure to follow up on a finding of a possible tumor on a full body PET scan, which I've been getting after being diagnosed with low-grade non-Hodgkin lymphoma in April of last year. I've never had any kidney problems, nor any major problems passing urine. The reason for a referral to urology indicated on the radiology report was "mild left hydronephrosis secondary to area of mid left ureteral thickening and enlargement measuring approximately 1.7 x 1.7 cm with a craniocaudal measurement of 4.5 cm. This is concerning for malignancy. Recommend urology consult." So, I thought it was more about finding a possible cancer than it was about fixing a kidney problem.
I knew that stent placement was a possibility before the procedure, but had no idea the pain would be this bad. The first few times I went I felt like I was going to pass out and vomit at the same time -- something like an 8 or 9 on the pain scale within the first 36 hours, mostly in the abdominal area. Since then, I'm down to about a 6 or 7 before and during, a combination of abdominal and back pain, but with lingering back pain at more of a 3 or 4 level for hours afterward, to the point that I'm concerned that if I keep doing this, I'm going to have longer-term muscular damage in my back.
The doctor has me on tamsulosin 0.4mg 1x a day, oxybutynin ER 5mg once a day, and phenaopyridine 3x a day as needed, along with 600mg ibuprofen 3x a day and Oxycodone IR 5mg every 3 hours as needed, but I'm trying to avoid the latter as much as I can so I'm not constipated. I feel like I could really use a muscle relaxer of some sort to deal with the back pain, but I'm not sure if that would cause problems with the other things I'm taking.
When I read up on ureteral stent pain, it seems like I'm an outlier in terms of the severity of the pain, which makes me wonder if the placement was done correctly, or if maybe I just have a lower pain tolerance than I thought? I really want to leave it in for the 3-4 weeks the doctor recommended, but I don't know if I can if the pain remains this severe. Is there anything I can do to get through this?
The stent was placed during what I thought would be more of a diagnostic procedure to follow up on a finding of a possible tumor on a full body PET scan, which I've been getting after being diagnosed with low-grade non-Hodgkin lymphoma in April of last year. I've never had any kidney problems, nor any major problems passing urine. The reason for a referral to urology indicated on the radiology report was "mild left hydronephrosis secondary to area of mid left ureteral thickening and enlargement measuring approximately 1.7 x 1.7 cm with a craniocaudal measurement of 4.5 cm. This is concerning for malignancy. Recommend urology consult." So, I thought it was more about finding a possible cancer than it was about fixing a kidney problem.
I knew that stent placement was a possibility before the procedure, but had no idea the pain would be this bad. The first few times I went I felt like I was going to pass out and vomit at the same time -- something like an 8 or 9 on the pain scale within the first 36 hours, mostly in the abdominal area. Since then, I'm down to about a 6 or 7 before and during, a combination of abdominal and back pain, but with lingering back pain at more of a 3 or 4 level for hours afterward, to the point that I'm concerned that if I keep doing this, I'm going to have longer-term muscular damage in my back.
The doctor has me on tamsulosin 0.4mg 1x a day, oxybutynin ER 5mg once a day, and phenaopyridine 3x a day as needed, along with 600mg ibuprofen 3x a day and Oxycodone IR 5mg every 3 hours as needed, but I'm trying to avoid the latter as much as I can so I'm not constipated. I feel like I could really use a muscle relaxer of some sort to deal with the back pain, but I'm not sure if that would cause problems with the other things I'm taking.
When I read up on ureteral stent pain, it seems like I'm an outlier in terms of the severity of the pain, which makes me wonder if the placement was done correctly, or if maybe I just have a lower pain tolerance than I thought? I really want to leave it in for the 3-4 weeks the doctor recommended, but I don't know if I can if the pain remains this severe. Is there anything I can do to get through this?
Does a massage help? Muscle relaxant? Sounds like your doctor should be sending you to a different specialist to make sure there are no additional side effects from the placement, and whether the pain is really in your BACK, or just further "behind" in your body cavity.
posted by kschang at 9:36 AM on January 22, 2022 [1 favorite]
posted by kschang at 9:36 AM on January 22, 2022 [1 favorite]
Best answer: I'm a nurse but I don't know enough about your particular situation or the rationale for the stent to evaluate the need for having it. But, your pain level is not normal.
Do you have any trusted health care providers who could help you think through this situation? Maybe your primary care provider or oncologist could have a conversation with the urologist and help mediate between you? They would be better able to understand risks and benefits and translate that to you to decide next steps. Another idea: is there a nurse in the urologists office who you could have a longer conversation with? Some practices may have a culture where the nurse will just refer you right back to the doctor, but you may find that instead they can contextualize the risks and benefits more for you, or advocate for you with the urologist. Again, the pain does not sound to be within the norm to me.
Sometimes it's worth experiencing extreme discomfort to avoid greater harms but it's unclear to me what's going on here.
posted by latkes at 9:51 AM on January 22, 2022 [6 favorites]
Do you have any trusted health care providers who could help you think through this situation? Maybe your primary care provider or oncologist could have a conversation with the urologist and help mediate between you? They would be better able to understand risks and benefits and translate that to you to decide next steps. Another idea: is there a nurse in the urologists office who you could have a longer conversation with? Some practices may have a culture where the nurse will just refer you right back to the doctor, but you may find that instead they can contextualize the risks and benefits more for you, or advocate for you with the urologist. Again, the pain does not sound to be within the norm to me.
Sometimes it's worth experiencing extreme discomfort to avoid greater harms but it's unclear to me what's going on here.
posted by latkes at 9:51 AM on January 22, 2022 [6 favorites]
Oh and I'm sorry this is all happening.
posted by latkes at 9:52 AM on January 22, 2022 [2 favorites]
posted by latkes at 9:52 AM on January 22, 2022 [2 favorites]
Best answer: I have had a ureter stent. For me, the pain wasn't nearly as bad as it apparently is for you. After about 2 weeks, it pretty much went away (or I stopped noticing it), but then it started creeping back a bit the last week I had it in. I don't think I was on any painkillers after the first couple days. So, that's one data point for you.
Fair warning: having it removed is really awful.
posted by adamrice at 10:01 AM on January 22, 2022 [1 favorite]
Fair warning: having it removed is really awful.
posted by adamrice at 10:01 AM on January 22, 2022 [1 favorite]
Best answer: Just anecdotally I experienced horrendous pain for a few days with my stent -- yes, crying when urinating for sure. But that tapered down to a level I could live with for the rest of the 2-3 weeks I had it in. It hurt to have it removed, but nothing like that horrible pain from the first few days. (I have a vagina, so YMMV.)
posted by BlahLaLa at 11:32 AM on January 22, 2022 [1 favorite]
posted by BlahLaLa at 11:32 AM on January 22, 2022 [1 favorite]
Best answer: Have had one for a couple of weeks following a kidney stone removal and do not remember the experience to have been as painful as you describe. Definitely some pain and misery, a fair amount of OW FUCK moments during urination but no lingering back pain or anything like that.
posted by each day we work at 12:19 PM on January 22, 2022 [1 favorite]
posted by each day we work at 12:19 PM on January 22, 2022 [1 favorite]
Response by poster: Thanks for all of the replies.
I don't have easy access to professional massage therapy due to the pandemic, but I have tried massaging the area myself, and it hasn't helped. A heating pad does help with the residual back pain a little, but I hit diminishing returns pretty quickly after ~20 minutes of heat, and it gets really bad again the next time I go.
I do want to see if I can get a muscle relaxant prescribed to help with the back spasms, but I won't be able to get in touch with any of my doctors until tomorrow. I will try to talk to one of the nurses if the doctor's not giving me satisfying answers. I do have a family doctor I trust, but I doubt she'd be willing to override what a specialist is saying.
The last ~24 hours have basically been the same. Maybe a 1 point reduction on the pain scale before and during, but the cumulative effect is making the flank pain after much worse. The doctor did say there would be pain there, so I'm trying to reckon with the possibility that this is within normal parameters, even if it's above average for this kind of procedure.
I also continue to have red urine 4 days after the procedure. I discontinued the phenazopyridine two days ago, so I guess it's possible it's red from that and not blood. I'll mention this to the nurse when I call the office tomorrow.
posted by tonycpsu at 7:55 AM on January 23, 2022
I don't have easy access to professional massage therapy due to the pandemic, but I have tried massaging the area myself, and it hasn't helped. A heating pad does help with the residual back pain a little, but I hit diminishing returns pretty quickly after ~20 minutes of heat, and it gets really bad again the next time I go.
I do want to see if I can get a muscle relaxant prescribed to help with the back spasms, but I won't be able to get in touch with any of my doctors until tomorrow. I will try to talk to one of the nurses if the doctor's not giving me satisfying answers. I do have a family doctor I trust, but I doubt she'd be willing to override what a specialist is saying.
The last ~24 hours have basically been the same. Maybe a 1 point reduction on the pain scale before and during, but the cumulative effect is making the flank pain after much worse. The doctor did say there would be pain there, so I'm trying to reckon with the possibility that this is within normal parameters, even if it's above average for this kind of procedure.
I also continue to have red urine 4 days after the procedure. I discontinued the phenazopyridine two days ago, so I guess it's possible it's red from that and not blood. I'll mention this to the nurse when I call the office tomorrow.
posted by tonycpsu at 7:55 AM on January 23, 2022
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posted by tonycpsu at 9:30 AM on January 22, 2022