Even though different people respond to stents in different ways, I suspect anyone who’s ever lived with a ureteral stent remembers the experience. I have had two, and both were, indeed, memorable.
Prior to undergoing a pyeloplasty, (a surgical procedure to correct a urinary tract obstruction) I was informed that a stent would be in place for about seven weeks. I also recall being told, or perhaps reading, that such stents cause “discomfort” in some patients. In my mind the term “discomfort” equates to nothing more than an annoyance or a nuisance, so going into the surgery I was not overly concerned. For the first couple of days following surgery, perhaps because of post-surgical pain killers, it seemed the stent would be absolutely no problem. I could hardly feel it. “This will be a piece of cake,” I thought.
Then, shortly after going home, I became increasingly aware that some apparently sharp object was attempting to drill a hole through the wall of my bladder. In fact, the image of a shish-kabob skewer came to mind. At the same time, there was the sensation that something was tugging on my right kidney, trying to pull it down from its usual location. It was difficult to find comfortable positions…and it felt as though gravity was becoming my worst enemy. Urination was frequent and painful, and my urine continued to be bloody for the entire seven weeks. Involuntary tears came to my eyes and waves of nausea were common. Finally, I discovered that sitting in a recliner and tipping it back approximately half way seemed to relieve the worst of the pain, and that allowed me to get a little sleep at night.
After seven long weeks, I welcomed the removal of that first stent. A generous application of lidocaine made the procedure entirely tolerable, and I watched on the monitor as the stent was grabbed and the upper curly-cue began its descent down through the ureter. Once I was free of the stent, the relief I felt far surpassed the minor discomfort associated with its removal.
About a month later, I accepted a second stent with guarded optimism. This one was placed following lithotripsy for a 1+ cm stone in my left kidney. It seemed logical to me, since this ureter was not compromised or swollen, that this stent should not hurt nearly as much as the first. Unfortunately, I was wrong about that. Once again, the same familiar painful and distressing physical sensations returned. And once again I sought relief in the recliner. The stent allowed stone fragments to pass, but I was elated to be rid of it after only three weeks.
The second stent experience left me with a new determination to do everything I could to prevent future stone formation. If making a few adjustments, such as drinking much more water each day, can prevent new stones and another stent placement sometime down the road, then I was ready to change old habits. Accepting the inevitability of new stones, then treating them as they become problematic, is no longer acceptable. My new plan is to be well-informed and pro-active and do all I can to discourage new stone formation. In fact, it’s the vivid memory of previous painful stents that continues to be the most powerful motivator. In a way, then, those stents are still serving a most valuable purpose, and I should remain grateful for them.
Editors note: Bonnie writes about her experiences as a stone patient in her posts. If you have experiences as a patient you would like to share, feel free to add a comment or send her an email at: ask@kidneystoners.org
Yesterday I went in for cysytscopy and right ureteroscopy with stent placement. The Urologist is fantastic, has a great bedside manner and seems to be sympathetic to the situation. Yesterday I was grateful for that, this morning I hate him and the damn stent.
No amount of explanation or Googling helped me understand the pain of post stent placement. None, whatsoever.
My story is a bit different. I have a long history of medical issues, the biggest being SLE (Lupus). It put me prone to kidney stones and kidney issues altogether. Over the last few years I’ve experienced many infections, a few stones, without the need for urological intervention, until now. I was very fortunate to be able to manage it with diet changes and fluid increases.
A few weeks ago I began having flank pain, with blood in my urine. So we started the routine care, nothing worked. I went in for CT scan to look for stones, nothing. But something curious did show up; a right ureteral mass. So off for another CT scan, confirming it to be a 2cm mass next to the right ureter, but not attached. I was referred to Urology.
Urology plan was to scope and stent in the event of a blockage and then return for a whopping 3-procedure surgery to biopsy and remove the mass during a retroperitoneal laparoscopy at the end of June. In the meantime I’ve had a PET scan to see the activity of the mass. PET shows no malignancy activity.
If you’re wondering why they requested a PET scan so soon, it’s due to my history of cancer. Ovarian cancer at 29, and bilateral breast cancer at 40. I’m 47 now.
So far the stent hurts worse than the original flank pain. Pain meds aren’t helpful and peeing is an absolute nightmare. If I could yank the stent out myself I would. I’m seeing Urology on the 23rd for post-op. Not sure if he’s removing it or leaving it until the surgery. And now, after hearing the PET scan results I’m not sure if they’ll even want to biopsy the mass since it’s technically stable on imagery.
I’m hoping for a relatively painfree day, if I can manage it.
Oh and the recliner at a slight angle is the most comfortable position, unless you have a cat. Then it’s the worst!
Thanks for reading and thankful even more for the forum to do so.
It is really a painful gphabit. I have stents formtwo weeks and i feel like im living in a world like hell. I went back to work after 7days after insertion of stent at my left kidney.mi still urinate with blood. And my back really a hell. Huhuhu
Aghhhh! I don’t get it?? My specialist told me that no matter how much pain I’m in I won’t do any further damage and can still work. Yet he also mentioned that he has personally never had a stent in his life. Apparently if I get pain from the stent I just take some painkillers and grin and bare it. The bastard wouldn’t even write me a medical certificate for me to be absent from work for a couple of weeks . My work includes heavy manual lifting and lots of walking around all day. Geez it seems these doctors live on another planet. I like many above in the thread have suffered more than merely “discomfort “. However I’m still going to work. I’m in debt. I have to pay the bills. Kids to support. I’m soooo tired. I’m so frustrated. I’m in a living hell. I swear to god I’m only drinking water and plenty of it from now on!! This is where I draw the line!! I DO NOT WANT ANOTHER STENT EVER AGAIN!! It’s not fun. Not that anybody in their right mind would want one though
Now 48 hours after an easy stent removal no pain at all, have enjoyed a few Brandy’s and coke and a round of golf without a twinge.All I can say is not everyone has it bad , mines was a pain free experience all the way so I wish the same for all you sufferers going through this.
Well I posted a few weeks ago how I had no pain what so ever from my stent, 10 weeks not a twinge a slight tickle in the bladder now and then but that was it so 2 hours ago I had it removed in docs surgery a little jelly to lubricate and in he went , very little pain grabbed it and pulled only felt a mild sensation of it sliding out and dressed and home all in time 15 minutes so easy , so far no pain at all.
I’ve been dealing with stents for four months. Friday was my 4th one & it has to stay in for 2-3 weeks but I’ll complain enough to get it out within 2 wks. I have no pain level anymore. The spasms are the worst I would rather have 50 Children naturally than I would ever have this done again terrible horrible scary
I had a stent put in as a result of a kinked ureter during a tumor removal and total hysterectomy. The 17 staples up my stomach were nothing compared to the pain of the stent. The best word I can use the describe the stent is “maddening.” It makes me sick to my stomach. I was on percocet for the pain but ran out at four weeks post-op and doctor would not refill due to the addictive qualities of that drug. The urologist scheduled an appointment for over eight weeks post-op to have the stent removed which my GYN surgeon believes is not needed for a bruised ureter. Post-op instructions indicated it would be removed in six weeks. I am currently “fighting” with the receptionists at the urologist’s office just to get word to the urology team that I cannot tolerate the pain and discomfort anymore – that the stent need to be removed ASAP. I started my calls three days ago, still nothing. My surgeon is now in the mix and will hopefully make some leeway. The stent is dreadful. Pain upon urination that makes me tense up my entire body. Pain upon bowel movement, as if my bowels are also going to leave my body. The stent pinches my bladder, feels like it will come out of my vagina at times. Sometimes I can feel the pain in my back. I am not sleeping at night, have night sweats and am just overall so unwell. I cannot walk for exercise… can’t stand long to cook dinner… cannot bend, squat, sit on the floor, get up off from the couch, etc. I have not driven (because of the pain meds) for over a month. I have two businesses that I need to operate and cannot because of how tired I am and the affects of the pain meds (motrin at this point that does not cover the pain). I cannot recover from my surgery until the stent is removed.
Bless your heart. I feel you. I’m 15 weeks pregnant now and had my stent placed at 8 weeks pregnant.I have a 3cm, yep, CENTIMETER, kidney stone in my right kidney that was blocking urine flow. I ended up with hydronephrosis in the hospital for days. I passed 12 stones in one night. The absolute worst pain I’ve ever experienced. I had to have the stent placed immediately, because I’m pregnant there’s nothing else they could really do without risking the baby. My pain meds are very limited because I’m pregnant and I can’t take the medication that relieves painful urination either. I’m basically having to suck it up. The stent has been an absolute NIGHTMARE!!!!!!!!! I can’t do anything. I have two small children that need my attention and if not for my husband taking over completely, I’d be dead or they’d be completely neglected. Like you said, I can barely get out of a chair by myself. I have a very high tolerance to pain too, and this has completely knocked me down. Just walking around, I feel like I have to hold myself so my bladder doesn’t come out of my urethra. I cry every time I pee. It seems like the more water I drink, the more pain I’m in. The more water I drink, the more I feel the need to pee, yet the slower it comes out. If I drink a soda or something, my flow is very strong and it’s not as painful. I think the worst part is the pain in my lower bladder and urethra. It’s like I have a razor blade trying to come out at all times. For the last few days, I’ve had more discomfort in my kidney than I have had in a while. The worst part is I am supposed to have my stent replaced in a few weeks. It’s been in for a total of 3 months then. And I’m having a new one put in at the same time. And I have to have it for the remainder of my pregnancy. I’m due in October! It’s May 2 now. It’s going to be a long, painful, miserable pregnancy. I’m getting depressed because of the pain and my inability to even take a short walk! I also work full time… basically i hate my life right now.
I forgot to add, I have to have my stone surgically removed after I have my baby. They have to go in through my back and cut into my kidney to actually get the stone because of how large it is. My urologist almost seems entertained by the size of it, he can’t believe how big it is. He does seem sympathetic to my pain thought and he and my OB are working together as a team to keep me as comfortable as possible. Not happening though.
I had a stent fitted 8 weeks ago , 2 weeks ago I had a 5mm stone removed from my left kidney I get my stent removed in 3 weeks , all this time I felt nothing , no pain at all did not know it was there, I slept well and played golf which gave me a little blood in the urine for 1 day then back to normal absolutely no pain what’s ever
I have had my stent for aboutn3 weeks, I have about 5 more weeks to go and I cannot wait to get rid of it. Whenever I go urinate right after is excruciating and the bladder spasms are the worst, not to mention now I leak urine once in awhile. I shutter thinking of the weeks I have left it’s unbearable. I was told by the doctor that most people don’t know they are in I say BS…..i constantly urinate blood…i am miserable.
You and me both. Had one put in yesterday and it is pure hell.
I have my stent in for three weeks. This is the second time in a month and a half. It’s terrible the urge you have to pee every five minutes. I can’t even work. If I sit it’s not to bad. Standing is terrible. I can’t wait for this to be over.
I agree with what everyone said so true I have 12 kidney stones and 2 are stuck (7mm & 2mm) got that damn stent and can’t stop peeing myself (uncontrollable) embarrassing to say the least I had to buy adult diapers (I’m too young for that) but better Then wetting my pants Any ideas
I’ve had mine for 2 days due to a 6mm kidney stone. My laser surgery was unsuccessful. Evidently the stone had to be pushed back up to put the stint in. There’s no way they routed the stent around the stone that was halfway down my ureter. Anyhow, I’m not having much pain walking and setting. My pain is when I pee. It feels like my kidney is being ripped out every time I pee and god forbid if I try to hold it. When I feel I have to pee, I better be whipping it out right now wherever I’m at or it feels like my kidney is exploding. With all the instruments that were rooted up my penis, it burns like I’m pissing razor blades. I’m just tired all day and feel exhausted. 12 more days I get Lithotripsy and probably get the honor of keeping the stent a couple more weeks. I’m like you all, I just want it all over and from this point forward I will be guzzling water until I die.
I forgot to mention the NSAID I take is Diclofenac ER, 100mg once every 24 hours. I will say on this through my stent removal. I was given one dose of antibiotics prior to the surgery in my IV but I take none now. I will take antibiotics the day before stent removal, the day of stent removal and the day after to prevent infection.
I’m here to give a “POSITIVE” story about my experience with a ureteral stent and the excellent care I received from a phenomenal urologist who performed my laser lithotripsy.
I could not disagree more with a recent post I read about stenting being easier on the doctor because it’s a time saver. In my opinion from all the research I’ve done as well as my own personal experience, nothing could be further from the truth. Many many patients that are not stented return to the emergency room for emergency pain
relief because they have fragments that are stuck/collecting in their ureter. I personally know two people who this happened to you and I have read countless other stories as well. If anything the stent is used to ensure any residual pieces pass with as little pain as possible, reduce risk of blockage and protect the very fragile ureter from damage. Also Laser lithotripsy is often more successful the first time around where as shockwave therapy sometimes has to be done multiple times and often has patients returning soon after in extreme pain because they’re trying to pass large fragments of a broken stone. There are also risks with shockwave such as hematoma to the kidney and bleeding. With laser litho there is risk of general anesthesia and ureter damage but it’s rare – just be sure you have an experienced surgeon.
I just had laser lithotripsy for a 7mm stone located in the middle of my kidney. I currently have a double j stent which will be removed next week. I have never had a kidney stone stuck in my ureter however I did go to the ER 9 months ago with severe flank and abdominal pain. And blood in urine. They saw the stone but my kidney was not inflamed and there was no ureter blockage. Therefore no emergency surgery required. I was sent home with pain meds.
Due to the size of the stone (I’m also a small framed woman) I was told I’d never be able to pass that stone on my own and someday it would likely start to travel and get stuck and cause the telltale excruciating pain that all experience. Not only that but I would not know when this would happen, where I’d be and who would be the one to ultimately remove it. I don’t like those odds.
I would experience some discomfort off and on in that left kidney over the last nine months as I met with various urologists for opinions on what it is I should do. There are many who are in a similar dilemma and have a kidney stone knowing that they can’t pass it on their own and nervous that someday it will begin it’s dissent. Others choose to ignore it and will deal with it when and if the time comes. To each his own!
I had one doctor tell me if he were me he would just watch and wait. I had several doctors tell me I could try ESWL (one even said he would avoid a stent at all costs if he was me) but none opted to determine the chances of success with such a procedure, that is determine the density of the actual stone! Harder stones do not break up easily with ESWL. Or they break into smaller stones that are very hard to pass.
I had two other doctors tell me they would not bother with ESWL – as it likely would not work however there was the potential that they may not even be able to access the stone in my kidney and they wouldn’t know until they got in there. I asked one of those doctors – why did the other doctors recommend shockwave if he didn’t think it would work? He rubbed his fingers together indicating money — essentially saying that they knew shockwave could fail and they would just have to go back in with a laser anyway a second time to break up the stone that they left behind.
After meeting with the number of doctors I did, I still did not feel confident in the answers I was receiving or the difference of opinions so I decided to head into one of the best hospitals in the country located in New York City and met with a doctor who
is the Professor of Urology and Director of Endourology and Stone Disease, within the hospital’s Department of Urology. His clinical interests include surgical and metabolic treatments of kidney stone disease, minimally invasive urologic surgery, upper tract transitional cell carcinoma/urothelial carcinoma, ureteral strictures, and a few other conditions.
He took a great deal of time with me as we exchanged information and various scenarios, risks and benefits to my options. He also determined the density of my stone on my catscan with a calculation and it was indeed too hard for ESWL.
He he was open and honest with me about ureteral stents and the likelihood that I’d experienced post surgery pain and discomfort. Number one because I never passed a stone so the pain after may mimic pain similar to passing a stone, number two because the instruments used would cause inflammation and third the pain and or discomfort of the stent which was a necessity. I left his office and called him 2 days later to schedule my surgery.
I had the surgery done under general anesthesia in the hospital – came home that night. The surgeon broke up the stone, grabbed a few pieces for analysis which was sent to the lab and he blasted the rest to dust. He said it was a very hard stone and shockwave therapy never would’ve worked. He is almost positive it was a calcium oxalate monohydrate stone.
I take a strong extended release NSAID once a day. Because narcotics like Percocet and Vicodin make me very sick to my stomach, I was so worried about pain control. I opted to use Tramadol taken with Zofran. I only needed 3 doses. One the night I got home and 2 doses the following day and then I decided to try and go without. I have had no need for pyridium or Flomax or detrol/ditropan.
Yes there is discomfort upon each urination. Yes there is a lot of blood in the beginning which slowly subsides but the blood is not an indication of anything other than stent irritation. The sensation when urinating in the kidney is very uncomfortable but it subsides once you stop urinating. At least for me it does.
I found lying in a recliner the first few days worked well and I have two heating pads one for my back and one for my stomach. And I rest. I don’t know if I have a high pain tolerance or not or why there is such a high variability between patient experiences. I will say that I think some of it can be surgical skill and experience, choice of stent as well as anxiety. Also some people don’t follow doctors orders, take their meds, rest and keep drinking water.
After reading so many horror stories about the surgery as well as stents I was so terrified. But I can tell you that I am one of the people (one of the 50% at least!) that did NOT have a horrible experience. And I would not hesitate to do it again if I have another stone I needed removed.
I would never try ESWL – shockwave therapy.
Now I will work on prevention to be sure I never get one again!! 🙂
Good luck to all.
Would you mind passing me the doc info please? I’m in NYC.
I too, am laughing so hard (in my head cuz it hurts too bad to really laugh) at the descriptions. It literally feels like they inserted a tiny person in my bladder and gave him nails and a hammer and every minute he’s forcing another one in. Not normal nails… big nails… with rusty jagged edges. It hurts SO BAD! Every time I close my eyes to sleep (I’m so so tired) I jolt back awake because of the tiny a$$ hole hammering away. I need to pee so bad, but am too scared after reading the comments LOL! Thanks for at least distracting me for a little bit while I slowly go crazy with pain. The MEDS ARE NOT GOOD ENOUGH!!!!! :,(
Ah, I too am convinced this stent and others of the past were about to make me pass out with pain — and yet I am grateful that such an instrument is possible. My main reason for writing, though, is to say thank you for a humorous perspective on this painful topic. Appreciate the common bond You made me smile.
There is a stent up my right ureter right now. It is the 3rd day before laser blasting in another 4 days of some 3 stones, each averaging 1 cm in size. Urine is still bloody and not easing. This ureteral stent is a crude device and all Doctors are truly lying that it would only cause some discomfort on some. In my case, the bladder pain especially after voiding is excruciating – I have to upgrade the painkiller from Paracetamol to Diclofenac SOD to handle it. In between voiding, the pain is not there. The antibiotics is a must to prevent any infection during these 7 days. There would be a stent replacement after laser blasting in 4 days’ time – another agonising journey for a week.
The left kidney with 2 stones, biggest being 1 cm, was blasted via ESWL without stenting just 4 months ago – almost problem free until the last 3 fragments were stuck at the bladder end of the ureter. A subsequent lithotripsy under GA was necessary to remove them without much post pain. This ESWL procedure avoiding stent would be suitable for those whose stones are at the upper lobes of the renal pelvis I.e. fragments would likely pass via urine flow. The temporary pain with stones passing through the ureter is many times lesser than the traumatic pain caused by the stent. Take this non-stent option even if it requires a subsequent lithotripsy.
I have a hunch that stenting benefits the surgeon more than the patient. With the dilated ureter via stenting, ESWL or laser with stent requires less blasting work in the kidney as compared with one without a stent. Stent can accept bigger stone fragments. Time to them is money – they charge the same with shorter blasting work and stenting gives them additional revenue. To the patient, stenting helps a bit in flushing out the stones in a quicker rate but the trauma caused by stenting and lasting weeks may not be worth the while. Just my opinion.
We can put ppl on the moon, yet we can come up with a better way to do this procedure….lets do it the old fashion way…cut me open and do what you have to do…I horrible having something stuffed down your penis over and over bc the there were complications to stenting….this really does hurt doctors if you are reading this…..I you the pain agony and pain
That is my thinking… all the technology and medical advances we have and people with stones have to suffer with stents on top of the stone!?!?!?! Come on!!!
Holy smoke yes, all that is said is true.I had a stent putin on Tuesday morning, by Tuesday afternoon, I was admitted to acute emergency for urine retention…this my friends is true pain…I would rather saw through my penis with a dull plastic butter knife….spent the next 3 days in a hospital flushing my bladder bc of blood clotting .fro.Thefrfrocausedcstent csused my conditiom.
I had a stone removed from my right ureter yesterday. I was hopeful not to have to have a stent but the doctor informed me that it was necessary due to size and location of stone. I am incontinent now. I looked at my urethra with a mirror and the curlicue from the stent is on the outside of my urethra. That can’t be right, can it? I can literally feel it when I sit down. And there is no way to control the urine so it just keeps coming out. The on call doctor just told me to “pull it (the stent) out”. Thoughts?
That just made me cringe so hard I almost turned inside out… I’ve heard of the stents that are visible that people can pull out on their own. I have a double J stent. Mine isn’t like that I don’t think…… whatever happened?
I know exactly how it feels i am 14 years old had a PUJ obstruction and got a ureter stent put in. It’s so painful to urinate and every time i receive pain i vomit at night or either the next day. getting it removed tomorrow and i dead set cannot wait
Oh this story is 100% Exactly hire I felt. I had a 5mm stone removed and they put a stent in for 5 days till swelling goes down. I get it removed tomorrow as it cant come soon enough. I can barely walk. Hate to pee and bowel movements impossible. Everything hurts. The need to urinate with the stent is excruciating.
My urologist’s response about the stent-related pain was “take Tylenol.” Heck, Vicodin barely stops the pain. It is in my urethral opening and the bottom wall of my vagina. It is very intense when I urinate. If that rotten stone wasn’t blocking my ureter completely, I’d pull out that double J so fast! It’s horrid. I don’t know why urologists think it’s nothing. I suspect that male urologists have no idea what females feel. But I’d like to know how a male urologist would feel with a stent in! Ouch. I hate it. I experienced plates and screws in my ankle and my gallbladder pulled out through my navel. The aftermaths of those things were nowhere NEAR as painful as the constant burning I feel as a result of this stent. I cannot WAIT to get it out and I hope to high heaven that once my stone is broken up, the stent can come out. I don’t want to run out of Vicodin… I don’t want to get addicted to the stuff. I only use it very occasionally for back pain on rough days. Even when I see the initials JJ, I cringe.
I am laughing at the descriptions of the previous postings but it hurts too much. All of which are so very true. I’m sitting on a pillow as the pain and discomfort consumes my thoughts. I am on my second stent and tried to go to work but couldn’t stay as it hurt even to walk. I hope this nightmare ends soon so I can get on with my life. There must be a better way or product that is softer and less painful because this is not good.
I agree with you 100% I’m glad mines coming out tomorrow. This ordeal is physically and mentally taxing.
Veka, you are so dead on. I am a 41 year old stent hater. I received my stent about 4 weeks ago and I haven’t been the same since. The pain is horrible;walking ,sitting , sleeping and trying to work 10 to 12 hours a day is not easy especially when it is also accompanied by a 30 week tumor that I am still waiting to have removed. After the 2 weeks of having the stent I had to go to the hospital because I developed an infection from the stent.I just want relief. If you can avoid getting a stent I advise you to at all cost.
If there is any way for you to avoid a stent please do so. It is one of the most excruciating painful things to endure. I was 55 when I had one put in i had kidney stones and Dr said for me to have stent put in. I wish I had asked him for an alternative I was suppose to have it in place for 6 weeks but begged him after 5 weeks to remove it. I couldn’t go to bathroom and pee without horrible burning pain. And b.m.were even worse I felt like my insides were going come out through my vag. I cried everytime I went to the bathroom. I couldn’t sleep I didn’t want to eat or drink anything for fear of using the restroom. I couldn’t lay down sit down walking was even worse I felt like that stent was stabbing my insides. And then I had incontinence issues when walking. I had no painkillers because as someone mentioned before it might Might only cause slight discomfort. Yeah right! The pain was so bad I contemplated suicide I begged my husband to end it for me because I couldn’t handle the pain. He called the Dr and asked if we could have it removed which after xrays he did. It was such a relief to be able to sit normally and lay down I still have occassional incontinence issues but I don’t know if that is due to my age or the stent. I never had problems before. I know it might be necessary for some to have one put in but if you can avoid it Please do.