Table 2.

Participant Experiences with Stent-Associated Symptoms

Topic	Participant quote
Section 1: SAS experienced
Pain
Burning or stinging	[I had an] incredible burning sensation when I peed, to the point that on a 1–10 scale, I was in my mind at a seven and a half … It would make me cry out. I would involuntarily make a noise when I peed.—Male, age 54
Cramping or spasms	As I got closer to emptying my bladder or towards the middle of peeing and you still feel like you have a little bit more, the kidney would start to cramp. I could almost feel when it finally pushed everything out because it would be totally cramped up. That would actually last a few minutes after I was all done using the restroom and I had left the restroom. … it would gradually uncramp and go back 15–20 minutes later, sometimes.—Male, age 29
Discomfort	Just the UTI feeling. Just the discomfort. [On the day of removal] I was, at that point, just extremely depressed, and I was thinking, “I can't continue this.” It was just this continued discomfort. Rather than – it's not pain.—Female, age 67
Pressure	It would be like emptying a glass of water through a straw and it couldn't keep up with it. You know what I'm saying? It was more of a pull more than it was a pain. Just an uncomfortable pressure, I guess, if you want to call it. That was really the biggest symptom that I had that I wasn't having before the stent was in.—Male, age 60
Dull, achy, or sore	I had planned to not care for my grandchildren that week before I had the stent removed. But, I missed them and I did, and it hurt much worse after I was physically exerting caretaking them – they're 1 and 3 – picking them up, doing whatever … I guess it was four days after the stent was put in, and I crawled home, got in bed, and stayed there until I went back to get the stent out because it ached, really ached, after my physical exertion … I came home. I got in bed and said, “I'm done. I can't do anything else.”—Female, age 62
Stabbing or sharp	The sharp pain is what's least fun. The constant pain you can slightly manage, and at least kind of mitigate to a point where you can accept it. But, the sharp pains that happen, you can't stop them and you don't know how high the pain is going to go because it's a sharp, sudden pain. You just know it's going to suck. You just don't know how bad.—Male, age 39
Sense of stent presence	It wasn't like it was a sharp pain or a knife sticking you or something. It was just you could tell there was something … It was just one of these inside pains that you really couldn't pinpoint exactly, but you knew that it was kind of irritating.—Female, age 62
Blood in urine	I feel like everyone always says, “Hey, you're going to have some blood in your urine.” But, there are the questions you do daily with this research thing. I feel like it kept asking me is there some blood in your urine, a lot of blood, a ton, blood clots, like what's going on? And, I was like, oh, does everyone not have gigantic blood clots and disgusting urine? I will say the last day before I got it out, my urine looked like it was passable for normal urine and I was shocked when that happened. So, it does gradually get better over the time that it's in. But, it's a lot at the front.—Female, age 33
Urinary frequency	[Frequent urination] lasted the whole time, but I would say probably the first half of the week or the first four days of the week [after stent placement] it was like every hour or more frequently than every hour. Then, the last two days, I could do every hour and-a-half, but it was still like the forefront of my brain was trying to work that out.—Female, age 18 They told me to drink a lot of water, so I had to go to the bathroom a lot. … It almost prevented me from drinking water because I'm like, hey, every time I go to the bathroom, it's very severe pain. I'm supposed to drink a lot of water, but I know what's going to happen to me.—Male, age 40
Urinary urgency	It is horrible. I will put it to you like that. If you get that first urge that you've got to go to the bathroom, you better be near a bathroom because you'll wet yourself. It's very embarrassing.—Female, age 62 But there were times where I'd pee every six minutes. You know? I'd be literally getting out of there after sitting in there for 10 minutes, come out, and then suddenly just have an urgency to run right back in. And, maybe I'd pee a teaspoon or a tablespoon, but the urgency was just like, “If you don't go now, you're peeing your pants.”—Male, age 54
Urinary incontinence	I actually wet my pants two or three times throughout that week. Now, what would be – I especially being a nurse, I hold it a lot of times too long, and then I'll get called, but this was, I absolutely had no control over it.—Female, age 51
Nausea	I was the sickest I've been in a long time. … I didn't even want to eat the first two days, I was so nauseous.—Female, age 38
Fatigue	It just was a nuisance because I couldn't do much. I couldn't get back to my activity, what I was used to doing … just playing with the dog, getting back to work, being able to walk around. … I couldn't really just go and go and go. I had trouble getting myself going. … It drained my energy.—Female, age 51
General malaise	The whole thing just made me feel really gross. [The stent and the medicine] both independently and together made me feel terrible.—Female, age 42
Section 2: Most bothersome SAS
Pain	It was just very intense. Not a feeling I'm familiar with, and it lasted as long as I was going to the bathroom for. I think a little bit was anticipation. Every time I went to the bathroom, it was like, “Oh, is it going to hurt this time? Is it not going to hurt?” I think there was a little bit of that going on, too.—Male, age 33 The cramps, the spasms. Because, that would just bring on a wave of literally nauseating – physically nauseating, overwhelming pain. … It almost felt like if I could visualize it, a rush of something going up through my kidney and back out. It was just so crazy. And then, it was almost like the worst charley horse you could ever imagine.—Female, age 38
Urinary frequency	The most annoying thing about the stent was urinary frequency. I mean, I'd go a dozen times a day, maybe more. Probably 15. … The frequency interrupting sleep, and having to go at work all the time, knowing that I'm going to have to drive for 45 minutes, stopping to think where can I go to the bathroom if I have to stop right away. … It was the frequency that was the worst.—Female, age 52 I would say probably the most bothersome would've been having to go to the bathroom a lot. A lot more than normal. … It wasn't like I could control that. I think it was probably because it controlled me.—Female, age 62
Section 3: Reason for SAS bother
Pain sensations	When a stent is there, it's the most painful when you're going to the bathroom. Basically, as long as you have that stent in, going to the bathroom is something to be feared rather than just a normal thing that happens. That sucks having that fear, looking at everything that you're drinking and thinking, “Should I keep drinking this much because you know this is going to make it so it hurts?” and weighing every liquid decision is not fun.—Male, age 39
Psychological factors	The blood in the urine was just weird. Very weird. … It was always in the toilet … and looked strange. That did give me discomfort. Probably the worry because it kept going on almost a week later. So, that just made me concerned, “Oh, is there something wrong?” … There was just really, more anxiety over “Is this normal?” once it kept going for a while.—Female, age 38 So for me, I think it's because of how active I am … [now] being sedentary and not being able to move around a lot … because of my mentality … because I do like to move and get out, and be social, or go dancing. So, for me that was probably kind of the hardest part… it was emotionally and mentally draining…Physical pain I can kind of tolerate or mentally overcome, but the mental pain annoys me the most.—Male, age 29
Interference with usual activities	Definitely, definitely the frequent urination. That was so frustrating for me. I like to have control of my life, and that whole week was very like; you are not in control at all. … My entire week was dictated by the stent. It was 100 percent impactful and in the way of everything.—Female, age 18
Section 4: Engagement in sex
Impact	I abstained during that time because I didn't want to figure out – didn't want to find out what it would cause. I was afraid of … Well, you know, I knew how painful it was to urinate. I didn't want to experience what it would be like to have sex.—Male, age 53 I was not in the mood. … It did reduce my sex life, just because I didn't feel like it with the stent in there.—Male, age 54

SAS = stent-associated symptom; UTI = urinary tract infection.