Qualitative analysis of treatment needs in interstitial cystitis/bladder pain syndrome: Implications for intervention

Figures & data

Figure 1. Study flow figure

Table 1. Demographic and clinical characteristics of participants

	Total (N = 27)
Variable	Mean (SD)/count (%)
Demographic
Age	45 (16.30)
Ethnicity
White	24 (88.89%)
Black	2 (7.47%)
Multiracial	1 (3.7%)
Marital status
Single (never married)	10 (37.04%)
Married or domestic partnership	10 (37.04%)
Divorced/widowed	7 (25.93%)
Receiving disability?
Yes	2 (7.47%)
No	25 (92.59%)
Household income
Under $10,000	1 (3.70%)
$10,000–19,999	3 (11.11%)
$20,000–$50,000	8 (25.93%)
$50,000–$100,000	11 (33.33%)
$100,000–$150,000	3 (11.11%)
$150,000 or higher	2 (3.70%)
Rather not say	3
Education
High school diploma or equivalent	3 (11.11%)
Vocational/technical school	3 (11.11%)
Some college	4 (14.81%)
Bachelor’s degree	10 (37.04%)
Master’s degree	5 (18.52%)
Doctorate or professional degree	2 (7.41%)
Employment
Employed full-time	13 (48.15%)
Employed part-time	1 (3.7%)
Unemployed	6 (22.22%)
Retired	4 (14.81%)
Unable to work	3 (11.11%)
Clinical
Age of diagnosis	37.70 (17.27)
Age of first symptoms	30.26 (17.15)
Interstitial cystitis total severity	22.63 (8.45)
Interstitial Cystitis Symptom Inventory	12.44 (4.80)
Interstitial Cystitis Problem Inventory	10.19 (3.98)
Michigan Body Map	10.52 (11.01)
BPI intensity	4.33 (2.39)
BPI interference	4.13 (2.81)
PROMIS anxiety	20.77 (8.29); t = 59.4
PHQ-9	8.46 (7.27)
PHQ-9–suicidality question (>0)	14.81% (4)

BPI = Brief Pain Inventory, Short Form; PROMIS = Patient-Reported Outcomes Measurement Information System; PHQ = Patient Health Questionnaire-9.

Table 2. Physical and emotional symptoms. Subthemes are sorted by number of mentions (decreasing) within each theme

Themes and subthemes	Mentions	Group mentions (out of 6)	Quotation number	Example quotation	Group
Physical
Pain/nausea/fatigue/sleep	102	6	2.01	I have a really high pain tolerance. I am miserable right now. I feel like I have acid just pouring out of me every time I go to the bathroom. It makes you feel uncomfortable, dirty.	6
			2.02	I’ve put people to the test over the last seven years. … My daughter can tell you, she’s like, “Mommy, why are you in the bed? Mommy, why? You’re always sleeping?” It’s hard to have her understand.	5
Frequency/urgency	45	6	2.03	I know where all the bathrooms are at. At nighttime it’s not so bad ’cause I can pull over, but during the day, can’t make too many plans. Too far away or go somewhere and get stuck. Like, oh, we don’t have a bathroom. … Now I have to go behind your building.	4
			2.04	For me, I was diagnosed at 15, and I was a freshman in high school. I literally woke up one day and started going to the bathroom six to eight times every hour. I had to quit playing sports. By the time my senior year hit, I only needed two credits to graduate, so I was able to work it out where I went to school for two hours and I went home.	5
			2.05	My mom was like, “You just went to the bathroom.” I was like, “I know, but I have to go again.” “No, you don’t.” “Yes, I do.” Every time I went to the bathroom it wasn’t a lot, but it was the fact that I went.	5
Emotional
Emotional effects on IC symptoms	49	6	2.06	Well, naturally I’m very anxious and if anything is stressing me out, if I’m having problems with my boyfriend, or I got fired from my job a few months ago because of this, that just has kept … the cycle of pain, stress, anxiety, pain, stress, anxiety. There’s not a break. Anything is stressful.	3
			2.07	I know stress is painful. Easy and simple as that. If I get stressed out at work or anything like that I can feel everything almost tighten up. And once I’m tense, there’s no going back from there. You can’t really backpedal out of it.	1
IC impact on emotional state	49	6	2.08	Anytime you have a lot of pain, that controls you. It does come on 0 to 60 in about two seconds. You can be in a wonderful mood, having a great time, the next thing you know, you’re sitting in a corner going, “Where’s the nearest bathroom?” You gotta find it now. It controls you. It controls your whole nervous system, I guess. You rejoice when it’s not there, you cry when it is. I don’t know how else to explain it. It’s very painful.	1
			2.09	The worry that I have all the time constant no matter what. … I think if you can somehow get everything working right, get your brain working right and not be on all these drugs that they keep putting you on, you maybe have a better quality of life.	6
			2.1	But I’m tired. I’m tired of this disease. I’m tired of thinking about it. I’m tired. But it takes multiple resources to get what you need and almost stabilize it to where it’s … you can tolerate it.	1
			2.11	I guess for me it’s always kind of like I have anxiety about it all the time. … I’ve had chronic bladder infections and UTI’s. I may have had this for three years but never was diagnosed until this year. They were always putting me on antibiotics. I’m just tired of that life. I don’t want to be on any antibiotics at all, ever. I think it’s ruining my body.	2
			2.12	I think it’s depressing. I find I get very blue, I get down. I get discouraged. I definitely get anxious about the bathroom thing. How long can I go in a movie until I have to interrupt the movie, everybody’s movie. I find my symptoms getting worse as I get older, and I think it’s for a variety of reasons. I just get down. I get down about myself, I get down	1
Always thinking of IC	12	5	2.13	My pain is so severe that I can’t concentrate. You just can’t. If I was in a meeting, that’s why I’m like, “Okay, I know I have to void at least once an hour.” … I’ll have a sensation of pain, and it will go from a one to about a nine in about 5 minutes or 10. A very short period of time it gets excruciating, and you’re just like, “Oh my goodness.” It’s just hard to concentrate on a conversation or a meeting where you’re making decisions and so forth.	1
			2.14	When those little moments, little victories or whatever, it’s like you get. … To me it’s like, “Oh, man. I’m gonna enjoy this until it comes back.” ’Cause you know it’s coming. It’s like a bill collector.	3
			2.15	I mean, I think more about just pretending you’re fine is I don’t want to be the girl at work that people are noticing, like you’re always leaving meetings to go to the bathroom. So things like that I feel like I’m thinking a step ahead. Or you’re in a meeting and you’re in so much pain, and I feel like I’m looking at the person talking and it’s something that always comes up to me is, “You have no idea how much pain I’m in right now, but yes, I’m gonna pretend I’m listening to you, what you’re saying.”	1

IC = interstitial cystitis; UTI = urinary tract infection.

Table 3. Impact on daily life and socio-contextual factors. Subthemes are sorted by number of mentions (decreasing) within each theme

Theme and subtheme	Mentions	Group mentions (out of 6)	Number	Example quotation	Group
Relationships/other interactions
Romantic	38	6	3.01	See, what happened was I had sex with my boyfriend last year, okay? I got a UTI. Then I got a horrible flare. … That made me afraid of having sex because it’s like, “Jeez, I got that UTI and that was miserable.”	6
			3.02	Yeah, I had to quit dating, because I don’t want to try to explain that sex is painful and I don’t want to even go there. … I’m even having trouble with my own family, so how can someone you’re just dating.	3
			3.03	It ruined my marriage. It ended up in a divorce.	3
			3.04	It’s just a cycle and he’s great and he’s really supportive, but then I feel guilt that I can’t do the things. I can’t have sex with him [but] I want to have sex with him.	6
			3.05	Yeah, intercourse is far and in between. There’s one person right now that I’ve had in the last couple weeks, and I haven’t had any pain. I haven’t had any “don’t touch me” moments. I don’t know. I guess you can say this may be the one for me. I don’t know. I push people away, because for me to explain my disease in depth, it scares them.	5
			3.06	I’m in a relationship for two years. That can … I don’t know why I’m getting emotional right now. That’s just really hard because you want to be intimate with the person that you love and you can’t because you have that fear of having that terrible pain. It’s awful.	2
			3.07	Definitely the relationship aspect. I don’t even want to date anymore because that is one of my worst fears. I’ve had experiences in previous relationships. Some people were not very … They just don’t understand. How do you explain that? I can totally relate to that part of it, too. I don’t know what’s going to happen.	2
Reactions	30	6	3.08	The type of mentality that me and my mom have is like, “We need an answer.” Finally, they diagnosed me. You have this. This is very rare. It’s overwhelming. You’re going into a doctor’s office at the age of 15 every week with a bunch of old men. They’re looking at you like, “Why is she here? What is she doing here?”	5
			3.09	I did not expect to start crying. But speaking of the relationship part, you’re talking about your mom and wanting to thank her. I realized I don’t have that at all. I don’t feel like my family has gotten to a point where really anyone believes me yet. I’m really pretending around them, and they don’t understand any of the diet stuff at all. It’s very hard to go home and say, “I can’t have that.” And they’re like, “Well do we really have to get a different dinner just for you? Are you serious? You’re making it up.”	1
Family	27	5	3.1	Like I said, when I was diagnosed, I was still at home. I wasn’t married or anything like that. My dad, literally, he just thought I was crazy. It was, “You’re having a psychotic disorder.” I think the only saving grace that I had was that I still lived at home, and so he’d take me to my appointments. Like I said, my doctor just looked at them and said, “This is real.”	1
How explains condition to others	20	5	3.11	I was gonna use the same word. Exhausting, but almost because for me it’s something that is always, always on the back of my mind, and I’ve had experiences where you tell people, and then how much do you say, and it gets weird. I think I actually spend tons of energy pretending I’m totally fine and not telling anyone at all, and that’s just exhausting on a day-to-day basis.	1
Friendships	4	2	3.12	One of my bestest friends who I felt like I could talk to, like out of nowhere she’s like, “I just don’t think I can be your friend anymore and whenever I see you, you don’t seem happy to see me.” and I’m like “You’re the first person I was able to just be real with.	4
			3.13	I would say for me it’s been a huge struggle because if I start not feeling good or I’m not doing well I kinda isolate or, you know, and friends don’t understand why you kinda draw back or why you don’t always want to do certain things.	4
Coworkers	4	2	3.14	… They don’t treat me bad ’cause I’m a jerk at work, you know what I mean? Like, I’m a jerk and I let ’em know straight up, like, it’s not even your business but I’m telling you, and they know, they do things to help me out.	4
Adjustment to life with IC	11	4	3.15	Everything’s inconvenient. I just go to work and go home. That’s pretty much it. I make plans every once in a while but it’s hard to make plans, ’cause everything’s a big deal.	4
Quality of life
Diet	47	6	3.16	I think it’s hard ’cause it’s not black and white. It’s some things work for others. It’s a lot of trial and error. And then it’s almost kind of like when you introduce food to a kid for the first time, you gotta do it one at a time so that [if you] do have a reaction you know what it is. It’s like you can cut this and you can cut that, but if you do too much at once, you don’t know what’s necessarily causing it to make it worse or better.	1
Financial	33	6	3.17	I’ve tried lots of different things. At one time I tried pelvic floor physical therapy. We tried to improve that, which wasn’t very successful, unfortunately. … All the cost associated with physical therapy, which is expensive, wasn’t worth the cost, unfortunately. That’s just my personal experience. It didn’t offer enough relief to justify the cost. …	2
Effect on work	25	6	3.18	It’s just really difficult. Not being able to go to work sometimes, that’s embarrassing. Not embarrassing, but it’s not like I can call my boss and be like, “Hey, I’m having a pelvic floor episode.” I don’t know, it’s just hard.	2
			3.19	I did the work thing for years. Worked the same job for the last 20 years. Loved it. Traveled. Had everything in the world that I could ever ask for in a job. But the last year that I was there, which is only three or four years now, I was in the hospital for a week five different times. What employer’s gonna keep you like that? It just didn’t work.	1
			3.2	The anxiety part. I used to not really … I’m not officially diagnosed with anxiety. I know that when you’re in a situation where you are, like at work, it’s embarrassing. Sometimes, I’m like blah. Share with everyone what’s going on. Depends who you are and how well I know you. There are just some days where I’m just like, I don’t know how I’m going to get to work and I start freaking out in my mind. Do I have to call my boss and tell them I can’t come in?	2
Travel	22	5	3.21	I just drove a car back from Nebraska, by the way, with my son. I drove it to Nebraska. He was most tolerant of me, because he knew that I was gonna have to stop at every exit. It was miserable.	1
			3.22	For me, like when I have a flare-up when it gets really bad, it’s like debilitating. … By the time I was done going to bathroom, getting back in the car, and he’d find a freeway entrance, I was like, “I have to go to the bathroom again.” I remember him handing me a cup and saying, “This is all in your head. I’ve got to get home.”	1
Planning activities/commitments	18	4	3.23	The inconvenience, I go to Disney World two summers ago, and after each ride I have to find a toilet, and my husband and sons. … We find a toilet, they get in line at the ride, and then I see where they’re in line. I go to the bathroom. And then I go catch up with them. It’s just inconvenient. You always have to know where a bathroom is.	1
Social isolation	14	4	3.24	I find it really lonely. I have to cook all my own meals. I can’t really do social things that my friends are going out to do. I can’t drink. I have to plan everything around where there’s a bathroom, where there’s food that I can eat, when can I go to bed, when can I take my meds. All of that becomes super isolating. …	1
			3.25	I push people away.	5
Provider capabilities
Feels dismissed/not taken seriously	35	5	3.26	The neurologist that I first saw dismissed me. He didn’t believe in IC and straight up, “This is not real.” They put me in the hospital. I was in the hospital for about a week, because I couldn’t do anything. I was hurting so bad, but they never found anything that was causing it.	3
Misdiagnosis/alternative explanations	27	6	3.27	I was misdiagnosed like more times than I can possibly count. I was put on meds that made me so sick. They thought for a while that I had kidney problems, which I do, but they’re not necessarily related, or if they are, no one’s figured it out yet. I only recently was finally diagnosed, so it’s been like seven or eight years. … She diagnosed me just by looking through all of my other medical records, and said, “Well this is definitely what you have.” The medical world failed me for a long time, and it took a lot of fighting. Like, a lot of fighting. And telling people over and over and over, “No, you don’t understand. I’m in pain.”	1
Provider level of knowledge
Sufficient	23	6	3.28	They gave me three shots of morphine in the hospital. Three and I was finally out. That’s how bad it was. The doctor actually came in, I was so lucky … He walked in the room and he told the nurses, he goes, “Give her morphine. My dad has IC.” He knew.	6
			3.29	Another thing, too, is, I was seeing two men. When I went to go see my gynecologist, which is a man, he said, “Why don’t you go see this female one? She’s been doing IC for 20 years. She’s very progressive, aggressive about her situations. Why don’t you go see her?”	5
Lacking	20	5	3.3	Try going to the emergency room with this. You gonna see a circus. It’s like a three-ring circus. “Why are you hurting?”, “Yes, I have kidney stones. I know I have kidney stones. I have bilateral, and there’s too many in there to count. I read the x-ray report just like you do. No, that’s not what’s hurting me.” “Yes, ma’am, I think it is.” “No, I’m telling you. I know the difference. It’s not.” All right, it’s a three-ring circus. Why can’t we go in and say, “I’m diagnosed with this. I need an emergency treatment.” They look at us like we’re crazy, or that you got horns growing, or you’re a druggie. And then you’ll have, on a chance, you’ll have a doctor that’ll say, “Yes, ma’am. You need an IV treatment. You just need fluids in there to get your body back in shape, ’cause you’ve dehydrated yourself. Let’s do that and let you rest for a little while.”	1
Delayed diagnosis	20	6	3.31	They didn’t diagnose mine for like 14 years.	4
			3.32	I don’t even have a set treatment yet. There is no treatment, but at this point, it’s like I feel like medicines are being thrown for symptoms that don’t seem to match up with what I’m saying. It’s just frustrating.	6
Feels she must advocate for herself	18	6	3.33	I love my doctors, but I’ve sworn off going to doctors anymore. I just absolutely had to because it’s hopeless. I’m sorry. It’s hopeless.	1
			3.34	I think I got really lucky and I got good doctors. I, at least, recently in the last, you know, maybe ten years, but you know, I am a big advocate. Everybody’s sick in my family, we have lots of doctors in my family and I’m not going to take no. And I’ll just go on and do my own research and talk to the doctors and try to find answers, but that’s because that’s not acceptable, whatever you’re telling me because that’s not true. But, like I was saying that many, many, many doctors are not educated. They’re just not. And I was really, really lucky when I first started I found a physician that only did women and only did IC. That’s it. So, I got really lucky. Right away.	4
Lack of communication between providers	5	3	3.35	Okay, everybody’s so specialized that they won’t talk to anybody else about it. Okay, when they gave me the Myrbetriq, my blood pressure went up. Well, I said, “Maybe I should take something for this, because I’m feeling real light headed and dizzy a lot.” The urologist said, “That’s not my job. I can’t tell you about your blood pressure.” I said, “Well, you’re the one that gave me the Myrbetriq that says, ‘Call your doctor or consult with your doctor if your blood pressure goes up,’ and mine’s gone up 30 points and I think we need to talk.” He said, “Talk?”	3

IC = interstitial cystitis; UTI = urinary tract infection; IV = intravenous.

Table 4. Response to illness. Subthemes are sorted by number of mentions (decreasing) within each theme

Themes and subthemes	Mentions	Groups mentions (out of 6)	Number	Example quotation	Group
Social support/nonclinical coping strategies
Self-care/other coping strategies	47	6	4.01	She’s very much all about the positive thinking, and I think that’s helped me a lot. A lot. I ask all my friends to try and be positive about it. Don’t ask me, “Oh, do you not feel well today?” No. I hate that. I hate being pitied. I hate being belittled about it. If I’m not laying in bed, let me try and be normal. Let me just try and do whatever it is that you’re doing, and if I can’t I’ll tell you.	1
			4.02	I’ve also started to appreciate more things around me because of it. That I am much more grateful with things I have, because of what I have been through or are going through. Just very grateful that I have kids or I have a house.	1
			4.03	I don’t think I cope very well with what I have going on. I can have pity parties. I’m not coping well with it. I think I just get really frustrated. Especially when I was diagnosed really young with an autoimmune disease, I just thought the only thing I can control is not taking medicine, which sounds really silly because I should be taking medicine. … I just don’t think I can.	2
			4.04	As far as coping skills, if I’m not having a good day, whether it’s the IC flare up and or really, really bad cramps. For period stuff, just a hint of cramping, I immediately take Aleve. A couple times I did this I didn’t mean to, but I took too much Aleve. I didn’t remember what the dosage was and I took two and then two later in the day or the evening. My mom was like, “What? You took how much? You’re not supposed to do that.” Then, also, last several months, even just one Aleve, if I’m taking it as the dosage is supposed to be, it doesn’t help the cramping. The cramping and the IC, it’s like both are happening at the same time. That’s really frustrating for me. I just want the pain to go away. I want to be able to function and not be doubled over in pain or wanting to lay in bed.	2
Family/friends/significant other	46	6	4.05	Overall, I’m lucky to have supportive people around me. I think I have pretty good coping skills just because I had a lot of childhood trauma growing up. I’ve learned how to overcome a lot of that. I’d say I’m pretty resilient in general. … The IC has been in control, but I’m afraid that if it doesn’t get better control that it will start to flare up.	2
			4.06	I take a lot of pain medication. I take medicine, Benadryl, I take something that’s a little bit stronger than that and try to survive on it, but that’s to go to sleep every night. If not, I’m … If I don’t get any sleep I’m just useless. You put somebody that’s sleep deprived on pain medication, and it’s like zonk, you’re out. You land in a corner somewhere. My children are grown. I don’t have the worry or concerns about the kids, but I do my grandchildren. They’re a big deal to me. I hate that for the longest my grandson would come in the house and say, “Aw, Nannie. We’re not gonna do anything again today?” And it would break my heart. It’d totally break my heart.	1
			4.07	My children are my survival line, if I need anything they are there. But I’ve been battling this since they were kids, so they understand that mom’s not good every day. That she has to run to the bathroom every 15 minutes on some occasions, and do not ask me to get in a car without a fight. I do not like to go anywhere. I just don’t like to travel anymore.	1
Support groups/online groups	16	5	4.08	I almost feel like structured group settings would be more beneficial. Then you have the piece of people that understand you but aren’t necessarily trained at moving the conversation. Someone that can reign you in and keep you from going down the rabbit hole. Like this, but not for a research study, more for a, I don’t know, once a week like a poker club or something.	6
No social support	8	4	4.09	I guess having the pain. I can handle the pain without let anybody know I’m in pain. … I don’t say anything. It would be good to have someone I could talk to about my problems.	2
Sought mental health support
Yes, has sought mental health support	27	5	4.1	I have seen a couple therapists over the years. Just recently I have started going back to a guy that’s really, I really clicked with him, and it’s not been long enough for me to. … I’m still working through a lot of stuff, talking with him, as I’ve only seen him a couple times in the last couple of weeks, but I do feel better after I talk about it with someone who can interpret my what I call gibberish. I feel like I can’t speak about what I’m feeling, I can’t put it into words, but he’s able to tell me what he hears me say, so I can understand it better, and I feel that helps me try to deal with this life and in turn that kinda helps me, gives me a little more confidence that I can continue to find things that help me.	3
			4.11	Well, I mean mine all came about through like a—I was seeing somebody and I think it was the—of course it takes a lot of times to find the right person who’s the right fit and as soon as I did, I mean, they’ve been very great about, but once again, I can’t pay a hundred and fifty to go see my therapist, you know? So that’s kinda the hard part.	4
Level of effectiveness of mental health support	16	5	4.12	But it was great to have finally a doctor who—a psychologist who actually understood it and so a lot of things were geared toward figuring out ways to cope with things, that did make a big difference.	4
			4.13	It’s been really helpful, yeah. But it’s not even something I thought to do until I came to the Osher Center, and one of the MDs said, “We have this person, so would you be interested?” I didn’t even think that that would be something I might need to do until I tried it.	1
Number of visits necessary	12	4	4.14	I mean, I think the ideal scenario is when you’re first diagnosed, a year. To really help ’cause during that year they’re going to try different medications, they’re going to try bladder installations, I mean, they’re going to try a bunch of different stuff and not everything works for everybody and somethings irritate people more than, you know, others, so having that constant support until you really do have a better idea of it would be. … I’ve never had that opportunity to really have that constant support or talking through it or having somebody who really understands.	4
			4.15	I guess if I felt like it was a high stress period, like more stuff going on and I felt like I was having more of a flare up period, I would probably want to see that person more frequently. Maybe once a week, if needed, twice a week. I would imagine, for me at this point, if I were to see someone once every two or three weeks, maybe.	2
			4.16	Or yeah, I guess, lifelong.	4
No, has not sought mental health support	3	3	4.17	… It’s almost like a team effort, things are better. I personally hadn’t tried the therapy, but I come from a mental health background, so I think part of that is just it’s hard to go see a therapist when that’s your background. It’s just been hard for me. And then but I think it … What’s the saying? It takes a village.	1

IC = interstitial cystitis.

Table 5. Perceived needs in treatment. Subthemes are sorted by number of mentions (decreasing)

Themes and subthemes	Mentions	Group mentions (out of 6)	Number	Example quotation	Group
Perceived needs in treatment
What do doctors need to know	44	4	5.01	Well, let’s just first start with informing our lay people out there and your regular doctor doctor, your primary care doctor, your regular urologist. They don’t believe it exists. It’s kinda like, you know, women didn’t have cramps or … it’s asinine that urology doctors aren’t informed. It’s asinine. They need to be educated. They need to get the word out.	4
Important factors for treatment	37	6	5.02	I think it’d be helpful to have a support group, just to be able to have other people’s experiences and what they’ve tried, what hasn’t worked, what does work, but also a counselor.	2
Support groups	27	4	5.03	It kills me because there’s no … and I’ve thought about doing this, too. This is great that I’m glad we’re here is that my psychologist that I’ve worked with … emotional-wise has been great to talk to, but they don’t have it so they can’t really understand it. I think when you work with somebody that actually has it and you can talk to somebody, the three of us could sit in here and probably … We could probably not stop talking for 24 hours straight because of all the stuff we have in common.	6
Adequate treatment	21	4	5.04	Even if there was a little book or I don’t know. I feel like you can go to the internet and there are so many different websites and everyone tells you something different. …	4
			5.05	I would say lots of tests. For me, the only reason why I knew I had go 62 times a day is because I had to do a tally mark.	5
			5.06	In general, I haven’t really gotten into it too much, or been concerned with it, just ’cause there’s a lot of other stuff that I’m still juggling. … Also, whenever I do read about it or educate myself, I kind of just freak out a little bit. It’s just so overwhelming and just so negative for me that it’s just easy to like, “Okay, I’m just gonna keep doing what I’m doing.” And just be open to more things like this [group], because I really do feel like this is helpful and in the right direction.	1
Needs better personal understanding of IC	15	3	5.07	That’s another thing. They say that when you have multiple children your bladder gets weaker. Your bladder does this. Your bladder does that. Again, what is my IC doing to me? That’s what I can never find out.	5
			5.08	I thought something was horribly wrong and it was nothing in my urine. It was like I was still in those stages like you like, “What is wrong with me?” Oh, you have a bacterial infection and you have IC. It was not having all the tools to know what’s wrong with you all the time can make somebody so crazy and make you feel like you’re out of whack all the time.	6
Symptom management	13	5	5.09	Talking to counselors is probably the number one thing for me right now that’s missing. You know, for me, stress being such a flare for me that having somebody to talk to professionally I think would really help.	4
Day-to-day IC management needs	11	4	5.10	I think a pain medication that’s not addicting. I don’t want to take pain medication because it’s so addicting, but I just want to be out of pain. I just wish there was something that you could do, that you could take that would work and not be addicting.	2
			5.11	Well, I think if they would define it. If they would say, “This is what it is and this is what you can do.” The dye, instead of just throwing the medication, if they say … I have not been told anything that I can do personally to relieve it. And that really bothers me.	3

IC = interstitial cystitis.

Figure 2. Biopsychosocial model of IC/BPS