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[Preprint]. 2023 Apr 17:2023.04.14.23288590. [Version 1] doi: 10.1101/2023.04.14.23288590

Table 2: Thematic Analysis of Presenting Features of Patients with MFS.

Descriptions of unique symptomatic features were extracted from the history of present illness (HPI) at each patient’s initial consultation.

Global Theme Category Subcategory Code Raw data (examples)
Urinary frequency Persistent need to void Constant frequency Persistent feeling of needing to void “She can never be comfortable for any period of time, even right after voiding”
Fullness out of proportion with volume “She states that there is never very much there, but it feels like I’m going to burst, so I have to go.”
Intrusive urge “She notes the need to go is powerful, and very hard to ignore.”
Prone frequency without nocturia Nighttime Frequency “She has to go to the bathroom 5-6 times before she can finally get to sleep”
Association with lying down “Very little comes out each time, but 5 minutes after she gets back in bed, she feels like she has to go again to get empty.”
No Nocturia “Once she gets to sleep, she stays asleep for ~6 hours, but has to go multiple times when she first lies down.”
Activities exacerbate symptoms Excessive physical activity Exercise brings on urge “She cannot exercise without feeling like she has to urinate every 20 minutes”
Physical activity worsens symptoms “The day after a lot of walking, like a trip to Disneyland, will be much worse”
Immobility for long periods of time Worsened by immobility “Travelling in the car for long trips is terrifying because it will make these symptoms so much worse.”
Symptoms persist after immobility “Always gets the feeling of needing to go constantly right after a long plane flight, almost like the beginning of a UTI but it never progresses.”
Extended Periods of Sitting Sitting worse than other positions “She has to lie down in the back seat on long car trips, or she will have to urinate every 10 minutes.”
Sitting increases urge “She notes that she dreads long meetings, cause the urgency is so much worse sitting in one place for that long and she feels like she can’t go or her coworkers will think something is wrong with her.
Sensation of Bladder Fullness Sensation of incomplete emptying Constant sensation of fullness Persistant urge “it always feels like there is something there, even right after going”
Rapid return of fullness “Within 15 minutes of going, she feels like her bladder is completely full again.”
Perception of fullness “She states she knows there’s nothing there, but feels like she is still full.”
Poor Toileting Behaviors Straining to Void “She sits on the toilet for at least a few minutes after trying to push any remaining urine out, even though little comes, just to make sure she is empty”
Double Voiding “She will typically get up and then go right back to the toilet and only a little bit more will come out.”
Persistant Voiding “She complains that she is losing a lot of time to just sitting on the toilet in an attempt to finally feel empty”
Bladder discomfort and Pressure Pressure Building pressure “It is not a sudden-onset urgency, more of a building pressure that is hard to ignore.”
Pressure throughout pelvis “there is a pressure that begins midline over the bladder and then spreads across the low pelvis if she tries to hold it.”
Heaviness “there is a heaviness in the pelvis that is always there, it just gets worse the longer she tried to wait before urinating.”
Discomfort Discomfort builds “If she does not go when the desire comes, she will not be incontinent, but will be more and more uncomfortable until she just has to go”
Pain with deferring urination “If she had to hold it past the early sensation of needing to go, it would just get painful to hold it, so she never does.”
Uncomfortable urge “it is not painful, but just a very uncomfortable pressure that interferes with her ability to do anything else.”
Uncomfortable Urge, not Urgency Minimal Impact of Fluids Little dependence on fluid No impact of fluid limitation “if she drinks more, she goes more, but even when she limits fluids heavily, the feeling of constantly needing to void never goes away.”
Low volume urge “She states as soon as she takes a sip of any fluids, the urine hits her bladder and she has to go again”
Frequency independent of intake “It doesn’t matter how little she drinks, the feeling [of bladder fullness] never goes away.”
Improved voiding with more volume better voiding efficiency with more fluids “she notes that if she drinks more, sometimes it will help her feel like she can empty better and be more comfortable”
no impairment in capacity “She notes that the only time she feels she can really get empty is first thing in the morning when her bladder is really full.”
Insensate
Incontinence
Activity-associated
leakage
Worse leak with intense activity “While exercising, never feels any leakage, but notices that she can be very wet afterwards”
Minor activities bring on leakage “Never feels a gush, but notes her liner is pretty wet when she gets home after a long walk.”
No awareness of leaks Feeling of wetness, not leak “she never notices anything coming out, but when she gets undressed at the end of the day, she notices her underwear is wet.”
Constant incontinence “No particular events or activities bring it on, she just notices a little wetness in her underwear when she goes to the bathroom.”
Not stress incontinence No leakage with stress maneuvers “denies any leakage with cough, laugh or sneeze, but feels a little bit wet all throughout the day”
No association with fullness “She denies any period when she can be predictably dry for any length of time”
Very low volume Bothered by smell “never soaks through the inner cotton layer of her underwear, but definitely smells like urine, so she keeps a change of underwear in her purse.”
Low volume “she just feels a little bit wet, all throughout the day, but never enough to wear a pad.”
No Urgency Incontinence No Urgency or Urgency Incontinence No sudden-onset urgency “She never leaks or has to run suddenly to the bathroom, but constantly needs to go.”
No incontinence with urge “She states if she had to hold it and couldn’t get to a bathroom, she could make it.”
Volitional voiding to avoid discomfort “She could wait to void, but doesn’t want to.”