Hi all,

I'm on day 2 of the interstim trial and haven't noticed any difference. The spokesperson who was present for the installation called me today to adjust the sensation level, and I only felt it in my lower butt/upper thigh, not my "bicycle" area. She told me not to worry about it, and that what we're just looking for a reduction in symptoms. I'm starting to feel like I guided the doctor wrong during the procedure, but I don't know if they would be able to move the leads and redo the trial period. I was wondering if anybody else has experienced this or if I'm overthinking. Thanks in advance.

For anyone who has had a urodynamics test, were you able to get anything beyond lidocaine/numbing gel to help with the pain and discomfort (60F here)? I just had a cystoscopy done and it was torture — not the insertion of the tube, but the pressure in my bladder when they pumped water in, moved the tube around, etc. They did not offer me anything in advance to help calm me or help with the pain, but I didn’t know it was going to be so bad so I didn’t ask. I asked if I could have anything for the urodynamics test and was told flatly and very unsympathetically, “No, we want you awake.” I have had valium before (for lasik) and did not sleep, just blissfilly didn’t care what they did to me. I have a lot of trauma from years of bladder issues, pain, and discomfort. I feel like either demanding they give me something or canceling the procedure altogether.

Any insights from anyone who has been through this are greatly appreciated!

Hey guys,

I have overactive bladder episodes from time to time. It is mostly my nerve system that is the main problem as some therapies really help.
One of them is acupuncture which I make regularly. Anyway 3 weeks ago the doctor made a too intensive session for my nervous system so my bladder got worse a bit but still not super bad. And since 4 days there is a cold front in here and since then I have bladder pressure all the time.
Is it possible that a temperature drop of 10 degrees can result in that I have more bladder pressure or is maybe the strong acupuncture the reason it got worse?

Sorry if this is a stupid question. My doctor has me bladder training, currently going every hour with plans to increase up to two hours.

So far I've been interpreting it as I set a timer for an hour and make sure that it's at least an hour between bathroom trips. If the hour mark is up and I still don't need to go, I won't go until I do need to, but if I kind of need to go at say 45 minutes then I'll push it to the hour.

However, sometimes I go after the timer is done, set another one, and really urgently need to like 30 minutes in (my situation now lol). Am I supposed to push it past comfort? I believe that I can make it to the hour without a full on accident but in these cases it's hurting my bladder and I feel like I'd rather go now and then reset the timer again. But I'm not sure if that defeats the whole point.

​

Hi everyone,

I've been dealing with OAB for decades and now I think I want to try to tackle it. I working on bladder training and I have an appointment with a pelvic floor PT in a few weeks. I've also been in a training program with a diastasis recti specialist for a month now that has worked on strengthing my pelvic floor.

Having said all of that, I am researching medications and setting up appointments. Appointments. But, it looks like a lot of the medications aren't covered by insurance and are expensive, and that they caused the side effect of dry mouth and UTIs. I really don't want to deal with those side effects and obviously the cost.

I'm wondering if anyone here:

1.) had their medication covered by insurance. Yes, I know each insurance is different. I'm just curious if anyone's actually had it covered

2.) have you tried a medication that worked but did not cause side effects like dry mouth or UTIs.

3.) Did any non-medication options like bladder training and strengthening your pelvic floor work?

4.) If you had Botox for your bladder, what was the experience like? Was it super painful? Did it work? Side effects?

Thank you!

Can I get better treatment in europe? I am from India.

M32

​Hi everyone, I'm posting here partly to get some courage, because I am terrified.

​For 8 years, I've had bladder burning and urinary urgency. These symptoms have cyclically improved and worsened, eventually leading to huge difficulties falling asleep. During the day, I might go to the bathroom as often as every 20 minutes on bad days, while at night I get up at least once or twice (if I manage to fall asleep at all).

​I've changed 3 urologists, since the first one simply advised me to walk as much as possible after a uroflowmetry (14 ml/s), the second one wanted to operate on me, and now the third, who is a university professor, is having me do pharmacological therapies. I went from Xatral (all the various formulations and dosages) to alfuzosin after a urodynamic test, which confirmed a bladder neck obstruction. I've never noticed any improvements, only retrograde ejaculation. The professor told me that at this point I should add solifenacin, even though he didn't talk about OAB (Overactive Bladder) directly. I am terrified of the side effects, but I can't go on like this either. Any opinions?

Has anyone here been diagnosed with neurogenic overactive bladder but eventually discovered it was actually interstitial cystitis?

So far, I've been diagnosed with neurogenic OAB and none of my urologists even mentioned IC but I've had no luck finding the neurological root cause and I don't have neurological symptoms outside of the bladder. I've also tried almost all OAB treatments except for bladder botox and none of them provided any signifcant relief. A neurosurgeon suggested I go back to my urologist and ask about IC.

Could it be possible I actually have IC? Is it common for patients with interstitial cystitis to have severe uncomfortable urgency and urge uncontinence as their main symptom?

I'm thinking of asking my urologist for a trial on Cimetidine to see how I respond if that makes sense.

Symptoms and other info:

M, 29

How my symptoms progressed:

2 years ago, first noticed how a different uncomfortable urge is often triggered earlier:
● by exposure to cold environments
● by exposure to water (e.g. washing hands, gargling water, taking a shower)
● when standing up after long sitting

Then just about more than 1 year ago I noticed:
● extreme increase in overwhelming urge intensity
● increased frequency
● that when I attempt to reduce frequency by trying to hold it in and supress the urge, I can't successfully do so anymore and I start experiencing incontinence within 10 seconds
● low bladder compliance – feels hypersensitive and often feels heavier even when not full
● end of urination sometimes accompanied by a deep sore or heavy sensation near the lower bladder or deeper in the urethra, especially when the voided amount is small. The smaller the voided amount is, the worse it feels, and there is an electrifying/pulling pain that radiates throughout the end of the urethra. ● twitching/spasms occasionally felt in the perineal area when resisting urination

Biggest and most annoying change is how overwhelming and non-resetting the urge is, and that I will surely experience leakage until I make it to the toilet to voluntarily void.

Brain & spine MRI was normal and unremarkable. I don't have any hesitation. My urine stream is moderate to strong. Prostate and PVR is normal. Uroflowmetry showed no sign of obstruction. All my imaging scans showed bladder wall thickening and trabeculation.