Anyone else with only urinary frequency and urgency without pain?

[thezach]

Hi I'm in my early 20s and have been dealing with this for slightly over 2 years now. A brief history:

1. It with a couple of weeks of really bad stomachaches, where I had multiple bowel movements a day and sometimes don't feel like I'm done, like poop is still stuck there. Therefore I tried to strain extremely hard to get it all out.
2. Then one night I suddenly had the feeling of urine at the tip of my penis and this time I strained really hard to force merely drops of urine out, but the feeling never went away. On the car journey it was so bad and I felt that I'm gonna piss myself anytime although I knew that there was no urine. I thought it would just go away but it never did.
3. In the initial months I had bladder soreness too, similar to a sore muscle after a hard workout that makes me feel like I needed to urinate urgently. This went away after a couple of months. I also have the occasional feeling of my urethra being hot after I urinate, just slightly and it's not painful nor would I say it's burning. But it's definitely not normal since it's not always there so I have something to compare with. The hot feeling went away too.
4. Right now: Sometimes right after I pee, I have a weird feeling in my urethra and perineum, such that when I press my perineum, it sort of feels like there's a drop of urine still there, but it's just a sensation. I still have the near constant urge to urinate. It only goes away for 5min after I pee, sometimes it doesn't even go away and it feels like I could still force some urine out.

Done all the urological tests other than a cystoscopy and they were all normal, including a urodynamics where they pumped your bladder with fluids. Currently seeing a PT for a couple of months and I am doing daily stretching for over a month but no results. My stomach issue has been better after the initial weeks but over the 2 years it has come back on and off. The past 6 months my stomach was acting up pretty bad so I'm not sure if my stomach issue is related. Recently went to a GI to do a stool test and still waiting for results.

To reiterate, I never had any actual pain, the closest is just bladder soreness which has gone away on its own. Anyone this or has any idea what can help? Thanks!!!

[webslave]

My internet differential diagnosis:

1. Possible IBS-C
2. Dysuria points to IC/BPS
3. Ditto
4. Ditto

I would do a flexible cystoscopy and go from there, but for now it's looking like a subtype of IC/BPS, probably either pelvic muscle hypertonicity (usually linked to an anxious disposition), or the multiple overlapping pain conditions subtype.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8700457/

[thezach]

Thanks for the reply. I don't have constipation and generally have bowel movements at least once a day. I never had any pain too, the closest is just the bladder soreness and somewhat hot feelin in the urethra, both of which has gone away on their own.

What is the cystoscopy trying to find? I did a urodynamics study so would rather not have anything up my urethra anymore unless it can really help, and none of the urologists I've seen really recommend it. Plus cystoscopy is not really a treatment in itself, more of a diagnostic tool.

From your experience does this get better? I have plateaued for a really long time and everyone just says I'm relatively young, just keep waiting blah blah. What do you recommend to help? I have been seeing a PT for months and recently added more stretches on my own too but nothing really seems to help the urinary urge. So I'm not sure if PT in general helps for my condition or if I need a better PT. This is my second PT too and I don't have a lot of pelvic PT to choose from.

[webslave]

A cystoscopy can rule out lesions in the bladder, it can see if there is stenosis in the urethra, look at the bladder neck, and look for inflammation everywhere. It's a useful first step, but can lead to some discomfort for a few days. I would do it in your shoes.

Your bowel episode, if not a form of IBS (perhaps IBS-D then, most likely), could have been an infection, and the straining may have affected a deep pelvic muscle, and that can inflame the bladder (in fact damaged muscles and ligaments in the pelvis can even lead to ulcers in the bladder, see study in Research forum). But the ongoing stomach/digestive problems points more too IBS.

The PT you are seeing, has he/she done an intrapelvic muscle exam? For this, a finger has to be inserted deep into the rectum.

[thezach]

Hmm that's the only test left, looks like I'll have to discuss that with my urologist.

Yeah I'm currently in the process of testing for inflammation and Hpylori with my GI. The stomach issue was really bad initially but went away for a few months, recently it has come back. Although when my stomach issue went away the urinary symptoms still remained. The stomach pain is generally in the upper abdomen so I'm not sure how much it relates to the bladder too. I hope my GI finds something because IBS is another condition that's really hit or miss and my urinary issues are torturous enough on its own.

Regarding the straining, I was thinking that might be related. When this happened, I had been straining for bowel movements extremely hard since it always felt like a bit of poop is there. After a while of doing this, when I strained it somehow felt like I was pushing against my perineum instead of pushing through my anal opening, never had that feeling before previously. There was once I felt like something is finally coming out and when I used my finger to touch it, I realised it's acutally a small lump of flesh (hemerroids?) instead of actual poop. The urinary issue also never went away ever since that night where I strained to pee drops of urine too. Before all these happened I would also always feel like there's still some urine left before I went to bed, and would strain a couple of times to squeeze out a few drops before I slept. Also before exams I would strain to pee small amounts but I guess that was just stress, and only occurs in specific situations. Right now it's throughout the day no matter what my stress levels are.

Yup she have done the internal exam. How my assessment went is that she'll treat my pelvic floor as a clock and press on different points for soreness. There are some sore spots but I think normal people will have a few tender points too? But then she'll apply pressure and ask if it increases the urge to urinate but it doesn't really affect, so I'm not sure if it will help my urinary symptoms. She'll also release my muscles for a while, up to 20min and then ask if that helps me feel better but the bladder urgency is still the same.

Hope all these is not too much information but damn I need a solution to this.

[webslave]

No, tender points in the pelvic floor are not normal.

IBS can show as stomach discomfort, and it's related to UCPPS because it's often a comorbid condition, research has proved.

Getting an expert second opinion on the pelvic floor would be a good idea. I know of nobody in Singapore.

[thezach]

Oh ok. How long does it take to resolve the tender points in general? My first PT did around 6 sessions with me and she said that's generally the timeframe to notice differences. I think some tender spots got better but the urge to urinate still remained. Does not being able to reproduce the symptoms suggest that we may not be on the right track? I'm not sure what else I could to improve things since I tried all the medications for overactive bladder too. Currently doing stretches I found by CureCPPS and running regularly.

I'm still undergoing some testing before we settle on IBS. Hopefully resolving the stomach issues will help, although my doctors can't be certain in that area.

[webslave]

Unfortunately, getting help with a hypertonic pelvic floor is highly operator dependent. If she's not well trained, or her fingers are short, she may be missing the key trigger points. If you are wealthy, see one of the expert PTs in the USA. If not, keep doing stretches and diligently go through all the tips here: https://ucpps.men/viewtopic.php?t=9338

[thezach]

I would like to believe that a majority of specialised pelvic floor PTs are "good enough" to treat this, provided this is pelvic floor related, if not then the profession would be kind of messed up? I mentioned that I have been to 2 PTs, but right at the beginning I also had one session (insurance issues) with a 3rd PT from the UK's NHS who was working as an expat in my country. She did a thorough internal assessment and found a couple of trigger points, and also concluded that my pelvic floor was slightly tight but wasn't really conclusive on whether my urinary symptoms is due to the pelvic floor. She said it's possible. Also mentioned it could be central sensitisation since things has been going on for so long.

I also do have the occasional symptom of a feeling of "wetness" in my urethra to bladder immediately after I urinate, which gets better within half an hour and simply becomes the normal urge to urinate. Sort of like a water balloon feeling behind my pubic bone which makes the urge stronger. Do you have any experience what this symptom falls under?

I also thought about what you mentioned that this could be a subcategory of BPS/IC, but I never had any pain even with bladder filling. The closest condition seems to be Overactive Bladder but I have tried the medications and PTNS which do nothing. It's quite demoralising since I have been browsing the forum after I joined and the top threads in bladder frequency/urgency have people with similar symptoms who have tried everything and still haven't gotten any better despite many many years. I'm still doing all the stretches since there doesn't seem to be much options left, but it would be nice to have something that shows me that I'm in the right direction.

[webslave]

Wetness feeling is most likely allodynia.

Central sensitization leads to upregulation and that can account for a lot the symptoms you have. The key now is to allow the process to reverse.

[thezach]

Are there any ways that helps to reverse it? I'm doing most of the recommendations on the list of tips already such as PT, standing, stretches, exercising and all that.

Not really a useful diagnosis if there's little we can do to treat it.

[webslave]

Do the breathing exercises, listen to very relaxing music, plenty of sleep, amitriptyline in small doses (titrating up a bit), PEA, quercetin, pollen extract. Last resorts would be pregabalin, and gabapentin. Cognitive behavioral therapy if available.

Combine that with TIME, and most people recover.

Note there are some wildcards like diet, and for some people even gluten problems.

[thezach]

Ok thanks I'll add those too, maybe not the supplements since I'm not sure if they'll be available. Yeah I'm guilty of not having a proper sleep schedule. Urologist gave me amitriptyline to try previously for 2 weeks but stopped when it had no effect.

Hope it works because it feels like I have given it plenty of time already

[Balenul]

I can help you with many infos thezach...... you have my history is incredible.... exactly same..... you have a little prolapse there not haemorrhoids..... I had also. Condition can get better, pelvic therapy helped me a lot, but the therapist must be very good. We should talk on fb messenger, whatsapp or other application. Send me a message with your contact. I will share my knowledge since I studied this problem a lot and also seen one of best pelvic floor specialist in Europe.... the condition is hard to heal, but it can be better I am better now than last year, but is still a long road.

[thezach]

We could discuss here so maybe others can join in if they have the same issue? But I don't mind fb if that's what you prefer! From what I have read, you have been diagnosed with diabetes insipidus, bladder neck obstruction and pelvic floor dysfunction?

I have sessions with a few pelvic floor PTs and they didn't mention a prolapse. Do you have a prolapse too and how was it diagnosed? Currently I might be doing a cystoscopy but it may not find anything from what I've seen. That's great! What has helped you the most and what are your symptoms now?