UCPPS - Prostatitis, Interstitial Cystitis Forum

elias wrote: Tue Jun 29, 2021 5:59 pmHope some of this helps

Hi Elias. Sorry you’re dealing with something similar.

For me it is a constant 24/7 urge to urinate. Sometimes a very strong urge, so intense that I can hardly function and other times very mild. However it’s never normal.

After 25 years as you can imagine I’ve tried a hell of a lot. There is no doubt that my hip flexors and psoas and back are all super tight. I can feel the pelvic floor muscles spasm when I relax lying down and sometimes when doing stretching.

For me there is some obvious connection with nervous system and lack of sleep and stress and an intensity / flare up in the symptoms that can last days.

For those just beginning to deal with this and who have been declared “perfectly healthy” by the urologists, I would go straight into DCT stretching program, some form of relaxation or meditation and perhaps the David Wise approach with the internal trigger point release.

I’ve done it all, but perhaps I came at it after too many years of dysfunction to quickly reverse the symptoms. I believe if I knew if these techniques in the first few months after symptoms started, that I would have been able to reverse it.

Now there is an added element of anxiety that obviously makes the symptoms worse. But I think it’s party of a vicious cycle - symptoms flare up and I become anxious as to how bad it will be or how long it will last. If I’m anywhere social, well at this point in my life I make up an excuse and just leave.

After so long and so many medications tried, I can say that the only think that helps me:

• General reduction of severity of symptoms: Lorazepam/ diazepam
• Sleep (which allows me to reset and break a flare): Clonazepam and Remeron
• Very occasionally my doc prescribes OxyContin super low dose (like 5mg) which can help to break a flare.
• Super hot baths followed by lying still also helps with immediate reduction of symptoms for as long as i don’t stand up and walk around.

I hope one day this condition is readily understood and no one has to suffer. It’s shaped my life tremendously and I am not sure I can see the positives in it. I was once very into traveling and adventure and spontaneity and now I plan a lot around how I feel or how I think I will be feeling. (It took many years before I finally accepted that I have to plan around the symptoms)

It’s difficult because so many people don’t see the real me. Yes I’d like to fly there and do that, but no I don’t want to deal with a pounding urinary sensation the whole time. The few people I have told simply don’t understand because I look healthier than your average person and I am not in obvious agony.

Hi CMT:

I have some of the pattern you describe, except it now comes in bouts with periods free of symptoms.
Lots of sleep and long hot baths do relieve the sensation of urgency. The pain is now limited to post-ejaculatory. I avoid that altogether, because that triggers a long bout

I have learned that with chronic pain conditions, there's this phenomenon called "central sensitization" whereby the main issue is no longer in that local area but in the higher regions--the central nervous system-- which has been conditioned to perceive pain under certain circumstances...I'm not sure I'm explaining this right or if I really understand it very well..But it's a known thing

The question for me is whether this phenomenon of "central sensitization" may apply to chronically disturbing sensations other than pain, or it it only nociception based? In other words can something like that happen with non-pain sensations such as urinary urgency, itching, dizziness...etc..Whereby the original local cause is gone, but from pov of central nervous system, is quite actively there? It would probably need a different approach if that's whats going on...Remedies that focus locally on the urinary system might not work very well if such were the case and as you have already noticed.

Hi and thanks for the contributions. Just wanted to add to this chain for what it's worth. I also get a very similar cluster of features associated with frequency to what has been described above; its my only residual issue now.

• fluctuating frequency or abnormal urinary "awareness"
• usually triggered by ejaculation (masturbation and tensing definitely worse)
• sometimes goes away completely for periods, usually mild but occasionally bad
• also associated bowel issues/IBS symptoms. Sometimes I am awoken by stomach cramps. Bowel movements can help alleviate urinary
• also associated with lower back or hip issues

Main things that help me:

1. hot baths
2. hot water bottles
3. stress reduction
4. improving the IBS situation (I find partially hydrolysed guar gum has helped +/- probiotics)
5. amitriptyline -- I try to avoid this but use it now and again if really bad
6. relaxing during ejaculation -- easier said than done lol
7. quercetin ... I think it takes the edge off

If I could crack this issue I would be 100%

"also associated bowel issues/IBS symptoms. Sometimes I am awoken by stomach cramps. Bowel movements can help alleviate urinary "

Sometimes I'm awakened and can't tell if I need to pee or to poop. It's that interrelated

-improving the IBS situation (I find partially hydrolysed guar gum has helped +/- probiotics)

That got me interested. However, I see guar gum is some type of fiber. So far, all fiber preparations make the IBS worse. As do probiotics. I have IBS-C but sometimes mixed IBS-C and IBS-D.

To add insult to injury, lately I'm suffering from chronic anal fissures, which are readily healed by some fissure cream applied rectally. Fissures brought on by straining due to the IBS. It seems these recent bouts of fissures is triggering urinary symptoms. And in fact I'm reading about all sorts of reflexes from rectal spasms to the urinary system. Might it be that you guys have anal fissures, perhaps even mild ones, and aren't linking them up?

No anal fissures or IBS issues for me. As was mentioned, perhaps physically there is nothing wrong, but my nervous system is stuck in some kind of loop, interpreting various stressors as urinary urgency. Then again, my hips and back are super tight and all connected to pelvic floor so maybe it is physical. Or maybe it’s a combination of both. I don’t think anyone at this point really knows.

hi cmt:
havent gotten around to reading all 19 pages of this thread..so just wondering if you had tried alpha-blockers such as tamsulosin, alfuzosin or silodosin?

Yes tried all the alpha blockers. Apart from retrograde ejaculation, no improvement in symptoms. But just because it didn’t work for me doesn’t mean it won’t work for you.

I took Silodosin--a selective alpha-1 blocker-- for about 8 weeks and all my urinary symptoms were totally gone on it! But the side effects of fatigue and drowsiness were pretty bad. I wished it came in a lower dosage. Or tablet which I could cut.. After about 8 weeks, it stopped working altogether! No idea why. I then started Quercetin and aerobic exercises. Symptoms improved a lot, though not as markedly as with the Silodosin.

Alfuzosin had too many side effects for me as well..

Prior to all that, on another occasion, I had taken Tamsulosin for a kidney stone for about two weeks. I was pretty much asymptomatic (from pov of CPPS at that time) I don't recall any side effects at all with Tamsulosin. I did notice a much wider, smoother stream, which I guess may have helped pass the stone. But not sure how helpful it might be during a frequency/urgency bout. Or how long it would keep working..

The fact that I responded very strongly to the Silodosin (at least for those 8 weeks or so) suggests that the cause of my urinary condition was primarily smooth muscle hypertonicity, specifically at urinary alpha adrenergic receptors. Which is why I'm trying to figure a way to achieve something like that without something as powerful as Silodosin -with all those side effects

I think my case is similar to what Ranzzar describes in the post from Jul 2.
Maybe we can exchange more info.

Stefan

Hi Stefan, how are you going with that? My sensation of "urinary awareness" waxes and wanes still. I try to ignore it but sometimes its difficult. Happy to share any other insights
Ranz

Ranzzar, after excluding all possible causes (through tests, scans, cystoscopy etc.) my uro thinks it is " tight / spastic pelvic floor / external urethral sphincter" and he sent me to an experienced pelvic-floor PT. Ten days ago she did gentle "mapping" of my trigger points and just a little bit manual therapy on them. I felt okay or maybe the same after that. Yesterday was the first real PT. I think she knew not to overdo it but maybe it went just a little bit too long. I had to do also some stretches in their gym before that. So, few hours later I started feeling more urgency than usual flare-up, which is unpleasant but actually means that those TP-s are really connected with my issue. I am waiting now to subside and eventually get better. I also decided to start working with a functional medicine doctor on another level to get to the bottom of the disbalances I have in my diet and life-style.

I have exactly same symptoms as you guys. They are exactly same. You can read my story, all started after I got a pituitary surgery and diabetes insipidus, cmt23 you are a hero, I only have this for 11 months and sometimes I can t take it anymore, also I feel normal in bath and if I stand still if I stand, walk is a nightmare. Did 4 sessions of dry needling and he said I got a lot of tension in my abdomen especially, and I think is mainly a muscle and nerve problem. I felt way better after first 2 sessions but next ones did not improve me sadly. After I had a spinal anaesthesia I had no symptoms, 0 urge and next days things got better and after gradually worse, I really want to try a good pain therapist. Cmt23 you tried the hypogastric block? I really consider it.... Damn you guys have all of my symptoms, feel worse after a bowel movement, fell worse after I pee (sometimes I pee and is a stronger urge in 30 sec).... I really think is more a nerve problem than muscular one... Or both, what helps me more after hot bath is if I use a strong gel (like those for back pain) on my pelvic and abdomen. BTW my symptoms also get worse if I am coughing or doing a Kegel : (I hope we can find a cure really

Cmt23 u did urodynamics ? I also have a bladder neck obstruction and it can give similar symptoms to what we experience , but in my case I am also sure is a nerve and muscle problem but the bladder neck obstruction made all worse.

Hey @Balenul did your tests show anything? How was the bladder neck obstruction found? I have done a lot of tests including urodynamics but everything was normal. I have the same symptoms as you too.

Hey thezach, I am sorry for your suffering. It's horrible. Soon almost 2 years with this problems. They did a cystoscopy and video urodynamic. Atm they said primary bladder neck obstruction, and pelvic floor problems... I will do the bladder neck surgery maybe will be better. For how long you suffer and how did it all started ?