My case - looking for advice and help

[StefanS]

Hello there,

I discovered this forum about a week ago and am very happy about it. It is a treasure trove of information. And help - given the fact that doctors today have no more than 10-15 min to listen to a patient. I apologize for the length of this post - please, feel free to skip as much as you want :-) Thanks.

Some background info: I am 54 yo, 5'9" 176 lb. Live in DC area. My first problem was in March 2020 - persistent pain in the right testicle - epididymitis after lifting something heavy. 1 week Bactrim seemed to cure it.

Later this year - in August I took care of an unrelated sinusitis problem where the doctor prescribed Maximal Medical Therapy for sinusitis: 9 days of 30 ml prednisone with 21 days of 500mg clarithromycin. On the 6th day of prednisone I started having urinary urgency in the evening. Since then - on and off I always feel some discomfort in my bladder. After many visits and consultations with urologists and a nephrologist they couldn't find anything wrong with me. Dipstick and culture showed no infection. CT scan - ok. Ultrasound - good prostate, voiding, stream etc. Oct 15 after especially bad night and episode of turbid urine another urologist started me on Cefdinir and some Flagyl send my urine for PCR and NexGen seq analysis to hunt for bacterial (and fungal) DNA. After 15 days - fluctuating urgency problems the results came - they found 4 bacterial species but <10000 DNA copies/mL which means - could be part of my microbiome and not infection. Nevertheless he kept me 15 more days on another antibiotic - Levofloxacin and nothing changed. Ten days post antibiotic send urine again - PCR empty, NexGen Seq - some small amounts of E.coli and E.cloacae - usual inhabitants of these parts again <10000 DNA copies/mL On Nov 24 - started Pelvic floor therapy and also saw physiatrist who started talking about pain injections and Diazepam-Baclofen-Gabapentin suppositories. Checked again prostate with transrectal ultrasound - good and cytology - negative.

Current state: I listened to the doctors and read a lot (being mol. biologist myself) at ICNetwork and on this forum. It turns out there are few red flags before all this started in August:

• I used to drink 6-7 espressos/coffees daily in the last few years (stopped in November)
• during the summer - 3 months period I was taking vitamin C (EmergenC) - 1000mg daily
• in March 2020 started rigorous regime of walking (7 miles daily) or cycling (20 miles daily) and lost 25 pounds the most healthy way - sport and intermittent diet

While the urologists thought - OAB and prescribed anticholinergic med and blockers (which I didn't take yet) I saw all signs of IC and the PT people and ICNetwork person think the same - they talk about neural crosstalk in the region of the pelvis. December I was almost symptom free most of the days. It started again Jan 3rd 2021. I confess - I drunk half bottle of wine on the NY eve but I had Prelief.

Here are my symptoms: I have the feeling of full bladder most of the time but I pee normal amounts and could easily hold it. After I pee I feel unbothered for about 15 min but even at that time if I press on my bladder over the pubic bone I will feel urgency feeling. The bladder is simply sensitive! No problems with ED and ejaculations. I have the best dipsticks (Siemens) and always - when I measure - my urine is OK - except for SG which is always high - 1030. Few times I head episodes with single turbid urine - with higher pH - and then never again. Mystery?
Also I have sensitive digestion but nothing much. Maybe some touch of IBD/IBS or whatever they call it. Try to eat healthy and mostly no problems BUT whenever I get messed up from bad food or antibiotic etc. and if it is few days - it seems to mess up and to keep the bladder sensitive too.
Tried some L-Arginine and PEAORA for few days but then dropped it.

Trying not to go down the rabbit hole of one medication after another - had my fair share of antibiotics last year and was for nothing.

Thanks,
Stefan

[webslave]

Prednisone leading to urinary urgency is well known because prednisone can make the sugar (glucose) in your blood high. High sugar levels leads to frequent urination. And sugar can cause a sudden flare in UCPPS symptoms because sugar creates a surge of uric acid in the blood. Sugar consumption increases blood levels of uric acid (PubMed PMIDs 2497634, 677070) and causes a spurt of uric acid to be excreted via the kidneys/bladder/prostatic urethra, so causing discomfort to potentially inflamed tissues there.

That was probably the trigger than turned a subclinical (asymptomatic) case of UCPPS into a symptomatic case.

Now it's maintaining itself, which is often the case.

Keep away from ICNetwork, is my advice. It's a site run by someone who unethically and cynically promotes the use of NexGen while declining to use it herself: viewtopic.php?f=45&t=9182

Be careful of Prelief: viewtopic.php?p=55538#p55538

Be careful of alcohol: viewtopic.php?t=7741

Your bladder now responds to normal stimuli with 'discomfort' (your word). That's called allodynia, hyperalgesia, and may fade with time if you do not reinforce it with CNS attention.

High dipstick SG means you need to drink more water. My suggestion is chilled chamomile tea (sweetened with sucralose if you find it hard to take straight up).

[StefanS]

Thanks webslave, for such prompt answer.

Also, I am amazed that you found connection between the prednisone episode and the uric acid and the irritation of the bladder lining, I suppose? Speaking of lining - one urologist offered hydrodistention but I refused - too aggressive. The other said it is of no use for me at this moment. So, I was very hesitant to do the prednisone but this big-shot ENT convinced me and I am so angry to myself for doing this chronic-sinusitis unnecessary therapy this summer. Maybe this subclinical UCPPS would have reminded subclinical forever!!! All doctors said that the prednisone was too short time and small dosage to cause big urinary problems on endocrine level, but I always had the hunch that it triggered something - plus I helped with coffee and chocolate.

I eat a lot of sweet every day - mostly mix real organic expensive honey with sunflower-seeds butter or almond butter and this allows me to forget about chocolate. That being said I am absolutely capable to lower the sugars to minimum - just from the carbs in the bread or from fruits if this will
help get rid of this.

1. Do you think it can really fade? I would like to do everything which is max beneficial for this purpose and ready to follow strict rules if I can read somewhere some literature (you can maybe pinpoint) for exactly my case. Btw. I avoid all foods bad for IC.
2. Here I have to ask - do you think the PT and the TP massages, the suppositories, and some of the dietary supplements make sense? And - is it better to urinate more frequently - when you feel it or always to hold at least 2-3h?
3. I can drink chamomile w/o sugar. Also sometimes drink Aqua Panna water which is pH>8. Thinking of trying few days baking soda drink in the morning.
4. "That's called allodynia, hyperalgesia, and may fade with time if you do not reinforce it with CNS attention." Do you mean I should stop obsessing 24/7 and this will help - kind of Sarno method?

Thanks,
Stefan

[webslave]

1. Yes it can, and does. There is no instruction manual for overcoming UCPPS that works for all people. We are all genetically different and react differently to the various stratagems known to help the condition. You need to read this website to pick up pointers.
2. Yes, firstly to find out if you have muscle spasm in your pelvis that set you up for this, and put you into the subclinical category, just waiting for a trigger like prednisone. Secondly, things like quercetin could undercut any inflammation. So tackle this energetically from every angle. I have no opinions on holding back on urination. I'm taking as my starting point that the OAB is secondary to the UCPPS.
3. I would not advise you to do try to alter urinary pH at this stage. Just flavored water is fine. Cut the sugar.
4. Yes, long term is could be a big help in overcoming the condition.

[StefanS]

Thanks a lot. I will read the articles.

[StefanS]

So tackle this energetically from every angle.

Okay - I see 2 angles - muscle/nerve crosstalk and chemical irritation of the bladder.

1. For the last 5 weeks I am doing Pelvic floor PT once a week and they told me that I have "very tense muscles". We are addressing this through stretching exercises and internal massages of trigger points. They say that this is extremely important and maybe it is. However one think that bothers me is that I always have had tense muscles - even 10 or 20 years ago long before my bladder problem started in August 2020. Is the biggest problem muscular or simply the PT-s see muscle problems in everything? I try to be very diligent with the PT exercises but for now I am not sure in the effect and also I am refusing to do 6 series of very expensive lidocaine ultrasound-guided injections into trigger points. Another thing they want me to try eventually is 2-weeks daily suppository of diazepam-baclofen-gabapentin in the evening. Tried for 3 nights - made me drowsy in the morning but slept well, however it maybe addictive. Not sure whether to continue.
2. On the second front - eventual irritation of the bladder lining:
   1. I have never had cystoscopy or hydrodistention - it is very invasive and even the urologist here in DC/Maryland is not sure whether I need it, given that my urinalysis and cytology are normal. Therefore I do not know whether my bladder has irritated tissue. The only thing urologists can offer are beta-blockers and anticholinergics - with a lot of side effects and probably unsuitable. I am reading a lot about Quercetin here and I ordered one from AmazingNutrition - 500mg capsules. Any advice - should I give it a try? What is the best way and does it have side effect? Believe it or not PT-s and MD-s don't know anything about that.
   2. And here is something else after I talked to my father few days ago. My father who is 83 - retired university professor - in relatively good health and lives in Bulgaria told me that he started having similar problems after the age of 65. Doctors there, in general avoid invasive stuff. He was able to get rid of his symptoms through diet modifications and cutting significantly on wine and coffee. I never knew that about him. Hearing about my new problem he told me that about a year or so ago he had a flare of bladder problems triggered by wine and acid/spicy food he took at certain occasion and it was bad. Didn't want to calm down (given his age too). But there is a herbal tea which calmed him down within a week. It is a very old brand of several medicinal teas composed in the 1950-s by a MD called Lambrev who was dedicated in researching the old regional Bulgarian/Balkan herbal traditions and later with the help of the state created couple of medicinal tea blends for several conditions - only from defined plant species and their percentages - no unknown ingredients. These blends are open knowledge for decades and have helped many people in Bulgaria and surrounding countries for at least half a century. Sometimes MD-s are prescribing them as therapy. There is only one blend for the urinary system - refined and unchanged for decades - and my father is asking me to try it. He is very careful in these matters and is my father - but he is sure that this will calm my bladder irritation. I would like to put in my next post its ingredients - with their English and Latin names and % and see if anybody can say something about that. I ordered it from the herbal company in EU but while I am waiting I will give Quercetin a shot and would like to discuss this tea - which is really with long tradition and supposedly no side effects.

Thanks,
Stefan

[StefanS]

The Diuretic "Lambrev" Bulgarian Tea for Kidneys (and bladder) I refer above. Looking for comments about the ingredients.

Ingredients:
Birch - cut leaves (Beatulae albae folium) - 19%
Bearberry - leaves (Uvae ursi folium) - 19%
Mallow - leaves (Malvae silvestris folium) - 7%
Equisetum - stems (Equiseti arvensis herba) - 10%
Hawthorn - crumbled leaves and blossoms (Crataegus - folium cum flore) - 10%
Restharrow - cut roots and rhizomes (Ononis hircina) - 7%
Valerian - rhizome (Valerianae rhizoma) - 7%
Elecampane - root (Inulae helenium - radix) - 6%
Monk’s rhubarb - rhizome (Rumex alpinus - rhizoma) - 3%
Linseeds - whole seeds (Linus usitatissimum) - 6%
Golden rod (Solidaginis virgae aureae herba) - 3%
Yarrow (Achillea Millefolium herba) 3%

Brew 1Tbsp in 500ml (16oz) with boiling water for 30 minutes. Filter through gaze. This is good for one day - 4 times a day ~100ml (3.5 oz) Once room temp - put in refrigerator til the rest of the day.
Four times per day, at least for 3 weeks. On the sixth day increase the dose of 2 Tbsp instead of 1Tbsp. After a break of 5-7 days, the course of treatment may be repeated.

[webslave]

You seem to be a bit hypervigilant, for instance talking about "addiction" when asked to take a simple course of suppositories. And second-guessing the PTs' finding of tense muscles, and their effect. This makes you a difficult patient for uros and PTs (just so you know how they see you).

1. The fact that you have had tense muscles all your life is not important. Eventually, as stresses in life mount, there is a final straw that breaks the camel's back. I agree that you should be cautious of the injections, but you should finish the suppositories. There is no addiction risk after only 2 weeks.
2. Bladder lining:
   1. Cystoscopies are not "very invasive". They are a routine urological procedure done on an outpatient basis. I had one without any form of systemic anaesthetic, just a gel in the urethra, and deep belly breathing. The uro was impressed, thought I had "self-hypnotised". Side effects of a-blockers are minimal, certainly worth a try. Quercetin is definitely worth trying, but not any old brand (tests show that they often have little or no quercetin inside), get something with a guaranteed content like any accredited quercetin product or Quercetin.
   2. Your father's problem was almost certainly BPH, not CPPS, so his experience is not relevant. If you try the tea, try it on its own and not while using other medications, so you can be sure of the effect.

[StefanS]

Thanks webslave!
As usually very good and useful insights. BTW, I do not doubt the PT insights of tense muscles, just doubt how big part of the problem those are. Nevertheless I am going on with their regimen and plan to do so for few more months.

1. Yes. I will finish them. But should I try Quercetin while doing sups? - in order to be sure of which has the effect. The brand I bought is #1 in Amazon now - made in USA, vegan, non-GMO blah-blah but seems people like it >7000 reviews. I will try the Q- brands too. Some people here complained of digestion problems and given my sensitivity in this area I was not sure if this is incidental report or something that Quercetin is known for.
2. 1. You probably mean that diagnostic cystoscopy is less invasive. But not the other one known as "hydrodistention". I must talk with my uro again about that. He is not very eager to do it on me but says that before doing it he cannot do any further diagnosis and I can just try meds - trial and error way. I don't know what is your opinion about the necessity of diagnostic cystoscopy at this moment for a case like mine. Maybe after few months when all possible PT-s and supplements fail to produce improvement but before heavy-duty meds?
   2. Yes, my father has BPH (know because of his other med) but very sensitive on the IC foods too so I was thinking maybe both. So why not giving it a try. That was my thinking. I may wait almost a month for the package to arrive - so not an urgent issue right now.

[webslave]

1. Ideally you should try one thing at a time, or else it's just "shotgun medicine" that can leave you confused about what's helped. However, if people are in a lot of pain that is deeply affecting their lives, I say just use things concurrently and don't worry about cause and effect. The Amazon brand may be okay, but I cannot vouch for it. Any accredited quercetin product does not cause the (rare) problems that any accredited quercetin product can (due to pollen extract).
2. 1. It's always good to get a baseline cysto when you have a lot of bladder issues, just to rule things out. Hydrodistension can be therapeutic https://pubmed.ncbi.nlm.nih.gov/29566264/
   2. No harm in giving the tea a try

[StefanS]

I did the 2-weeks daily suppository of diazepam-baclofen-gabapentin every evening (Jan 12 - Jan 26) and during that period I felt practically symptom-free. During the last 10 days since then I have had several half-day periods of urgency and today it is especially strong. Today is also my third day of taking daily 500mg Quercetin. Asking myself whether there is any connection, but it is illogical! Any experience with weird effect of Quercetin? Maybe also insomnia?
I got another batch of suppositories. Maybe should do a second course?! Although the physiatrist gave me refill, she told me to do only one course. Not sure. Anybody knows something about that? Also, I think, walks in cold weather may increase urgency.
Back on the topic of cystoscopy. Rarely, but sometimes in the morning or if I hold very long I can easily have a urine volume of 450ml and as far as I know it is not typical for true IC.

[webslave]

A second course would be fine, and even a third, but after that, be cautious. Wait a few months before using them again.

Cold weather does make symptoms worse, see
viewtopic.php?f=4&t=7879

Quercetin should not be causing insomnia or urgency, but stop it for a while and test it again in a week or two, after symptoms have settled.

And BTW, thank you for the extra $20 donation, much appreciated!

[StefanS]

Thanks webslave.
I have a long scheduled visit to urologist Dr. Robert J. Evans at Wake Forest Baptist Health in Greensboro NC (5 hr drive from DC). He is supposedly one of the best IC specialists among urologists. In about 10 days. I will see what he may suggest too. The other pro-active thing I am doing is - I will try online sessions with Karl Monahan. Read a lot of good things about him. My current PT-s are basically done with me for the next few months. Have some exercises from them to do home. Not super happy with them.
Trying to triangulate here - using the insights of two different types of specialists: uro-s and PT-s/physiatrists. The insights on the third group of knowledge: nutrition and supplements - I get mostly from this forum. Does the suppositories effect suggest more of a muscle/nerve issue than internal bladder issue? Any advice is always appreciated. :-)

[StefanS]

Forgot to add: I used the suppository last night and the urgency disappeared during the night and today all is normal. Two other peculiarities:
1) yesterday at the hight of the urgency episode, I used dipstick and it show ph 6 or 6.5 instead of the usual pH 5. Like on Oct 15, 2020 and two other such episodes in between with turbid urine (not this time) and ph>6. So from time to time I have some short and more bothersome periods with basal eventually turbid urine.
2) I have some day (or half a day) with slight urgency bother and my urine output is smaller: 100-200ml even if I drink a lot for almost all day, like if the water disappears somewhere. And then at some point I can start having much bigger outputs - like 400ml and bother disappears.

[webslave]

Does the suppositories effect suggest more of a muscle/nerve issue than internal bladder issue?

It's both. Nerves can inflame the urothelium, as explained here:
https://ucpps.men/chro ... condition/

Don't think pH is important.

Urine output is dependent on many things: intake, activity level and sweating, ambient temperature and humidity, consumption of salty foods, etc. It's best to stop focussing on pH, output etc. With IC/CPPS, obsessing about your body and symptoms actually makes the condition worse.