My case - looking for advice and help

[StefanS]

Thanks. Btw here is a video with 9 stretches very similar to what my PT gave me and she saw it and said that it is also good for me. It is very nicely made without any clutter. However I am doing 30 sec instead of 2 min of each exercise for now.

Somebody may find it helpful too.

Well, Dr. Wise gave me a name of an uro in NJ who is trained by pelvicpainhelp or close to them and advised me to see him for assessment. I will see him in a week. Until then I am taking only PEAORA and Quercetin, and PT of course. Then I will decide on the heavy meds.

Admin comment: Sounds like a reasonable plan ✔

[StefanS]

Well, I did some searches on "aloe vera and cancer" for review articles in pubmed from the last 10 years and ordered them by date.
That's the url of the search:
https://pubmed.ncbi.nlm.nih.gov/?term=a ... e&size=200
From 39 review articles there is only one (#20) Guo et al. 2019, (cited above) about the carcinogenicity of whole-leaf extracts while the rest 38 were about either anti-carcinogenic effects of aloe or on another topic. I will check the whole articles tomorrow from work of #-s 5,8,11,14,16, because I think they are the relevant ones

I checked the IARC website where "aloe whole leaf" is cat 2B - possible carcinogen. The groups are (1, 2A, 2B, 3=non class. as carcinogens).

Then I checked IASC at iasc.org and saw that only "Aloe vera, non-decolorized whole leaf extract." is in Calif. prop. 65

Then I went to Desert Harvest site (aware of biases ) and checked the product:
"Desert Harvest Freeze-Dried Aloe Vera Capsules contain the highest super-strength concentration (600 mg per capsule) of 100% organically grown, non-GMO Aloe Vera not found in other brands. We use no pesticides, herbicides or fillers. Our patented process removes all water, insoluble fiber and anthraquinones (laxatives including aloin) and retains the pure potent active nutrients"
I am planing to ask them on the phone tomorrow whether their product Super-Strength Aloe Vera (180 Capsules) is IASC-certified and whether it is decolorized yada, yada ....
Planning to go to the bottom of this "discrepancy" between Guo et al review and other reviews and doctors aside from DH. I use quotation marks because I think what they sell is actually high quality product which is not "whole-leaf" and has nothing to do with the juices etc. non-medical diarrhea-causing products. But I will check.

[webslave]

If only everyone researched things as well as you do. Well done.

[StefanS]

Spoke with Desert Harvest yesterday. They reassured me that their product is indeed clean. That was not a surprise. Then I asked how long people have been taking it. Their answer was - decades. The owner had/has IC and started this all in the 1980s/1990s. Since then the business and the clients increased a lot.They have White paper etc. I was advised to go on their website and see under Learn->Why Desert Harvest Aloe Vera vs. Other Brands some basic info.
Downloaded the 5-6 papers and only browsed through them but nothing concerning. If I get more time I will read more.

[StefanS]

The Aloe double blind, placebo controlled study study is registered at clinicaltrials.gov
Seems they are enrolling still men and women but they want pain>4 and frequency>11/day - so not for me - I have 6-8/day frequency 99% of time
https://www.clinicaltrials.gov/ct2/show/NCT04734106

[StefanS]

I have two practical questions about bladder supplements:
1. Is there any accredited/recommended quercetin except Prostate PQ? One which has only quercetin - without pollen? Searched all evening but cannot find pure quercetin accredited by one of the 4 labs.
2. Which OTC has the best reputation: Bladder Builder, CystoProtek/CystoMend, or Bladder Rest?


Thanks

[webslave]

Bladder Builder. Contains quercetin. I recommend certified products only, but note in my own case, which pre-dates all the modern products, I used Twinlab Quercetin Plus C.

[StefanS]

Thanks.
I ordered Bladder Builder. They do not say what is the exact amount of Quercetin in the mix but let's hope it is the optimal one.
I was asymptomatic almost 2 months but had a week of urgency so, during flare-ups, I would like to use Bladder Builder and Desert Harvest Aloe. Only during flare ups. Such light touch of natural medications and pelvic stretches plus sport and stress reduction seem to do the job in my case.

[StefanS]

Some update. I had a very good period of 1-2 months. Mostly calm - very little irritation. The last 2 weeks had some flare-ups because of spicy food, more food variety and wine.

And just as it was calming down I had some social event which led to short episode of receiving unprotected oral sex. It caught me by surprise and I could not refuse right away but I got paranoid and stopped it after few minutes and quickly took a shower and urinated - as a precaution. It was a mistake on my part because I did not know the person well and also she was coughing but claiming that is on her last day of antibiotic from some cold etc. It was kind of sketchy - short lapse of judgement. Now I have kind of flare-up and not sure if it is a "usual" or had anything to do with the encounter. I waited 3 days and did chlamydia/gonorrhea test in Quest. Not yet results but they will be probably negative because my dipsticks show Leucocytes or Nitrates negative too.
Is there any knowledge about the effects of sexual mishaps of that sort on people with UCPPS or sensitive/irritated bladder. Will an UTI or e.g. chlamydia infection eventually have synergic effect or post effect (after ab treatment) on the persisting problem of UCPPS? Is something known about that?

[StefanS]

Hi webslave et al.,
I haven't been on the forum for few months and here is what happened in the meantime:
After my last post (end June 2021) I went to Europe for almost 2 months - July and August. At the time I was leaving I was in the middle of a small flare-up after two months of relative calm. The first ten days in Italy I decided to start living normally and to try to forget my bladder problems. Started drinking ONLY one cappuccino at breakfast and some beer at lunch or diner. Interestingly nothing got worse. Then I was a week in Prague and tried a lot of beer. It increased my urination but in a normal way. Then I was almost a month in Bulgaria and enjoyed every morning a nice fresh Balkan breakfast: banitsa (pastry) and boza (thick sweet fermented beverage) while at lunch or diner consumed among other things tomato salads, fish, beer and brandy. I had fluctuations now and then but nothing special and I would call this a period of calm.
When I returned to US (Maryland) - within a week or so my digestion got off balance. Maybe this caused that I started getting too many periods of bladder urgency and finally went to a new urologist who was recommended to me. After seeing my case he suggested that we take a step back and start from the prostate. He gave me Alfuzosin 10mg for 3 weeks and at the end of this I will make all possible non-invasive tests - urodynamics, uroflow, ultrasounds etc. and we take it from there. He things I am not an IC case.
Now I am on my second day on alfuzosin and it made me pee very often (12 times) and also my sleep was not the best. I thought the effect should be the opposite. Does anybody know if this is coincidence or why the relaxing of the muscles of the prostate and bladder by alpha blocker should make me going to pee more often?!
Everything is very weird but I kind of gave up on my dreams for recovery and am strangely calm. In Europe I almost thought that I am out of the woods.

Stefan

[webslave]

Frequent urination is not a alfuzosin side effect AFAIK. Looks like your uro thinks you may have some BPH. I still think you have IC/BPS and you should stick religiously to the IC Diet (NO coffee, chocolate, etc and restrict salt)

[StefanS]

New urologist after being unsuccessful with alfuzosin did uroflow and ultrasound of bladder and kidneys with me.
Today we met to discuss results. Here is what he said:
- "uroflow shows that you may have a borderline obstruction problem. Your bladder is using too much pressure while the urine flow is not excellent"
- "I cannot think of any pills to try now" (good! I like this approach )
- "I suggest we do two more tests - flexible cystoscopy and urodynamics to go to the bottom of this"
- "my office will contact you to schedule those tests (urodynamics first) if you want"


I am still weary of the consequences of those two tests and asked him openly about it. Here is what he said: "From the millions" (exaggeration ) "times I have done this, did I have a case of a person who said that those tests ruined his life - yes. But 99.9% there is no consequence whatsoever except little burning feeling after."

I would love to know whether you will do it if you were in my shoes, webslave.

[StefanS]

This week I went to NJ - first to see a new, highly recommended PT and second to finally do the flexible cystoscopy.
First day: I was very impressed by the PT. She found many trigger points and explained to me what they mean and what should I feel in order to be sure it is a trigger point. In the beginning she also palpitated my abdomen and figured out many things, among them - my appendectomy 17 years ago and post-appendectomy scar tissue. She was very surprised that the previous two PT-s in Maryland could not detect my trigger points.
Second day: I finally did the cystoscopy. My uro (recommended to my by Dr. Wise 8 months ago) knew my fears and did this very carefully. I looked at the screen and he explained to me that "everything is normal". He already had the report of the PT from the day before and said: "Now we know what to do." He means pelvic floor PT. I also had blood traces before the cystoscopy (which I never had) but he explained that this is probably from the extensive palpitation and PT the day before and not to worry.
Aftermath: The constant stinging stopped within an hour. The stinging during urination and visible urine-blood stopped within 18 hours.

As of now - 52 hours later - my urine looks totally normal. The dipstick still shows traces of blood but less then yesterday.

However:
In the last 24 hours I feel more easily urgency and from smaller volumes. The urine looks very normal. I have no stinging in the urethra whatsoever.

Here is a question: Could it be that this increased urgency is a result of the cystoscopy which was two days ago? Or is it kind of a "regular" flare up?
Are there known cases where even well-done flexible cystoscopy itself was a reason for the urgency to become permanently stronger?
Just wanted to pick your brain, webslave. Thanks.

[webslave]

She was very surprised that the previous two PT-s in Maryland could not detect my trigger points.

This is the biggest problem in this field: operator error.

Could it be that this increased urgency is a result of the cystoscopy which was two days ago?

Definitely.

Are there known cases where even well-done flexible cystoscopy itself was a reason for the urgency to become permanently stronger?

No, I have not heard of that.

[StefanS]

Thanks, Mark
I suppose you would not know how long such post-cysto increased urgency may last but if you have a best guess please let me know.
Best