Cystoprotek

[extreme3]

I've had a lot of success the past week with Cystoprotek. This is a supplement designed for IC sufferers but it does contain a Quercetin component to treat inflammation. I still have mild nocturia symptoms (1-2 times per night), but the pain has subsided significantly and I can sit an entire day at work without too much discomfort.

I've tried any accredited quercetin product and any accredited quercetin product in the past with no success. However, I may have been using these in conjunction with other supplements/meds at the time and that may have negated their effects.

So far, I'm very pleased with the progress - I would say about 70% back to normal - if I can remember what "normal" feels like. I'll keep you posted.

[extreme3]

Just as an update - I'm not convinced I can correlate Cystoprotek to symptom relief. The pain waxes and wanes without any identifiable pattern (yes, sitting too long is definitely a guarantee for pain).
All I can say for sure is stretching and light exercise are guaranteed to bring relief.

[DMcU]

Hi,

I see too, that you have suffered with this for 2 years. If you look around this forum you will see that many people really start to improve after 2 years. I have this over a year now and the improvements are small but I feel they are there all the same. I, like you, am able to sit for a long enough a period and be relatively pain free. Anxiety has become a factor lately which can only add to the neural wind up and muscle tension but I'm working on it.

Has your urinary frequency improved? I'm on quercetin too, as any accredited quercetin product can't be got in Ireland and I don't have a card credit that they accept. I can't say if I find it beneficial or not, I'm doing a lot of other things too!

[extreme3]

Yes, my urinary symptoms are pretty much non existent now. My only problem is nocturia which can be mitigated by not drinking anything before bedtime.

My pain now is more of an annoyance than anything crippling. I think once I realized this condition was not life threatening, I cut the catastrophic thinking and treat it as a nerve/muscular disorder in the pelvis.

I'm just angry that I've spent the past 2 years coming to this conclusion myself. I hate that this has taken so much time from my life but hopefully now I can manage this to as complete a recovery as possible.

[DMcU]

You have the right attitude. I, like you, had to come to the same conclusion. Doctors refused to agree or admit I have this. The thing is that we all have the same condition, as far as categorising it, but that we have our own versions of it, everyone's case is different and we can all learn from each other as we recover. But we will recover. Yes this is definitely a nerve/muscles disorder, and it's not life threatening. We aren't 'unhealthy' just because we have CCPS, we can be completely 100% healthy, and I think that trying to be healthy in all aspects will help rid us of this.

One thing I have noticed about whether this is muscle or nerve problem is that if I have a few drinks, that the next day I don't seem to be too bad. My muscles definitely aren't too bad at all. So, maybe in my case, this is muscular, as if this was nervous, and my bladder was very sensitive, that the drink would cause it to become inflamed and thus make me want to pass urine.

I try to drink a glass of water (1/2 pint) before bedtime and I will leave another by the bed that I will sip if I wake up at all during the night. I find this helps to dilute the urine and make it less acidic and burning in the morning.

I feel that this will eventually fade away into the background for most people.

Do you attribute any particular treatment/medicine/protocol to your improvement over the past two years or is it a mix of everything?

[extreme3]

In the beginning, it was a lot of experimentation (like so many guys on this board). Its common to freak out in the beginning, think you have cancer or some debilitating disease, wind up the anxiety and it's all downhill from there. I mean, when you have a headache, which are much more common and documented, it doesn't mean you have a serious brain disorder. I think the ignorance surrounding this condition is what makes it so tough for everyone to treat.

I went on a treatment of Lexapro and Atvian for some months which seemed to help. After I went off that, my symptoms spiked up a bit so I began to equate the anxiety management I was getting from the drugs as something I needed to continue somehow.

A month ago, I started working with a PT who advocates treating the mental aspects of pain disorders. His regimen incorporates breathing techniques and stretches to help with the healing. This has inched me closer to recovery as well.

So in short, it has been a combination of things. I think time helps a lot in that it takes time to heal, anxiety management (whether chemically induced or otherwise), physical therapy to treat the muscular/nerve aspects and avoiding certain dietary triggers (which target the sensitive bladder and prostate).

I really think the bladder and prostate are victims and not the culprit of the muscle/nerve inflammation which is why they become sensitive in the first place.

I agree, I think it will eventually fade into the background for most people over time.

[DMcU]

I'm lucky in that I don't have to get up during the night to pass urine. I used to have to. But I get up early enough for work anyway, and all's grand until I stand up, then I get an urgency. I suppose this is the urine that has been building up over night and that the bladder is sensitive to. I havn't identified any dietry triggers but I stay away from spicy foods anyway. I would agree with you about the prostate and bladder, they are stuck in the middle of it all and are definitely going to be affected in some way. My PT doesn't feel qualified enough to do the internal, nor did the last one. So I havn't been able to find trigger points. I do have the urethral pain and burning which is most likely caused by a trigger point in the pelvic floor.

Chilling out and realising that this aint a life threat is important.

Did you find internal tp's responsible for some of the discomfort?

[extreme3]

I never really explored trigger points up to this point and I'm not sure I need to. I believe that I may have trigger points but the stretches may be hitting them sufficiently enough. I think everyone has a different degree of trigger points and some need releasing through manual intervention and others can be treated in a less direct way.

For example, I never experienced the "golf ball" feeling that so many guys talk about here. I've been limited to a burning pain in the rectum/perineum area which may be more easily targeted through stretching. I know that many trigger points are not so easy to find or address.

In general, I feel like I'm getting better but I know it will be a long road. Too many guys here are looking for a quick fix and it just ain't out there right now. I do believe a collective approach of subtle changes can do a lot for the condition and get you on the path to healing. This board has been a great educational tool that should be at every physicians fingertips and just isn't. I can't believe some of the garbage I hear from these urologists. I think that is the most discouraging thing of all and leads many men down dead end paths of despair and hopelessness. Sometimes they even make their conditions worse by listening to the "experts". Sad, very sad indeed.

[webslave]

It's worse than that. Even some major medical textbooks are still out of date on this condition. I'm afraid it's not a "sexy" condition, and almost nobody in the medical world cares about it.

[jVan]

Sorry webslave, but I totally dissagree. There is a current push for research on CPPS, with lots of grant dollars behind it. That money is what interests the research to continue.

As to the chstoproteck vs . Any accredited quercetin product vs quercetin, they all work. Some brands of quercetin seems to work just as well as any accredited quercetin product ever did, though since prices are similar I'd stick with the any accredited quercetin product formulation since its designed for this condition specifically, and the studies are based on it.

[fobo]

Not much success for me with Cystoprotek. I still have 3-4 bottles left to try though.