Where to start and how to find a good PT?

[netLynx]

Hi everyone. My name is Sean and I'm new to this forum, and I need your advice on where to start:

Like so many of you that I read online here - I am a worrier by nature, and I had a terrible 2010 as far as stress goes. In October 2010, my issue started in full. My chief issue is frequency of urination and the constant feeling that I need to urinate (which is now 24/7). I had Cipro at first, which did help, but in mid-December, my symptoms came back and since then have not let up. I went to a Urologist and he diagnosed me with Prostatitis and said because there is no infection, I wouldn't benefit from more antibiotics, but the only thing to do, is change my diet (no tea, coffee, spicy foods, alcohol and chocolates), and to take sitz baths, and not sit so much (I'm a systems analyst, so sit at a computer all day). He also gave me a herbal supplement. (He did find blood in my urine once so performed a cystoscopy which revealed no issues, and also revealed a normal sized prostate - so no cancer and no enlarged prostate).

Since then, I have seen a Holistic Doctor, who has prescribed various tinctures and homoeopathic remedies ~ he claims it is mainly diet related and that over the years toxins from what I have eaten and lifestyle has ended up in the prostate and he is trying to flush out the prostate. He suggested I also get prostate massages to help remove any toxins. I'm not sure where to get such a thing. I'm also having acupuncture done and taking Chinese herbs. The acupuncturist says that my chi is blocked and that is why the homeopathics are not working because they are not able to get to where they need to go to help me. While I feel the acupuncture does help me with the stress side of my life, it is doing little for my condition.

I'm still not sure I have CPPS, as my primary condition is frequency and feeling like I need to go, however, I do get a burning sensation at times in my penis, and at times I get a heavy/pressure feeling in my groin area/testicles. Some days, I get these lower back spasms.

Does this mean I have CPPS? How do I go about finding a good pelvic floor PT to help me? (I just bought the book "Headache in the Pelvis", so was hoping to get some pointers there). I came across this forum and find I relate somewhat to others. I live in NJ and work in Manhattan NY. I heard of a place in Manhattan called Beyond Basics Physical Therapy, so have an initial consultation next week. I'm not sure if this is the right place to try, but the owner wrote a book called "Heal Pelvic Pain", and got good reviews, so I'm going to start there.

Even though I have only had this for 5 months, it came be quite an ordeal - it consumes my life. I have not been able to really enjoy my life as I constantly have to think about this issue. Then I read how people have this condition for years and that fills me with dread and fear - that this is what I have to look forward to. I don't want to go back to the urologist. Even though he said I don't have an infection, when I went back for the burning sensation, he prescribed sulphates, which are an antibiotic, after he told me antibiotics will not help me as I don't have an infection.

Any ideas/suggestions or advise would be greatly appreciated. Note that I need to find someone that I can go through my insurance. The acupuncture and holistic approach is not covered so I have spent a small fortune on supplements, tinctures, holistic treatments, etc. The PT I'm going to is $200-$300/session and they are out of network, so will have to swallow the cost, until I meed my deductible, which is high.

[webslave]

Beyond Basics has some good reports here, do a search. Eg viewtopic.php?p=41143#p41143

Computer workers — programmers and systems analysts — often have problems with pelvic pain because of the many hours of tense sitting brought about by high concentration. Yes, you do have the early symptoms of CPPS.

The most radical thing you could do to stop it is change occupations. Failing that, learn to consciously relax your pelvis at all times, which is reasonably difficult for many men to do.

[Todd]

Hi Sean,
Welcome aboard. I'm 42 and have suffered with similar symptoms on and off for about 10 years. I'll often go a year or more without symptoms however I'm dealing with a flare-up which started a few weeks ago (likely from the stress of deciding if I should accept a job offer- one that has less hours but is a desk job- which made me worry about symptoms and voilà - flare-up!). I stress very easily as well so I assume you have pelvic issues also. There's a ton of great advice on here and I'm sure this isn't something either of us will have to deal with for the rest of our lives. I find when I'm busy doing something I like I don't notice the symptoms. I REALLY notice them when I am reading Headache in the Pelvis!

[chewydog]

I've been having issues since July 04 of last year! It started the same and got worse then better, so just believe it will get better! I started on any accredited quercetin product and it took a while but things did get better. I stopped smoking, drinking, took, many herbs for well being, learned to relax, read the book Headache of the pelvis. Don't look on the net constantly, it can scare the sh-t out of you!!!

Today, I'm 80-90 percent better, but it took lots of work and learning a different lifestyle!!! I now have days and weeks where I feel normal!!! A few months back I never thought that was possible ever again!!

I also found a good PT who did internal treatment. Keep the faith!!!!

[netLynx]

Thanks for all the replies.

webslave, you wrote: "Yes, you do have the early symptoms of CPPS."

Does this mean, they get worse with time?

Not a good thought! I'm going to go to my appointment on Thursday at Beyond Basics, and hopefully will be able to explain to me, what exactly is chronic prostatitis / chronic pelvic pain syndrome and how I can benefit from PT. (This is the initial consult, so don't expect any treatment.)

Also, I ordered Quercetin. I heard some good things about this product.

Anyone have any ideas about more natural treatments, like Essential Oils and/or Acupuncture?

[Jay]

Hi there,

There's no guarantee that chronic prostatitis / chronic pelvic pain syndrome gets worse with time, but symptoms can be exacerbated without some kind of treatment protocol. The essential truth is that this is a condition you maintain, rather than cure, and so you'll have to be vigilant for life. However, that's different from suffering with the full array of symptoms forever, which is quite unlikely. It will come, it will go.

Good luck with your visit to Beyond Basics. They have a good reputation for our condition. If their therapy is anything like my PT's, you may actually have a bit of work done on your first visit, probably an external and internal exam to determine what your situation is. Nothing to be nervous about.

[netLynx]

I wanted to give feedback: I have had several treatments at Beyond Basics in NYC. They are very good therapists. I feel it does help but as my condition has very little pain (my main condition is frequent urination - up to 16 times a day and also the constant feeling that I need to urinate), I feel that the PT is not as effective for me as it could be for someone who experiences more pain.

I'm so bummed by my condition - on some days the feeling of the need to urinate is so extreme that I am going demented here. One of the therapists suggested I go to another Urologist and get another opinion. I did that and he didn't find any infection but suggested a *month* long course of Cipro 500mg and a month long course of Neproxan 500mg. His take is that even though you cannot detect any infection, that doesn't mean they are not present. Is this logic sound?

I don't want to take antibiotics if I don't have an infection. I have been also trying acupuncture and homeopathic remedies, but none have helped. Althogether, on some days I have less intensity, but overall no cure.

I have been on any accredited quercetin product from Quercetin suppliers and Prostate PMG (from Standard Process) for about a week now but so far, no light at the end of the tunnel. I am waiting for another product from Quercetin suppliers called [discontinued product] (which is more for the bladder where as any accredited quercetin product is more for the prostate).

Very confused at the moment. Nothing seems to make a dent in my condition. PT helps a bit, but only a small amount. Plus they are expensive and out of network and I now hear that my insurance will only allow up to 6 visits.

Anyone have any suggestions?

[webslave]

His take is that even though you cannot detect any infection, that doesn't mean they are not present. Is this logic sound?

No, it isn't.
See Dr Shoskes' tips for urologists here
http://ucpps.men/1/

Anyone have any suggestions?

You don't have CP/CPPS, but you do have a condition that has overlaps with CP/CPPS, and could represent the early stages of the condition. We have other members in a similar position, and some of them report good progress with breathing exercises, meditation and relaxation. I see that you have already posted in one of the relevant threads: viewtopic.php?f=37&t=7523

[robertpagen]

You have not commented on your diet modification. There are some excellent threads on this site about not widely known allergies.

[robertpagen]

My experience with Homeopathic remedies is that they are complete charlatanism. Total BS

If you've had IBS since your twenties then that tells you a lot.

[Burner2k]

Sean,
I do not have personal experience with this therapist but another member 'walla' (his username might be slightly different) who had the same issues as us, went to Marylin Freedman and was able to resolve his issues successfully. He doesn't post here no more, so probably have moved on with his symptom free life :) I think she is based out of Long Island, NY.

She is quite expensive from what I've heard and if you can afford, probably should visit her once. I am surprised folks at Beyond Basics have not been able to help you. I have read testimonials in Amy Stein's book about males having this condition successfully treated at her facility.

I too have given up liquor, very spicy food (I am Indian and cannot totally eliminate spice from my diet) and citrus stuff. Surprisingly chocolate does not affect me (even though I rarely eat it).

I too have had stomach issues since early twenties...gas problem mainly. No indigestion, no problem with bowel movement, no loss of weight etc.

I probably will undergo a MRI to make sure there is nothing in my lower back which has been contributing to my issue. One of my neurologist thinks it might be. I had sciatic nerve inflammation in 2009 which was resolved in 2 days with use of Flexeril. The inflammation was due to doing stretching improperly on a hard wood floor while laying on my back which might have done something to my spinal disc. Just a speculation.

Anyway, good luck to us all.
Regards,
-Burner

[netLynx]

I'm not suggesting that Beyond Basics has not helped. Just that it has not helped enough to minimize my frequent urination and urge to urinate issues. They have reported that I have very tight hip flexors and are giving me PT to help that along, however, what is so confusing is that some people say I have chronic prostatitis / chronic pelvic pain syndrome or Prostatitis and others not. Also, when I see a urologist, all I get is the standard Cipro prescription. But they don't find any infection, so why the antibiotics.

So what is the answer? Stretching and diet restrictions and deep breathing and homeopathics and acupuncture all seem to not help, or help very little. I'm now trying any accredited quercetin product as well as their new product - [discontinued product](by Quercetin suppliers) and hope this helps a bit.

It is just very confusing as well as very depressing. This sure has impacted my life in a huge way. Not sure what else to try next.

[samgg10]

So what is the answer? Stretching and diet restrictions and deep breathing and homeopathics and acupuncture all seem to not help, or help very little.

Nothing will help you today, or by tomorrow, or by next week. That's why this is so hard. That's why new sufferers (and many unfortunate regulars) go looking for more and more obscure pills, treatments, therapies; sources they'd never dream of consulting for the treatment of better-known ailments. This 'what do I try next' desperation is a phase. The earlier it ends, the sooner you'll be healing.

There's a protocol here that works: Dr. Wise's. It's a long-term & mentally challenging commitment. You may not see results for weeks or months, and it can take a year or two before you completely recover (though there are tons and tons of documented success stories; I myself am almost/approximately/three-quarters one of them). The more recently you've developed CPPS, generally, the faster you will heal. Plenty of new sufferers reject this solution, or say 'fine, but...' and dig around anxiously for alternative panaceas which do not exist but are sometimes promised (e.g. for profit). Don't.

If any of this sounds like dogma, well, it is. There are significant downsides to rejecting Wise (and if you venture down that path, this forum may not be incredibly useful for you). But many of us do modify the protocol successfully or discover complementary treatments. On this site you'll encounter these kinds of tips & suggestions from fellow sufferers who are also following the Wise protocol; some of these may help you (though none will rock your world or do your mental work for you).

Best advice: If you have CPPS/Prostatitis/etc., go in for the Wise protocol. If you'd just trust that, it'd save you a world of headache.

[netLynx]

I am following the Wise method - going for PT has helped. I guess I'm not used to something taking so long to resolve itself.
I have no choice but to plod ahead and try and educate myself as best I can.

[latte]

Netlynx, don't worry so much. I know its hard not to obsess about your condition because I obsessed for quite awhile in the beginning. It does get better if you apply the principles listed on the website and in Dr. Wise's book. I did Dr. Wise's program in Sebastopol and it did help me. You don't have to attend his program to use the guidelines outlined in his book. I did PT with a very good therapist in CA years ago and recently went back for a tune up. She said a lot of the trigger points I had then are gone but a few new ones popped up. One key I found it that you have to apply relaxation techniques along with the PT. Dr. Wise told me that if you just do the PT it won't work nearly as well without the relaxation. Buy a couple relaxation tapes of ocean sounds or whatever you like and put your headphones on at least 40 minutes per day. You will be amazed as how much better you will feel. This condition tricks you into a constant state of anxiety. That makes it worse.