My story...... Need help

[smackman]

I have asked multiple times for someone to recommend a Urologist Clinic that works with Patients who have CPPS or whatever the Heck I have. I have never been given a answer. Surely someone on this forum has went to a Urologist clinic in a 300 mile radius of my zip code which is 71260 and found help for their CPPS such as Dallas, Texas area.

This is the problem with living in a very rural area like I do. I still believe my biggest success so far has been the strict diet (The IC Diet).
This Penis pain and penis tip pain has taken a big toll on me. I now have severe Social Anxiety and also Just good ole Anxiety. I do not know which way to turn anymore. I am lost for answers.

Its obvious there is not "any one answer" to this debilitating chronic disorder. I feel for everyone who has to deal with this CPPS or whatever it is.

[webslave]

Why do you want to go to a urologist rather than a physical therapist?

If you really want to see a uro who specializes in this, go to Dr Ragi Doggweiler in Knoxville TN phone (865) 305-9254

[smackman]

I do not necessarily want to go to a Urologist but many times you have to have a Physicians to write you a order to go to a PT. I went to a PT in early 2014 and tried dry needling but I had to have a Doctors order before the Insurance would approve it.

Do you know of a PT close to where I live that specializes in CPPS? OR in The Greater Dallas area? I keep mentioning Dallas because I have a daughter who lives in Frisco,Texas a suburb of Dallas. If not Dallas, Where should I try and go? I believe I can get my Internal specialist to write the orders.

I would be EXTREMELY HAPPY to find a PT who specializes in working with Pelvic issues with a man that seems to have CPPS.

I have never had a Urologist say I have CPPS; most seem not to know much about it.

[webslave]

It will take you some time, but I suggest searching the forum for words like "Dallas" or "Fort Worth" and see what comes up. I know there are some recommendations in there....

[smackman]

It will take you some time, but I suggest searching the forum for words like "Dallas" or "Fort Worth" and see what comes up. I know there are some recommendations in there....

Thanks..... It just been really tough dealing with this issue. Matters were made worse as far as Anxiety goes when my PSA was 6.6 in July 2013 but in Nov.2012 it was 1.0.

Antibiotics brought my PSA down to 2 but it was just another "blow" of Anxiety. My PSA had never been high before. My understanding is CPPS will not cause your PSA to elevated so I have no idea where the infection came from......

I am struggling and desperately looking for answers. I have been to at least 6 different Urologist in the last 2 years 8 months and no one has ever mentioned CPPS as a possibility; Some said it was in my head........ Dead end answers get very discouraging.

[chatv]

Ask for Megan she is a Physical therapist at Baylor outpatient services in Irving Texas. Used her for 6 months almost ... significant improvement but not cured. She is very good and can guide you further.

[smackman]

Just a update about my condition; It is basically the same with Penis Tip Irritation being the MAJOR problem. I have had no luck locating a PT who specializes in CPPS Pelvic floor therapy. Nobody does internal PT with the pelvic muscles.

What I cannot "grasp" is how my penis tip irritation is referred pain; Here is why. I can put 4% Lidocaine on the tip of my penis and it will numb it. Sometimes I think I have nerve damage on my penis tip.

Also I have learned that CPPS can cause elevated PSA levels from inflammation from contracting muscles around the Prostate. I read this in a Harvard study but I have also learned that the Prostrate has MANY Urologist baffled on what to do besides giving antibiotics even though no infection is detected.

They say it is possible CPPS could be a "infection" that is not currently detectable. When my PSA shot up to 6.6, they found on infection in there testing but I was put on a 5 week dosage of Cipro 500 mg 2x a day. My PSA dropped to 2. There is so much that is not understood about the Prostate.

They need a more accurate way than a PSA test. It is not 100% effective and it will cause men to have high Anxiety when they are told they have a high PSA level. Most Urologist immediately want to do a biopsy which has become a money making machine.

I looked forward to the day they find a better test than the PSA test. My brother has a PSA of 5.5 but he has BPH but he was given a $4000 dollar 15 minute biopsy anyway.

Anyway, dealing with bad Anxiety and sometimes no hope that I will ever defeat this disease or whatever the heck it is. I hope one day I read where someone has found the magic answer to this debilitating disease/issue. It has sucked the life out of me.

[Mountainmac]

Hi Smackman,

I think I might have the same issue, (I'm circumsized) next to the raw sensitive feeling I have got a tingling (like low electrical current) feeling around the frenulum but not on the surface. It was very intense when my other CPPS symptoms were at their peak from onset in October to December. Now I only have the penile issues left. Do you also feel the need to void somewhere in the penisshaft/tip?

My Urologist says he has tested everything and there's nothing to fix so he can't treat further. It's all internal muscles according to him for which I am seeing a PT 2x a week since December. I trying to get an appointment with Prof. Waldinger in Holland, he has patients (Women and Men) with PSAS which seems like the 'ultra heavy' variant of my symptoms. You can also look into Paroxetine, but my internetsearch also revealed some distressing side effects, so do your research.

[Caedar]

Have either of you experienced greater tenderness, rawness, itchiness, or sensitivity from other parts of your body? I too have the raw and sensitive feeling, and I'm about convinced at this point it's 80%+ caused (in my case) by systemic hypersensitivity brought on by the CPPS, kind of a collateral damage.

[Mountainmac]

Hi Ceader, for me it's only in the toolbox. But for sure related to CPPS. Before that I didn't have these issues. The only remedy for me at this time is: time. Every week it's a little less than the week before. I think/hope related to muscle tension in the pelvis.

But thinking of it, I'm also very hyper to when someone touches me at the moment. Mostly the legs.

[smackman]

My 1st symptom was the penis tip being irritated. Then my penis would itch internally and this was at least a month after my 1st symptom which was irritation at the tip. The itching went away after approx. 1 month.
I have to wrap my penis to keep it from rubbing my underwear. Changing how I ate help tremendously.
This problem has been a nightmare for me. I will say I am 80% better than I was 2 years ago but I have not been able to resolve the penis tip irritation. I am circumsized.
The only other issue I have had in the last year was a high PSA of 6.6 but antibiotics brought it down to 2. It was a random PSA check.Before this My PSA was always below 1.5.
I have no other real issues except the tip irritation which gets worse in the afternoon hours.

[Mountainmac]

Well I had the meeting with Prof. Waldinger today, I suspect that he would state that there is no such thing as CPPS as a root cause when asked. It's all Pudendal Neuralgia/Neuropathy in his view, which might cause tight muscles etc (chicken and egg discussion I think). The irritation in the penis tip is just one of the forms in which a nerve can respond to minor damage as he states. Others may feel numbness (I would have preferred that). Most people recover over time if you let the PN recover, don't irritate it and focus on other stuff in your head. For me that seems to be no extreme positions of the left leg/hip. So no silver bullet solution.

I also went to see a neuropathic pain specialist, he works a lot with PeaPure supplement and skin creams. I tried Amytriptyiline 5% and Baclofen (β-parachlorophenyl GABA) cremes. The Baclofen seemed to work, so I will recieve a tube. Will arrive this week.

I had the same question about referred pain as you had. Asked him if it is possible to sedate referred pain to the penis tip. He said it is possible that pain gets referred due to the toxins a nerve generates when irritated. The toxins keep the irritation going because they trigger the receptors. These are then blocked by the painkiller.

[smackman]

So, you are using this Baclofen creme on your penis tip for Pain Relief? I would like to know how it works. I am struggling bad today with penis tip pain.
I have had so many different answers from 7 different Urologists.

I tried Elmiron for 18 months because one doctor thinks it is IC (Interstitial Cystitis). I was also prescribed Elavil. I still take 10 mg of Elavil at bedtime but stopped the Elmiron because I was not helping. I found this out by stopping it last July.

I do not know what I have but either the Urologist where I live are ignorant of CPPS because NONE say I have this. Some think its in my head; some think it nerve damage and some think its neuropathy.

One thing I do know: certain foods do trigger my problem like spicy foods, tomatoes etc....

I just want this penis tip pain to go away so bad. It is destroying my life.......

[Mountainmac]

Yes for pain relief, it does work, but doesn't give the 100% numbness/relief like lidocaine or the stuff they use for a cystoscopy. I don't know if I would recommend it at this time. It will take the edge off, but for me that's not enough. The penile pain/tingling MUST go.

The Dr. had the creams at the location to test them, I tested the Baclofen 5% and the Amitriptyline 5%. He said specifically that testing was the best way because they all target different receptors of the nerves. Amitriptyline he said targets more receptors, however the positive muscle tension effects of Baclofen can be very useful with CPPS (I also use it on the perineum).

Parallel I did try an over the counter anti-histamine with Cetrizine for 6 days (stopped now), so who knows what worked. It has been really remarkable the drop in penile pain over the last 3 weeks. Not gone but so much better. (I also stopped squeezing my penis to get the last drops out and stopped palpating it all the time to find out what hurts. So who knows, perhaps I was keeping it irritated myself?)

I still have internal TP's close to the sacrum which cause a lot of muscle tension in the surrounding muscles (also buttocks) and 1 in the perineum, I think they are key and that the extra relaxation I had because of less penile pain made it possible to relax these TP a little more. Perhaps just enough to end the pain cycle. (I also took 10mg Amytriptyline a day during the last weeks, stopped now).

Have you been checked for internal triggerpoints? Uro's can't do a lot, mine did the DRE and said that the muscle tension was way to high entering the rectum. That's CPPS he said, go to a Pelvic PT. (I went back to him a few weeks ago due to the persisting penile pain, he said there's nothing else to fix so continue PT).

If you don't have a PT locally already. You can try it yourself, buy some gloves, lube and poke around a little, press the muscles in the wall clockwise. Don't press the tailbone and prostate yourself. If you find a tight spot, press is for 30-45 secs and release. Do this 3x. There also external trigger point that may cause penile pain. If you find any, I would recommend finding a PT. It's worth it.

[smackman]

I use Lidocaine; I have 4% solution and a 5% cream. It only works for approx. 2 hours max.
I have ask this question before; What does one do to keep there penis tip from touching there underwear? That is a BIG issue for me. Do you wrap your penis or does anyone have any good ideas????