Typical CPPS...or something else?

[pundl]

Hi!

I'm a 43 year man from Austria suffering now for 1.5 years and still have no diagnosis and no idea what could help me either. This forum is great because I got a lot of information from here. I try to make it short (excuse my English, my first language is German):

Without any special reason I got very slowly - over a period of weeks - symptoms which increased over the time. They can vary in intensity and also in location. The main problem is pain: in the morning I'm quite fine, but after 15 minutes of sitting the pain starts, after 2 hours I can't sit anymore. I've to walk around or even better lay down. With prostate cushions the time is longer, but at lunchtime I've to lay down for 30 minutes. The pain location is in the perineum, more often on the left side, but it can be also on both sides, the pain is also in the penis head and around the anus. No pain during ejaculation, but more pain hours after for the next two days. Almost no problems with urinate, but when the bladder is quite full, the pain ist worse. When the pain is worse, the meatus is quite red, but no burning during urination.

The Uro's don't know what I've. In the ejaculate we always found (culture and PCR and NGS) a very low amount of Enterococcus faecalis, the prostate shows some calcifications, the MRI showed signs of a chronic prostatitis. Uroflow: normal. I was at a very special physiotherapist, an expert for CPPS, the only one in my country: no trigger points, no tension. I was at a chiropractic, did stretching every evening for months, tried shock wave therapy (was too hurtful - couldn't sit for two days at all). I took several herbs, quercetin, 2 autovaccination, Allicin (helped a bit), Amitryptilin for 3 weeks (a bit short I know, but I was quite tired with this). I only took 1 week antibiotics because of side effects. I even don't think that this could help me. The only thing that helps: laying down, sleeping, hot baths, hiking.

Before this problem began I was quite healthy (years ago I had IBS but in the last years no problem - but there exists a connection with CPPS) , my life is healthy, I'm a physician (after 1.5 years I know a lot about this, I read a lot about an illness never know before but can't find a solution for myself), happily married, one son.

So my question: What do you think? Is this a CPPS or chronic prostatitis? Is this a problem with nerve compression?

[ChgoGuy]

I think you have CPPS / Chronic Prostatitis.

[webslave]

1. Nerve compression is rare as a male, unless you have had a history of trauma to the area e.g. vehicle accident, heavy fall etc. Also your symptoms do not fit. They sound pretty typical for CPPS/IC.
2. Pain with bladder filling suggests the Painful Bladder Syndrome (IC) variant
3. Go on an IC Diet. Consider excluding gluten as well.
4. You could try Elmiron, Botox instillations, TENS units and a lot of treatments used for IC/PBS
5. Who is Germany's physiotherapist CPPS expert?

[rjdemarx]

Hi!
The only thing that helps: laying down, sleeping, hot baths, hiking.

These are the same activities that help me. Hiking is fantastic.

[pundl]

Thank's for your answers!
Webslave - some questions to your points:

1. : Nerve compression: I don't remember any trauma but as you know there are these Nantes criteria of pudendal neuralgia. When I look at them I fulfill a lot of them. Sure - these criteria are also fulfilled with other diseases like CPPS or prostatitis. But what I want to point out is that my symptoms get better when there is less compression (laying down, using a prostate cushion). So nerve compression might be a topic. Maybe it could also be a reduced circulation due to compression? This brings me to another question: could meds like Tadalafil in low dosage (e.g. 5mg/day) be a solution?

2+3.: I will definitely try IC diet - that's not so complicate. Gluten free is quite more a problem. I tried this for 2 weeks and gave up. I made a few test which showed no signs of a gluten intolerance or leaky gut (e.g. zonulin, sCD14 and the antibodies). As I read in this forum you were healed due to a gluten free diet. How long did it take as you felt an improvement and do you have to eat now completely gluten free or can you tolerate a little bit?

4.: TENS I tried without any effect. Elmiron and Botox: I don't think that the bladder is my problem. Either it's a chronic prostatitis or it's a CPPS. But CPPS is in my opinion an umbrella term for different problems. In my opinion the CPPS is very often a tension problem. But maybe the tension is not the primary problem - more the consequence of pain. But I don't know this. But CPPS could also be a pain syndrome like a CRPS. Because of some reason there is a malfunction in the nerves/spinal cord. Because of this malfunction nerves create an inflammation. This would also explain the red penis tip in my case.

5.: Germany is a big country - but I'am from Austria which is a small country. In Austria Mrs. Judith Harpf works at the hospital in Klagenfurt and is the only PT who treats only men with this problems. She is very experienced. There a some PT's - even next to me - who treat only women. There a more PT who treat women than men. Strangely here in the forum a not many women. They have CPPS too - were are they? Unfortunately Klagenfurt is too far away for me for regular visits. But if someone know's a good PT in south Germany (Munich area) or east Switzerland (Zurich area) I would be very glad.

Best wishes!

[webslave]

1. Doubt it. Doctors are not even sure that pudendal nerve compression exists. A 2015 paper from the University of Texas, a study of 13 normal female cadavers, found that the pudendal nerve is routinely “entrapped”, to the point where the authors suggest that there is no such thing as pudendal nerve entrapment, and that attachments (“entrapments”) are normal. So unless you had a big impact or injury there, forget it. More here https://ucpps.men/pude ... pment-pne/
   
   
2. Tadalafil (Cialis) you can try, some men find it useful. Harmless to try
   
   
3. You don't have to be celiac to be harmed by gluten. Google "non-celiac gluten sensitivity". I never ever eat gluten (but I may be celiac, don't know, not willing to re-try gluten to find out). Takes months to feel the full healing effect of excluding gluten. It's worth a full trial, in my opinion. Two months at least.
   
   
4. You get pain with bladder filling, which is very suggestive of Interstitial Cystitis. Have you had a cystoscopy? Hunners ulcers? Potassium sensitivity test?
   
   
5. Never heard of Judith Harpf before. Thanks for the name.

[NeoKortex88]

hi pundl

I am from Regensburg which is close to Munich and I did visit the physio that is located in the same building as the pelvic pain center of Munich. They did show me stretches (not the same as in hitp) and after me asking for it my physio did internal work which I am not quite sure if it helped. She said my pelvic was tensed but couldn't find any trigger points. But I have to mention that my pelvic seemed to seemingly relax after the treatment. I am going on vacation next week and will be back to my physio on 6th of November maybe for more internal. I keep u updated.

Was Judith Harpf any good? Did she do internal? I am basically looking for a physio to show me how to self-treat my trigger points but those kind of physios don't seem to exist in our area.

[pundl]

Hi guy's!

Thank's for your answers!

Webslave, I did not do a cystoscopy until now because of fear. I believe in this pain syndrome theory and I suspect that after interventions like a cystoscopy pain would become worse. I discussed it with 3 uro's, 2 said a cystoscopy is not necessary. One said there is a minimal risk that a tumor is in the bladder. It should be done because everything else was already done. In December I see another uro (I think it is the last one) in Basel, Switzerland. He was recommend to me by my uro in my hometown. This uro has a reputation in solving unclear cases and works with alternative methods. I will ask him too about the cystoskopy.

@neocortex: You mention the pelvic pain center Munich. Is this the same as the Beckenboden Zentrum (https://www.bbzmuenchen.de/)? Where you there? What was your feeling - are they good? Concerning Mrs. Harpf I can tell you that she also educates other PT's in this and other topics like incontinence etc. I had an appointment with her and she made an internal (and external) examination which took about 60 minutes. The internal examination was quite rough. As a physician I do sometimes rectal examinations but I would never dare to press that hard. But actually she did it right. She looked very accurate for trigger points but could not find any. After that examination I could feel a slight feeling of pain in my pelvic floor and my rectum for 2-3 days. Weeks later I was at another PT (near my hometown) who claimed she has experience with pelvic floor problems. This time the internal examination lasted maybe 5 minutes. In my opinion she had no idea of that all. She told me to do Kegel's (which made it worse), than she did electrotherapy with an anal tube which made it worse too.

I made the experience with this disease that it's hard to find someone who knows what to do. If I would have done all the advices I was told, I would have taken antibiotics for months and ruined my health. I think it's better to restrain and be careful what you do and what you take.

[NeoKortex88]

Hey yes exactly that was it. Well I guess competent since the 12 doctors I did visit before had 0 clue and they said right away: yes, pelvic floor, muscle problem and referred me to said Physio.

The Physio was hesitant about doing internal and didn’t find any trigger points meanwhile I believe Tim Sawyer would find a dozen. Still my tightness greatly reduced after the internal so I am not quite sure.

The Physio did show me how to use a tennis ball, some complement stretches to A Headache in the Pelvis etc.. I will go back for 6 more meetings in a week from now and update you. If it’s just for the stretches and the tennis ball I can maybe make a video of it and upload it or something for you and others to have.

At the current state I don’t think its worth for you to go there unless in my next meetings they show me the best internal work ever.

[pundl]

Hi!

Meanwhile, I had the appointment with the special Uro in Switzerland. He said there are many reasons for pelvic pain. Most of his clients have a problem with tension. In my case he believes that this could be the reason, but it could also be a problem with the iliosacral joint. He told me I should check the hormones and recommended neural therapy to relax the pelvic foor (but he didn't do a examination). No need for cystoscopie, the Enterococcus is not the problem. Buy the way, he said he has a chronic prostatitis himself for years and does several therapies - with no definitive sucess. He couldn't explain the redness on my penis tip. I told him this theory about neuro inflammation - but that he didn't knew.

This was my 4th Uro. After 1.5 years I still don't have a diagnosis and still don't know what to do. I realy would like to visit regulary a PT with internal therapy - but near my hometown we don't have one. The car drive to the swiss Uro (6 hours in total) made things really worse, still suffering from that. Sitting is my biggest problem. But one thing is now clear for me - I won't go to another Uro. No one of the 4 Uro's had an idea what I have. All examinations didn't show anything (besides the Enterococcus and some small stones in the prostate). I have to go new ways.

[pundl]

The last weeks were quite bad - in a way I lost my hope. I mean I have these problems now almost 2 years and there is no end. When I look back, I have to be honest and must say things are getting worse. In the first month's I sometimes had a "good day". Now every day is the same - the pain is there every day. My wife says I shouldn't think all the time about it, but that's not easy. Another thing worries me: the red tip. In the first year, my penis and the meatus were absolutely normal. The red tip developed in the last month's. It's red, it's a bit swollen and it burns (but not on the toilet) - to make it short - it's inflamed. The reason for that - I don't know. It could be neuroinflammation, but it also could be something else. I even think on Mb. Reiter - but I have no signs of inflammation in the blood and no joint problems. As far as I read in this forum, not so many men with CPPS have a red tip. Before I became ill, I used to wear tight jeans. That's not possible anymore. I don't tolerate pressure on my penis tip. We had no sex for 1 year now...

What do you think about this red tip? Is this typical CPPS? Should I try Gabapentin or something local like Lidocaine? Something else?

[aazzone]

Would strongly recommend meditation. So far its the only thing that has consistently helped me in keeping some mind balance. After a bit of practice you will be able to get some calm, in the same way as when you have a good time you feel a lot less (or no) pain.

I have had this for a few months and I am convinced there is a strong psychological component.

Have a go, its healthy and free. Try Headspace app.

Also some CBT therapy I believe would help (will start mine next week)

[WS1234]

The red tip is a fairly common symptom. I have it. Wish I had a good recommendation on easing the symptoms but I haven't had much luck so far. If you can't get access to PT, try the stretching routine outlined in Headache in the Pelvis or similar books and mix in some meditation and psychological work. Susie Gronski also has a DIY course that has some pretty good content and instruction that might be worth trying. Google her and arrange a phone consult. She's a good resource in my opinion.

[pundl]

I have a question for those who are familiar with pelvic floor massage and trigger points.

Over the last weeks I did some self treatment with the TheraWand. On a certain spot I always feel pain. It's always the same spot on the left side. I asked my wife to do the same treatment with her finger. When she presses the spot I feel pain - but not extreme pain and also no radiation. She say's she feel's under the mucous membrane on this spot something like a muscle strand, not a spot. For her it's at 2 o'clock - for me on the left side. On the right side there is nothing like that. Is this a trigger point int the M. puborectalis? Are trigger points "points" or can they also be strands or cords? Shouldn't a trigger point radiate when you press on it?

I'm still looking for a PT with internal massage, meanwhile I'am at an osteopath (again) - but he's better than the first one. My pelvis is distorted so he tries to fix that. He also found something deep in the abdomen on the bladder. When he pushes on certain spots it radiates to my penis.

[webslave]

Not all trigger points radiate. Some do, some don't. They can feel like hard lumps or cords.