Odd glans penis pain/ CPPS? (Alphalifestyle)

[kovacs]

My main symptom is really inflammation in my bladder and urethra and a inflamed feeling in the anus, pelvic region and legs, probably caused by the cystitis...

After a lot of physical therapy I eventually got rid of most of my "regular" pelvic pain symptoms this summer (it took two years). But only weeks after those were relieved, my current symptoms became much stronger - and they sound very similar to yours. Mine are bladder pain/cramps, urethral/prostate pain, rectal cramps, pain in upper (inner) thighs. My pain is relieve through urination. Urination can be very difficult and often unsuccessful so I need to self-catheterize. This can be problematic due to the tenderness in the urethra, but I find that I am getting more experienced and getting less pain after self-cathing.

I am going in for my first real checkup on Monday, so I'll hopefully get a cystoscopy and any other tests to check for bladder problems.

I take Betmiga for the bladder cramps (seems to have helped a lot) and Omnic (Flomax) for the prostate (not sure if it has any effect).

My current diagnosis is Painful Bladder Syndrome.

[Alphalifestyle]

First, thanks everybody for the kind words and support. It is really appreciated. Thanks guys!

CPPS can encompass pain and inflammation in bladder, prostate, urethra, even testicles. In the bladder it is called Interstitial Cystitis.

Yes, take the antibiotic, but I doubt you have a bladder infection (you've had the condition for 10 years, more or less). But don't allow the medics to give you any further antibiotics after this.

The cystoscopy has proved there is no stricture, which makes a chronic prostatitis / chronic pelvic pain syndrome diagnosis more likely (although the absence of pain is a contraindication, or to what extent do you have pain? Your sig does not mention it)

Come back after the antibiotic and we can look at the situation again.

Hey webslave, I do have pain. Its a kind of moderate burning pain, like a "inflammation kind of pain". I feel that pain in my urethra, bladder area and anus. Also sometimes in my right leg down to the foot. I can tolerate it, so I don't need pain medication.

I took the antibiotics for 2 month now without any success or change in symptoms. Sex is still the worst and post sex symptoms are excruciating. The constant feeling of inflammation makes it hard to concentrate on anything.

So I just went to my doctors office to get an earlier appointment and it is in 2 hours! I originally planned to post here before I go the doctor next time to get some help for asking for specific medication or treatment options. I really would like to try some kind of anti-inflammation medication to maybe somehow break the circle of inflammation and/or some muscle relaxant. I feel like the antibiotic road has being exhausted by now. So the next step should be finding some way to break the inflammation circle of uncertain origin, right?

[webslave]

Pain down leg to foot suggests a spinal problem (MRI to check would be good).

Probably best to stop seeing family docs/GPs and uros, at this stage. No more antibiotics, period. You're better off initially with a spinal expert for a checkup (orthopaedic surgeon), and if that is all negative, go to an internal trigger point expert (not sure if you have done this already, your signature does not give details and I cannot re-read thread).

[European]

I also think that antibiotics are useless in your case. The overall picture of inflammation burning pain and the worsening after sex (which I know very well) points toward classic myoneuropathic background - muscles, nerve, tendons and ligament play altogether in this havoc...
Try to relax, try to regularly do some PT and maybe some medication for calming the nerves might be useful (Elavil, Atarax, Neurontin). I know how you feel, this burning neuropathic pain lasting entire days is very familiar for me.

[Alphalifestyle]

Pain down leg to foot suggests a spinal problem (MRI to check would be good).

Probably best to stop seeing family docs/GPs and uros, at this stage. No more antibiotics, period. You're better off initially with a spinal expert for a checkup (orthopaedic surgeon), and if that is all negative, go to an internal trigger point expert (not sure if you have done this already, your signature does not give details and I cannot re-read thread).

No, I had two spinal MRIs in the past, I have no problems there. It is some kind of symptom of the CPPS, because it only comes after ejaculation. Its not pain I have regularly.

I would like to go to a trigger point expert, but we don't have them in Germany and I cannot afford to see anybody abroad regularly. I only once went to this female therapist in the Netherlands, but she was useless, she told me I don't have much tension in the pelvic floor, also I have pain at 12 o clock and she told me that should be more of an organ (bladder, prostate) related problem, not muscular. Anyway that contradicts my own experience, because 1) the few episodes of having an almost normal penis, normal erections, no pain, etc. always came after either dedicated stretching, massage or Qi Gong&Meditation 2)if I examine myself internally, I feel that my whole anal sphincter feels VERY painful to touch with many very tender spots and also if I press at 6 o'clock over the anal sphincter I can feels some very uncomfortable tightness. Also there are spots MUCH higher up, which I can only reach with a long tool, where its also EXTREMELY painful apply pressure. But I don't understand the anatomy good enough and I don't want to mess around with that without guidance.

The most tender and painful muscle I can find by far is the anal sphincter so.

PT-wise I only see two options right now and both are expensive and I could not afford them at the moment:

1. There is a clinic in Cologne which does a week-long modified "Wise Anderson Protocol" therapy: modified "Wise Anderson Protocol" http://www.ebzkoeln.de/pages/en/disease ... m-CPPS.php (German version of the page is much more detailed)
2. Go to for example UK for a week and work with a good PT for several days with focus on teaching me how to self-treat.

What I do right now and what gives me total pain relief is exercising every day counter-intuitively. I go to the gym in the morning and do 45 min. of training, I stretch once or twice a day (routine of like 15 stretches for legs, hips, abdomen), jogging in the evening.

Avoid all kind of sexual stimulation also helps to keep symptoms at a tolerable level.

I was thinking of finally integrating a form of relaxation (vipassana meditation or yoga nidra) every evening to calm the nervous system.

---------

That being said my urologist did detect an inflamed bladder and urethra and it was not healed by antibiotics. So I still would love to find a way to fight that inflammation, because I think my sexual problems are mainly due to the inflammation.

My current symptoms:

1. Anus feels uncomfortable, burning, tight.
2. My penis lacks the pleasurable feeling on the skin, its like touching my arm. I feel touch, but it feels neutral. My glans feel almost numb. (but twice I could get the old feeling back, mainly by massaging my inner tights and my abdomen, can not recreate it, but that makes me believe it is not permanent). I think this is my scariest symptom. This came after what felt like a never-ending session of "edging" or prolonged masturbation. Probably I made an already tense pelvic floor much worse by that and fucked up some muscles related to the penis.
3. Also the dreaded "hard flaccid" look with very prominent veins on the shaft. (I think this is just caused by pelvic floor tension and lack of blood flow, nothing to worry about)
4. Still have burning urination, frequent urination, urgent urination.
5. If I have sex I experience severe PE and pain with ejaculation (also from a tense pelvic floor I think, because I feel the pain behind the penis), even erections can feel uncomfortable and slightly painful.
6. Stool is difficult to pass the area just feels so tight.
7. Stomach feels bloated.
8. Slight allodynia, but feels more like sensitive, not really pain around the hip.

------

Still feeling stuck. I don't make any real progress so, I cannot find any doctor that is interested in my condition or takes it serious.

I feel like I am stuck with optimizing my lifestyle, getting more serious with stretching & relaxation until I am able to earn much more money (which is hard because I have problems concentrating because of my problems).

I have a very understanding girlfriend that supports me, but I feel really sorry for her, because I don't really want to have any sex. Sex is just uncomfortable and painful for me.

90% of the time I accept now, that I have a very frustrating, but not dangerous condition. Basically a chronic cramp / tension of the pelvic floor and related muscles, which creates inflammation and dysfunction in my urogenital organs and pain and discomfort in related tissue.
This was probably caused by a unhealthy lifestyle of way too much sitting, too much computer, too much and extreme masturbation and porn abuse, tension and anxiety.

Every now and than I still catastrophizing and feel like I have Lyme disease, pudendal neuralgia or somehow permanently damaged my penis.

[Alphalifestyle]

I also think that antibiotics are useless in your case. The overall picture of inflammation burning pain and the worsening after sex (which I know very well) points toward classic myoneuropathic background - muscles, nerve, tendons and ligament play altogether in this havoc...
Try to relax, try to regularly do some PT and maybe some medication for calming the nerves might be useful (Elavil, Atarax, Neurontin). I know how you feel, this burning neuropathic pain lasting entire days is very familiar for me.

This might be a stupid question, but if I would like to try medication like this, which doctor should I ask for it? My GP or my urologist? :D Could you elaborate a little on how those medication work, I never took any kind of medication for this and my doctors never gave me anything other than Antibotics which did not do anything.

When you say "classic myoneuropathic background" that would still be the standard chronic prostatitis / chronic pelvic pain syndrome diagnosis, right?

[European]

90% of the time I accept now, that I have a very frustrating, but not dangerous condition. Basically a chronic cramp / tension of the pelvic floor and related muscles, which creates inflammation and dysfunction in my urogenital organs and pain and discomfort in related tissue. This was probably caused by a unhealthy lifestyle of way too much sitting, too much computer, too much and extreme masturbation and porn abuse, tension and anxiety.

This is exact description what is going on, I have very similar condition and this points toward classic case of pelvic myoneuropathy (=standard CPPS).

My symptoms are very similar, having flare-ups lasting a week or two interchanging with 4-6 weeks of relief (not complete but at least tolerable discomfort in penis and pelvis generally). The way I got it is very similar to yours.

[Alphalifestyle]

European, I was trying to write you a PM, but seems to be disabled!? [moderator comment, yes it is, see viewtopic.php?f=37&t=6447 ]

Are you also from Europe? I feel like my biggest problem is getting adequate professional help. It's like Germany is behind the moon when it comes to this disorder! Urologists most of the time have a paternalizing attitude of "You think too much, you should not concentrate on your body all the time", yadda yadda yadda and just refuse to be open minded. If I mention the diagnosis chronic prostatitis / chronic pelvic pain syndrome or ask if we could try some medications for muscle relaxation, anti-inflammation, etc they do not cooperate. Very frustrating, because I would like to at least try out some medications like Hydroxyzine/Atarax, Amitriptyline/Elavil, or Diclofenac + Orphenadrin Infusion.

Do you think I should just talk to my more open minded GP about it and try to get help from him?

Finding a qualified PT in Germany is also very difficult/impossible, and I don't have the resources to travel abroad for Triggerpoint Therapy.

I think it was you who mentioned somewhere that the worst triggerpoints are Trigger points in the bulbocavernosus and ischiocavernosus area and could be hard to reach, because they are "very difficult to treat, especially those in proximal part of ischiocavernosus muscle, the area is very delicate and prone to chronic problems, adductors are often playing also significant role".

As we share a pretty similar condition with similar symptoms like pain during&after ejaculation, could you try to explain how you treat those difficult to reach triggerpoints?

I am never symptom-free, but if I avoid all kind of sexual stimulation other than sex like once-twice a month, and live a very healthy lifestyle with LOTS of exercise, healthy sleep pattern and not too much computer/sitting, I can live with my symptoms. I am still hoping to find some method so to see me consistently improve! Right now I its more like my symptoms get worse slightly every year unfortunately.

[webslave]

Germany IS behind, mainly because, in my opinion, Bayer (manufacturer of ciprofloxacin aka Cipro etc) pays the top German researching uros to propagandize in favour of infectious causes of CP/CPPS.

You may find a decent therapist if you look at the German prostatitis forum medizin-forum.de/phpbb/viewforum.php?f=9&partner=prostatitis ... but be warned, they are still pretty obsessed by bacteria there.

Tell them you were sent from this forum.

[European]

Hallo Alphalifestyle, yes I am from Europe (Slovakia). I found two very good PT in Czech republic, I am going to one of them approximately once in a month, it is cca 1.5 hours driving from my town. He essentially helped me, especially trigger points in the levator ani, pubococcygeus etc. However I am not cured, regular flare-ups are bothering me and sometimes starting my catastrophizing thinking...what if...you know it.

Unfortunately each ejaculation deliver a flare-up for me, and that was the way it all started 6 years ago...Each time after ejaculation the vigorous pain at the penis base appeared, 24 hours or more later...and lasted a week or 10 days. In the beginning it was like having some kind of "lump" behind the penis, mainly on the right side..my dorsal penile vein became irritated and painful etc. But the origin of pain was clearly not in the penis but somewhere behind...I was always a heavy clencher and there was a lot of edging what seems to be detrimental in long term effect..

It took 2 years till the moment I came to the idea that I need PT and not urologist...Ischiocavernosu and bulbocavernosus are difficult to treat, I try to massage them from the external side, but this is not much efficient...I think Caedar reported some progress with his approach.

[carbonevo]

Hello European,
Can you please share a contact on those PT in Czech republic? I am from Slovakia as well and desperatelly been looking for Plevic Therapists in Slovakia but could not find any one.
Would appreciate your help really :)

[Alphalifestyle]

Hey guys,

this week I am going to see my GP and a urologist at the university again.

I am determined to try out some medication this time. The last cystoscopy revealed chronic inflammation in my urethra and bladder and I think this inflammation causes most of my pain and discomfort during sex and urination. As this is part of chronic prostatitis / chronic pelvic pain syndrome I am not going to accept another ABX prescription, as it obviously is not an infection.

So I would like to get some recommendations on what are the most safe and try out worthy medications to lower inflammation in the urogenital tract or help to lower chronic prostatitis / chronic pelvic pain syndrome symptoms in general. I am mainly thinking of stuff to lower inflammation, maybe help relax the clenched pelvic floor muscles and maybe help calm down the nervous system/HPA Axis.I am more hesitant to try any psychopharmaca. I really most of all want to get rid of the inflammation or at least lower it!

Would be nice if you recommend a medication I could try, that is available in Germany and also tell me if I better ask my GP or the urologist about it. Also maybe tell me really simply how it works, so that I have some convincing argument to ask my doctor for it.

Also do you think its worth asking for a prescription for physiotherapy maybe also TENS therapy? Professional pelvic floor therapists are not available here.

Thanks guy.

On a German board somebody mentioned his chronic prostatitis / chronic pelvic pain syndrome symptoms which where similar to mine got significantly better by weekly infusions of Diclofenac + Orphenadrin at his GPs office. Does that make sense? Should I ask for it?

[webslave]

I presume you have tried quercetin, which works for many men, including me when I had CPPS.

I see no harm in trying those infusions. It's not something I have seen discussed here before. Just be sure to read up on drug side effects before you start.

[European]

Hallo Carbonevo, I would not like to share the names directly (because of spamming robots), but the one doctor is under http://www.naprapathy.cz (Brno) and the other one is http://www.suchajehla.cz (Sumperk). Both are very knowledgeable and helped me a lot.

[Alphalifestyle]

I presume you have tried quercetin, which works for many men, including me when I had CPPS.

I see no harm in trying those infusions. It's not something I have seen discussed here before. Just be sure to read up on drug side effects before you start.

The Quercetin you guys promote here I cannot buy in Europe. Generic Quercetin supplements didn't do anything for me unfortunately!