My story 6 months in - input appreciated

[webslave]

Well, overuse of steroids on facial skin can cause a rebound inflammation called steroid rosacea. How many tubes of steroid cream have you used on the penis, and for how long?

[da0092]

I've used about 1.25 tubes over a period of about 7 months. There have been long periods in that time when I haven't used it. It definitely isn't the root cause of my pain and inflammation, my main symptoms really haven't changed over the 10 months regardless of whether I was using the steroid cream or not. I was using it as I thought it was maybe providing some temporary relief to the inflammation, but now concerned it is causing my penis glans to become very dry and irritated, and even further inflamed.

[webslave]

So as that page on genital dysaesthesia states, overactive nerves are the root cause of this. Steroid creams can actually make it worse, so stop using them.

That's actually a pretty good page on the condition, and I agree with them that gabapentin or pregabalin could be very helpful.

[da0092]

Thanks webslave, good to hear that everything adds up.

Unfortunately as I'm a pilot, I'm unable to take any centrally acting medication such as gabapentin or pregabalin, without losing my flying license and therefore almost certainly my career.

Is there still a good chance of the nerves repairing themselves with time in the absence of such medications? I see the page also recommends doxycycline due to its anti-inflammatory properties, what would your take be on that?

Still continuing with all of the internal massage and mindfulness and Quercetin, assuming they should still all help settle the nerves?

Thanks

[da0092]

Just to reconfirm, I have periods where I have absolutely no symptoms, which I guess means my misfiring nerves still have the ability to 'switch off'? I'm hoping this is a good thing and that as time goes on, my nerves will 'switch off' for increasing times and 'switch on' for decreasing times?

[webslave]

Yes, on all counts. Pilot eh ... not the first one I have met who has CPPS and its variants. Tense sitting is part of a pilot's job, so pay attention to your pelvic tonus state when on the job. Using doxy as an anti-inflammatory is something you could try, but be aware not all people react the same way to doxy.

[da0092]

I've had a rough few days, earlier today I finished urinating and noticed a clear jelly like substance with little clumps coming out of my urethra. I've never had discharge before. I haven't masturbated or even had an erection today so not sure it could be semen. I've self tested with a urine sample which came back clear. Any ideas what this discharge could be? Not sure whether it's significant that it's coinciding with some rough days...

[webslave]

Discharge is prostatic fluid, normal, lumps are called corpora amylacea, insignificant

[da0092]

Thanks webslave, what causes the discharge?

[webslave]

Can occur for no reason, or if the gland is congested, which is a possibility with CPPS

[da0092]

thanks for explaining

[gran torino]

Hi da0092,

Apart from "standard package" of symptoms located inside my body, I'm facing also an inflammation of the penis head, foreskin and scrotum. It includes redness, tenderness, dryness and sensitivity to touch and any type of soaps, body lotions etc. Most of the time it is bearable but after heaving sex without a condom, an increased inflammation occurs sometimes together with local candidiasis, which disappears on its own after a few days. Both me and my wife have no signs of bacterial or yeast infection verified several times by different labs and doctors.

Therefore I believe that persistent inflammation weakens the skin down there and makes it more vulnerable to some conditions, which normally would not happen.

When CPPS hit me 3 years ago, I took a lot of creams which consisted of antibiotic and steroid as well. It lasted over a year or year and a half maybe - it was the time when my doctors were treating infection, which of course was not there. For sure that hasn't brought good results.

I read about genital dysaesthesia some time ago and it describes perfectly all the symptoms I have. I'm trying to implement some of the treatment suggestions into my daily regimen. I will report my observations, if I notice any changes.

[da0092]

Thanks for your input gran torino,

Did all of your symptoms come on at the same time, or did your penis issues occur before/after what you describe as the standard package of symptoms inside the body? Would you say that your penile inflammation has changed over time, or has it always been at the level you describe - bearable most of the time but further inflamed after sex without a condom?

What treatment suggestions regarding genital dysaesthesia are you trying? Would be really interested to hear how you get on :) at the minute I'm sticking with all the standard CPPS treatments, including: internal PT; stretching; yoga; relaxation + mindfulness; Quercetin. I think the thing that makes the biggest difference for me is internal PT. The penile inflammation is almost always there to some degree, I think more than it was before although I'm definitely overanalysing where as before all this started I never really wondered about it, but when it's bad it looks very inflamed and red and angry, and is really painful.

Stress and sitting on hard seats definitely make my symptoms worse, but they can still appear when I avoid all of the triggers. As mentioned in my previous posts, I have absolutely none of the 'standard' CPPS internal symptoms! Penis tip pain + inflammation only.

[gran torino]

Most of my symptoms gradually developed during first months after it all started around 3 years ago. At the beginning I ignored them and I took pills (abx mostly) prescribed by my urologist.

Full-blown disease pushed me to seek for alternative treatments and then the situation improved. My daily regimen is pretty similar to yours, apart from internal PT, which I do by myself.

My penis issues started with strong inflammation on the penis head and meatus. Later it expanded into the foreskin and scrotum but also became a little weaker - there is no pain normally but when I touch somewhere in the area, it hurts. It looks like blood pressure is increased there, veins are more visible, broken and much darker than before. The whole area is much more sensitive to touch, but the feeling is pretty much the same as what I feel on my legs skin when I wear tight trousers (hyperalgesia, allodynia).

Stress and sitting make my life really hard and buttocks and legs pain can be a nightmare when I drive my car a little longer. It also affect how I pee negatively - the stream is weak and thin, so to say.

What I would like to test is small doses of hydroxyzinum (hydroxyzine) during next few weeks. Depending on the results I will consider gabapentin as a next step.

I will keep you updated.

[da0092]

I've started experiencing rectal pain. I first felt a pressure type pain after a bowel movement a few days ago, and it's come and gone since then. My PT also says that my perineum feels very inflamed, although I'm not getting any pain from it.

I hope this is only temporary and isn't a sign of my symptoms progressively spreading I still have the penis tip pain/inflammation, which is definitely my primary symptom. Any advice?