My Story

[WS1234]

Hi All,

32 year old male from/living in Canada. Have been suffering for 2. 5 years.

Symptoms:

• Biggest symptom is pain/irritation at the tip of my penis
• Penis is sensitive to friction but is constantly tender/tingling/irritated
• head of penis appears slightly red/inflamed at times - especially at the meatus
• Perennial area is also very tender/sore (although not debilitating like the pain at the tip)
• Urination is generally fine, although there is some dribble at the end and I have to wipe myself afterwards
• Ejaculation results in tenderness in the pelvic area and redness at the tip (but also provides some relief at the time)
• tingling and tightness in the pelvic area (hips, groin, abs ect)

I attribute the onset of symptoms to oral sex being performed on me by a sex worker - symptoms started days after this encounter. All the Drs I've seen disagree as they can't find any signs of infection or physical trauma. I've never had any problems in this area until now. Here are the details of what I've tried

Treatment to Date

• Urologist #1 - thought it was irritation, possible yeast. Prescribe a steroid/antifungal cream. No improvement. Then prescribed an Alphablock which also did nothing. Also did a cysto - was normal
• Urologist #2 - saw Dr. Nickel in Kingston, ON. Diagnosed me with CPPS after an examination and prescribed Elavil and another Alphablock. No improvement.
• Toronto Prostatitis Centre - this is a private clinic who combined Antibiotic Therapy and Prostate Massage along with diet modification and supplements. Also ordered a TRUS which came back normal (technician actually said I have a beautiful prostate). I had weekly treatments for 3 months but no real improvements. I know there has been some hate on this board for Ilia - I'm kind of torn about him and I understand the skepticism - he didn't help me either. However, I appreciated his willingness to do thorough testing and I wanted to rule out bacterial causes and between the testing and ABx, I have some peace of mind that this isn't a bacterial issue. Side note: my insurance covered his treatments 100% up to $10,000 annually which seems insane given that I only get $500 @ 80% coverage for physio/chiro/psychologist etc.
• Urologist #3 - told me it was in my head, suggested a Psychiatrist with experience in "Pain" and ordered a precautionary MRI. His bedside manner when he told me this was horrible, but I am going to explore this route to cross it off the list.
• Pelvic PT x 3 - I've worked with Laura Disenhaus, Jessica Nargi, and Carolyn Van Dyken. Unfortunately I did not experience any improvements. Would still recommend Jessica to people in the GTA though - she's full of good information and put in a lot of work with me.

Current Course of Action:

• working with a psychologist who specializes in chronic pain conditions
• trying to gradually increase my physical activity
• have improved my diet

Unfortunately, my symptoms are as bad as ever.

Other notes

• I've had chronic elbow pain for 4+ years (also unexplained and all imaging of my arms, neck, back show nothing wrong)
• I had hip and feet pain in the months leading up to the urethral stuff
• I am a regular user of Cannabis (have been for since age 21, I am now 32). I do not drink or smoke cigarettes. I don't notice any difference when I smoke Cannabis. I did try stopping for a few months but there was no improvement.
• I've lived a pretty cushy life up until this started so I can't point to a traumatic event that could have triggered this from my childhood or anything like that.

Interested to hear this boards take on my case.

[scotcan]

I have similar problems (Urethral pain/stinging, especially in the meatus). A while back I saw Carolyn Vandyken and she really helped me, so I would recommend her to anyone, unfortunately she's relocated to the Muskoka region.

My symptoms have subsided a bit, over the last 6 weeks or so. I've been doing lots of stretching, deep abdominal breathing, relaxing and lots of sitz baths. Not symptom free by any means but it's bearable right now.

[webslave]

I am a regular user of Cannabis (have been for since age 21, I am now 32). I do not drink or smoke cigarettes. I don't notice any difference when I smoke Cannabis. I did try stopping for a few months but there was no improvement.

For how long did you stop? Several men have reported cannabis as a bad actor in CPPS

[carbonevo]

-i've had chronic elbow pain for 4+ years (also unexplained and all imaging of my arms, neck, back show nothing wrong)
-I had hip and feet pain in the months leading up to the urethral stuff

WS, did those disappear after your got CPPS?

[WS1234]

Webslave - stopped for 3 months. Currently in the midst of weaning off again.
Carb - no, elbows are still horrible. Hip and feet pain come and go.

[WS1234]

@scotcan, I've worked (and am still working )with Carolyn as well. I agreed to be the subject of a course she was running for PTs in exchange for free treatment. She's definitely knowledgeable but I haven't noticed an impact from treatments.

[scotcan]

Hi WS, I didn't have these symptoms when I saw Carolyn and tried to see her this time but she relocated. How long have you been seeing her?

Long story short when I was a patient of hers, it took about 9 to 10 months of treatment for me to get to about 95% better. When I first went I couldn't do any physical exercise, but after about 4 or 5 months I had a gym membership and it all snowballed from there

Keep at it and I'm sure you'll get ther.

[WS1234]

Quick update, and also a response to scotcan's question (sorry - missed it)

So I was put into contact with Carolyn after treatment with another pelvic PT was ineffective. Carolyn is primarily a trainer now, and she asked me to volunteer as a subject/patient in a training for PTs. In exchange, she provided an assessment and we talk on skype every month or two, so I am not actually getting hands on treatment from her but she has been helpful in terms of referrals and information. I have had a lot of pelvic PT from PTs from her "school" with little improvement unfortunately.

On to the update - Carolyn and my psychologist have been pushing me to "play through the pain" and approach life as normally as possible despite the pain (idea is to reinforce to the brain there there is nothing actually wrong) - so exercise, gentle yoga, social interaction, eliminating any modifications, dating, ect. Can't say I have fully embraced this yet, but I am doing my best. I actually managed to arrange a hookup with an old-fling just to test myself out sexually (outside of masturbation) and things went fairly well. I did flare up afterwards but I had a pretty damn powerful orgasm so not unexpected I guess. The flare died down and I actually had a great week or two, but yesterday afternoon I flared up big time. What really bothers me is the physical appearance of the tip of my penis - it just looks red/irritated/rashy at times and I think that visual sets me off into bad thinking. So, today is miserable, but whatever. Hopefully tomorrow is better.

Also, I've been taking Quercetin, have improved my diet, started morning meditation

[scotcan]

Hi WS is good you for some free PT even though it hasn't helped. I see a PT in Milton, who was trained by Caroline and she's quite good. Her name is Christine Bessette.

I've also been taking any accredited quercetin product and found that helpful with the urethral burning pain. Although I had to order my last batch from shoppers as the website has been down for a few months, and it was expensive!

I know what you're saying about the tip of the penis looking red and inflamed, that happens with me too. It seems to be a lot worse when I sit for extended periods. Overall though things get better over time, I'm feeling much better than I was 6 months ago, and hopefully 6 months from now I'll be even better!

[WS1234]

Tip of penis and urethral pain - any tips on managing this specific symptom? Its by far the most bothersome for me, and I haven't really been able to put a dent in this symptom through my stretching, yoga and meditation work. Any tips on this would be welcome.

[webslave]

It's usually sourced to the anterior insertions of the levator ani muscles.

[scotcan]

Hi WS, this was my main problem and still is to a certain extent. It's subsided to a bearable level now, I don't have a definitive answer for you, as we're all different, but here's what I've found helpful.

Sitz baths (pull foreskin back to expose the whole tip)
Apply polysporan gel to the tip in morning and before bed
Quercetin (take by itself, not with other medications or supplements - leave 2 hour window either side)
I also take fish oil, ashwagandha & Shilajit
M2M relaxation and deep breathing
Try not to think about it!

[WS1234]

I'll admit it - I continue to have a huge problem getting over the notion that there is something foreign down there causing my issue, mainly because of the timing of my symptoms starting shortly after a dodgy BJ. I have been dealing with this for almost 4 years. The last 2 years I have put in a sustained effort at CPPS/non-bacterial approaches and have had no improvements at all. I have worked with multiple Pelvic PTs who mimic the WA protocol, psychologists, practiced mindfulness and relaxation, diet and lifestyle modifications, chiros, pain clinic, various meds and more but none of these has budged my problem an inch. I will get my hopes up when I start something new, and then once it doesn't work, I crash back to being depressed and thinking there is something being missed by my doctors. The visual change at the tip of my penis is also a huge trigger for me. It just looks inflamed and sick to me, and the visual doesn't help things mentally. I am running out of things to try at this point, but I open to suggestions. Again, my primary problem is pain/discomfort/irritation through my urethra (from tip to taint). Any recommendations on dealing with this specific symptom, or in general would be appreciated.

[NeoKortex88]

Do you still stretch daily? Hot baths? Massages? Etc?
It keeps my pain away.

[webslave]

Have you tried Prelief?