How I overcame extreme penis tip pain from CPPS.

[Joe_Eskimo]

Here is the (short version) of my story and the solution that saved my life…

In 2012 I truly thought my life was over… I was experiencing pain in the tip of my penis which ranged on a given day from “very uncomfortable” to “nearly unbearable”. The pain flared up and/or was made worse through some combination of sex, stress, and sitting (though it took me an embarrassingly long time to figure this all out, especially the sitting part since the pain was in “the front” and not “the back”). For me, relief came from lying in a tub of hot bath water but the pain returned with a vengeance when I got dressed and tried to live my life. On the bad days, even silk boxer shorts felt like a cheese grater across the tip of my penis when I moved around.

For most of that year I experienced the fear, depression, and confusion that I see are common in this forum. I was tested for STD’s, (negative) prescribed various antibiotics (no help) and pain medications (useless). I finally ended up being referred to one of the top urologists in the US who ran several tests across several visits (including that truly awful camera thing they shove down the urethra) and was ultimately told by the urologist (who seemed annoyed that I’d wasted so much of his time) that there was “nothing physically wrong” with me, that I likely had psychosomatic pain caused by stress. I pushed back on this diagnosis a bit and he told me, “Look, there’s nothing physically wrong so there’s nothing I can do. You’re just going to have to live with it.” and walked out. Thankfully, after the doctor left, one of the nurses (in a whispered tone) told me there were other “theories” about this sort of pain and that I should buy a book called “A Headache in the Pelvis”.

I bought the book, “A Headache in the Pelvis” on Amazon and it was a revelation for me (as I can see it’s been for others). The book spoke directly to my experience over the previous year. With every page I was saying “Yes! This is it! This is what’s happening to me, finally I have an answer!”. The downside came in learning how intensive the Stanford/Wise-Anderson Protocol treatments were and how I would likely not get better without leaving my (extremely) high stress job as an executive for a Silicon Valley startup company. I was willing to do anything to be free of the pain, but there was a waiting list for treatment and my company’s future was largely dependent on me. So many people were counting me to finish the work we’d started. Quitting, and letting everyone down, was almost unthinkable. I decided that I must (armed with my new knowledge about CPPS from the book) find a way to endure until a future date when I could step away from work and devote myself to the treatment at Stanford.

For me, a HUGE component of the pain was the tip of the Penis coming into contact with clothing. If I was undressed, or soaking in the tub, I was largely pain free. I understand from research that pain from CPPS manifests differently in different people but, for, me, this was a very big factor. I’ve always been an inventor/tinkerer, and so, I set about to create some sort of “device” I could wear that would prevent anything from coming into contact with the tip of my penis. I went to Walgreens and bought up anything and everything that could possibly be used for such device. I bought different adhesives, condoms, those little cushions for painful foot corns, and dozens of other items. Long story short, after many, many, trials of different devices, (several worked well but most made it very difficult to pee) the solution ended up being incredibly simple. A Band-aid. I tried several varieties. The best, by far, were Band-aid brand “sheer strips” with the quilted pad, the ones about the size of a man’s thumb from the nail to the lowest joint. I take the Band-Aid, facing sticky side up and fold about an 8th of an inch or so of the right side (the sticky part) over onto itself to create a little “pull-tab”. I then hold it horizontally, center the padded part over the opening of the penis and press the band-aid as tightly as possible so it sticks to either side of the penis head with the pull tab on the right (presumably a lefty would want the tab on the left). To Pee I simply pull (carefully) the tab back making sure to keep the band-aid dry then pull tight and re-stick it when done. With the “sheer strips” band-aids I can re-stick many times throughout the day and generally only need a new band-aid after a shower. For me, this trick resulted in instant (nearly 100%) relief of the pain. I’ve been wearing the Band-aid for 7 years now. I still have minor discomfort from time to time when I REALLY push my luck (tons of sex, many hours sitting on hard surfaces, etc.) but the severe pain NEVER occurs when wearing the Band-aid. I also still can’t wear denim jeans comfortably even with the Band-aid. The jeans just press too hard and cause discomfort. I’ve found several different soft, loose fitting pants I like and, along with comfortable boxers I am almost always free of ANY pain or discomfort. Make no mistake, I am not “cured”, if I try to go without the Band-aid I’ll be right back in terrible pain again. Once in a blue moon (a few times a year maybe) I’ll be going about my business and suddenly the pain is there with a vengeance. When this happens, (after gingerly limping to the bathroom biting my lip) I, 100% of the time, find that the band-aid has come loose (usually when I’m very sweaty or something like that). For these (very rare) cases, I always have a few extra Band-aids in my wallet and a few in the glove box of the car. Honestly, it’s become such a normal and small part of my life that I don’t even think about it anymore and haven’t concerned myself with getting further treatment. I went from complete incapacitated hell every day of my life to fully functional and pain free and have been so for nearly 7 years.

I realize this is likely only helpful for certain guys who have the same flavor of CPPS as me. Based on my research there are many sufferers for whom this will not be a relevant strategy for relief. I knew since I was a kid (long before any symptoms) that I had a tendency to clench my pelvic area when stressed (also, later, during sex) and, after learning about CPPS I’m absolutely convinced that decades of clenching and extremely high stress caused this condition in me. That said, I joined this website and wrote this post with the hope that someone out there who is suffering from this terrible pain can find relief the same way I did. Maybe a doctor will read this and can use this technique to help someone, even as a stop-gap until a “cure” can be found. I just hope the Band-aid works for someone else as it has for me, it’s instant, very inexpensive, and nearly 100% effective in relieving my pain. At the end of the day, this simple little thing gave me my life back.

In the spirit of full disclosure there is one other potentially important factor in my story. I no longer experience stress in the way I did before. After many thousands of hours of deliberate mental work, I have nearly eliminated all stress, worry and anxiety from my life. How much of a factor this has been on my pain condition I cannot know. Maybe, if I still experienced stress but used the Band-aid I would be in the same position today. Or maybe, if I still experienced stress the condition would have worsened to the point where the Band-aid no longer provided sufficient relief. I have no way to know. I do know that even after years of being stress free my CPPS has not “healed”. That said, my new life without stress, worry and (very little) fear is amazing. Even if I knew the stress reduction had no effect on my pain, I would do all the mental work again without question. Because of this, (I hope this last comment doesn’t upset anyone who is still suffering) I now, in all honesty, view my CPPS as one of the best things that’s ever happened to me.

Good luck to all of you out there dealing with this nightmare. Keep searching for an answer to your pain and don’t ever give up hope.

[webslave]

That's an interesting example of how allodynia works and how to combat it. Allodynia = painless stimuli experienced as pain.

The best, by far, were Band-aid brand “sheer strips” with the quilted pad, the ones about the size of a man’s thumb from the nail to the lowest joint. I take the Band-Aid, facing sticky side up and fold about an 8th of an inch or so of the right side (the sticky part) over onto itself to create a little “pull-tab”. I then hold it horizontally, center the padded part over the opening of the penis and press the band-aid as tightly as possible so it sticks to either side of the penis head with the pull tab on the right (presumably a lefty would want the tab on the left).

Could you post a photo of how you do this, using your finger as a penis substitute? A picture is worth a thousand words to many readers. Thanks!

[Joe_Eskimo]

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Picture #1: With the sticky side of the Band-aid facing me, a small section on the right is folded in on itself to create the "pull-tab"

Picture #2: The Band-aid is applied snugly to the tip (no gap between the tip and the bandage's pad). The pull tab can be seen on the right side.

Picture #3: To pee, I use the pull tab to un-stick the bandage from the right side and hold in place with my left index finger on the pad being careful not to get the bandage wet. When finished, I pull back across and re-stick the right side as in picture #2.

For me, the pain comes when something, (clothing mostly) RUBS (even very gently) across the tip. I initially found it strange that the pain would NOT (as would happen with a bruise or a sore) occur when I applied direct pressure (without motion) to the tip. Pressing on the tip with my finger does NOT hurt but silk boxers ( or anything else) brushing across the tip causes severe pain. The Band-aid is in direct contact but does not move and therefore prevents the clothing from rubbing the tip which, for me, prevents the pain from occurring.

Admin comment: Thanks for posting this

[WS1234]

Are you using the bandaid while you're sleeping too?

[Joe_Eskimo]

Yes, I use it while sleeping too.

For certain situations (for example if I take a shower before bed knowing I will shower again in the morning) I sometimes use another trick. I'll tear off a small square of GLAD Press 'n Seal wrap and stick it over the tip to not "waste" a band aid. This is sufficient for sleeping but not a solution for all day since it's too thin to completely prevent the pain and fails to re-stick after a couple of trips to the bathroom. I also may use this Press 'n Seal trick if I have a lady friend (who does not know about my condition) over and suspect we may have sex. It's much easier to remove and discard the press n' seal in the heat of the moment than a band-aid. Tearing the Band-aid off quickly/carelessly can be painful and even bleed.

I have had a few times (just a few over 7 years) when the Band-aid came loose during the night. Sure enough, I'd wake up during the night in pain. At least one time I even had a dream where I was in pain then woke up to find the Band-aid had come loose.

From my personal experience and learning about CPPS, I very much believe that prolonged stress, leading to tensing of muscles for decades, caused my condition. The actual onset of my pain symptoms came during the most stressful week (both professionally and personally) of my life. It's hard to believe that's a coincidence. I've always tried to be open minded, even trying to leave open the possibility that it was "all in my head" as more than one doctor (and friends) suggested. The occasional waking up in the night when the Band-aid has failed or sudden blast of pain during the day only to find (every time) that the Band-aid had failed have me convinced that it can't be "all in my head". Certainly not anything I'm conscious of anyway...

[WS1234]

Interesting. This is my main symptom so I guess I'll give it a shot. Two questions for you - did you have any visual symptoms that this helped with (inflamed meatus, glands redness), and are you circumcised?

[Joe_Eskimo]

Yes, I am circumcised. I've actually wondered before how it might be different if I wasn't.

Also, yes, I did have the visual symptoms (inflamed meatus, glands redness) when I was struggling with the pain in 2012. Nothing crazy, it just looked like I'd pulled an all-day masturbation session even though I hadn't. This was a main reason I became so sure that the "problem" must be there at the tip and didn't notice (for months) that sitting was making it worse. I actually don't remember how long it was until the redness/swelling went away but I want to say it was pretty soon after wearing the Band-aid. I also can't know whether it was the Band-aid, or the stress reduction, or both that contributed to these symptoms disappearing. That said, the redness and swelling symptoms have never returned. I also had some pain during urination and a weak stream back then (I REALLY thought I had an STD, then a prostate problem). The urination pain wasn't terrible but definitely there. I remember I had a mental image that it felt like a tiny strand of copper wire was stuck in my urethra near the tip and the urine aggravated it. My urination symptoms went away with the redness and swelling and also have never returned.

For the record, here are the Band-aids I order on Amazon in 100 packs (stores have smaller packs that looks slightly different). I'd guess I go through 800 or so in a year.

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Good luck to you WS1234, I'll be interested to hear if this technique helps you. I'm happy to answer any questions or help in any way I can.

[ChgoGuy]

How exactly does this work well when a penis is in a flaccid state? Maybe I am missing something, but it seems to me like it wouldn't stay in place very long. IDK....

[Joe_Eskimo]

Yeah, even after 7 years I'm still surprised how well they stick. Other Band-aids don't work nearly as well. These are somewhat elastic and very sticky. There are some tricks with practice that help also such as a firm pinch on the right side when re-sticking many times. I could imagine something better but these work pretty darn well.

[WS1234]

It does stick, even in a flaccid state. The main problem I am having is that I have some post void dribble, and I am worried about having a bandaid that has urine on it further irritating things.

[kevin]

Hey Joe, thanks for posting this!

I'm curious how you are able to tolerate the friction of sex, given that soft silk boxers are enough to cause you pain?

[Joe_Eskimo]

WS1234, I've not had much experience with post void dribble beyond a drop or two but I've never had any ill effects even after nights out drinking and such when I'm sure there was some dribble after visiting the bathroom many times. I could certainly imagine some sort of "diaper rash" sort of situation if there is excessive moisture but I have not experienced any negative effects myself. Good luck to you.

Kevin, I actually don't have pain DURING sex. That said, after my initial onset I didn't have sex for about 2 years (I thought I'd never have sex again) since I knew it caused flareups for me so I never attempted it during the worst period. It's weird what hurts and what doesn't, it can be very counter-intuitive. I think a lot has to do with texture and movement for me. When I was trying to figure this thing out I'd bought silk boxers thinking they would hurt less than the cotton briefs I was wearing and they were actually worse (I think because there was much more movement across the tip, the briefs kept things snug so the pain occurred when certain movements/contact happened whereas, with the boxers there was almost constant movement. Pressure does not hurt me, and things that are wet and slippery like an ice cube or a vagina do not hurt for me (thank god).

[GuidoK]

Thank you very much for sharing your experience. It is also my main symptom so I'll give it a try.

One question. In my case I feel burning sensation when urinating and, right after that, a persistent itchiness in the tip of my penis when it comes into contact with clothing. What actually triggers the itchiness and discomfort is urination. Was that your case?

Greetings from Buenos Aires!

[Joe_Eskimo]

I wish you the best of luck Guido.

I hate to say but it's sometimes very hard to remember the exact details of my situation since it was 7 years ago and for most of the time I had no clue what was causing the flareups and symptoms and it was very confusing. I remember it was worse right after urination but I don't recall whether I had a sense that it was "caused" by urination then persisted for the rest of the day. I definitely had a burning sensation when urinating back then. I don't know that I would describe any of my symptoms as "itchiness". That word makes me think of a bug bite or poison ivy and it wasn't like that for me (though perhaps a milder version might feel itchy I don't know.) I had symptoms I would describe as very uncomfortable to sharp stabbing pain.I think I had the pain all the time, even before urinating but, now that you mention, I can't be sure. It felt like there was an exposed nerve right at the tip and the urine would aggravate it. I do recall that I got in the habit of drying the tip thoroughly after urination with a square of toilet paper. I was also always looking to see (I even got a magnifying glass) if there was some tiny object stuck there or some tiny cut. I had the mental image that the urine was like lemon juice going into a tiny cut of touching a nerve.

I'm sorry that some of it is a blur. For me it was complicated. In the later days, after reading the "Headache in the pelvis" book when I was trying to manage the pain/discomfort but had not yet found my band-aid trick I could (usually) keep the pain to a level (discomfort all day and pain urinating) that allowed me to (just barely) function. I had created a mental image of a "100 point scale" which, after reading the book I imagined to be a scale of how inflamed/swollen/aggravated my poor pelvic floor muscles were on a given day. the scale kind of represented my "Pain Potential" at a given point in time. I forget the exact details but it worked something like this. Say, below a 20 on the scale I would feel no pain whatsoever when I did something that triggered pain such as urination, wearing clothes (especially jeans), sitting on a very hard surface etc. I was pretty much never below a 20 but it was a "goal". Next, suppose at a 60 on the scale I had burning during urination (painful but not terrible), felt strong discomfort wearing clothes (perhaps like having one of those green scrubber kitchen sponges down the front of my underwear rubbing on the tip. I could still make it to work and just barely function at this level. Now suppose that I'm at 80+. Severe (but never unbearable) pain during urination and, If I wore clothes it was like having a sharp cheese grater (the little sharp stabby kind used for hard cheeses) down the front of my underwear. Terrible stabbing pain where I could barely walk to the bathroom. On these days I had to call in sick from work and stay home undressed all day. Lots of soaking in a hot bath. For me, It seemed like a day staying home and undressed and in the bath reduced the scale by about -10 points per day. So, if I was at an 80, I could stay home for two days and get to a 60 where I could at least go out in the world. For me, three things made the scale go up: 1.) Ejaculation was the worst! I'd say it was (immediately afterwards) +40 or +50 on the scale meaning it would take 4-5 days of "rest" to get back to the point I was at prior to the ejaculation. I got a little better (lets say -10 points) each day. 2.) Stress! This depended on how stressful the event or the day was. The most stressful day ever might be equivalent to ejaculation (+40 or +50) whereas a slightly stressful day might just negate the -10 points I would have gotten resting and leave me at the same level the next day. 3.) Sitting (especially on hard surfaces OR for prolonged periods in a normal office chair). The sitting took me the longest to realize. My CEO was trying to help me puzzle through it and asked "What makes staying at home reduce the pain as opposed to being in the office making it worse?" Obviously he was concerned with all the days I was missing. I felt embarrassed because I honestly didn't know. Was it all in my head? Was it the hot baths at home that were helping? I'd remembered the book said some people had trouble sitting and I suddenly wondered it the 2 hour commute and sitting at my desk were to blame. Even though the pain wasn't necessarily much worse in my car or at my desk I wondered if the sitting was keeping my "pain score" from decreasing or even making it go up. I got a standing desk at work and stayed for a week in a hotel right by my office. I also got one of those doughnut hemorrhoid pillows for the car. HUGE DIFFERENCE. I'd known I had immediate pain when sitting on a very hard surface (hard wooden bar stools were the worst). But the pain while sitting on a soft comfortable chair or car seat wasn't much worse than normal so I hadn't made the connection that it was contributing to my overall pain score. By never having sex, sitting as little as possible and never on hard surfaces, and trying to avoid stress I could keep to a 30 or 40 on the scale and function most of the time. Then a stressful day would arise, a nocturnal emission, or cross country plane flight, and we're back to "flare-up" mode where everything hurts like hell and it takes days to get back to a reasonable level. I don't know how this mental model corresponds with reality (is it really a subjective indication of how swollen the pelvic muscles are?) but it helped me to manage my symptom and I write about it in case it helps someone else.

That said, with the band-aid, it's ALMOST as good as being undressed (where there is no pain or discomfort at all). I'd say I can be at a 60 or 70 on my scale and still feel nothing throughout the day (as long as that rascal stays put). With the band-aid I have to get into 90+ territory to feel discomfort (what would have been maybe a 30 before). The only way I can get to 90+ these days (as i mentioned I've pretty much eliminated all stress) is to have sex every day multiple times. Then I need to take a break and let things calm down again.

[GuidoK]

Thank you so much for such a kind and thoughtful answer!!

I can identify with almost everything you describe.

I still dry the tip thoroughly after urination with a square of toilet paper. And I also got a magnifying glass to check if there was something stuck there or some tiny cut.

Before going to a urologist I visited my physician. After getting my whole symptom description, he suggested I might have a small cut inside the urethra, probably infested with fungus due to the wet environment in there. So he gave me a strong fungicide. I remember how happily I took those pills, persuaded I had find the answer to my problems. Of course, his diagnosis could not be further from the truth.

Going back to the Band-aids. I could not find “Sheer Strips” (probably we don’t get them in Argentina). But I did find regular Johnson-Johnson Band aids, the size of a man’s thumb from the nail. After my morning sitz bath with Epsom salt (the only thing that has given me so far some relief) I took the Band-aid and thoroughly followed your very clear guideline. It was really immediate and complete relief!

But things got a bit messy when I had to pee. The Band-aid was so attached to the tender skin of my tip (I am also circumcised) that I had a very hard and painful time trying to unstick it. After several unsuccessful attempts, I could finally pull off the Band-aid under the shower.

Instead of the Band-aid, I wrapped my tip with a bandage. It wasn’t as comfortable and mitigating as the Band-aid, but it was OK.

Of course, I would really like to know if those “Sheer Strips” have any particular feature that makes them less adherent and, therefore, easier to pull off without hurting the skin. Or maybe that cutaneous pain is something I should get used to.
Thank you again for sharing your comforting experience!!