Health Organization for Pudendal Education

13 months ago I started having chronic penis tip pain with more pain when rubbed. Its really concentrated at the tip on the inside of the urethra and sometimes around the outside. It feels like a constant burning and more burning when touched. There is occasional pain in the perineum area, also a burning and sometimes kind of feels like something is in there. The pain is reduced but not gone when I am naked for longer periods of time. Especially when I am naked and standing, such as in the shower, the chronic pain sometimes even goes away. However, whenever I rub the tip (right on the inside of the urethra) it hurts regardless.

I remember having oral with some jaw clenching around the circumcision line around that time but I cannot remember exactly when. I was also undergoing a period of prolonged and chronic stress and anxiety due to overworking (80+ hours per week) and relationship issues with family, friends and an ex at the time. As a treatment, I was prescribed fungal creams, then bactrim and cipro, then doxy. These did not help. I also had a cystoscopy and blood tests for all stds or other related issues that all came back negative. I tried physio and massage and that has seemed to helped the most with controlling things but the pain is still always there and touching it still always hurts. I find that sitting makes it worse sometimes and sex and masturbation is bearable (easier with lubrication) but to much concentration on the tip causes the same pain. Wearing underwear hurts and so I bought a softer more compressive pair to reduce movement and friction.

Recently I have received a pudendal nerve block as one doctor guessed it could be nerve entrapment. The doctor said this guess was due to my pain profile and because my penis went completely numb recently when riding a bike for about 30 minutes. Also, topical lidocaine applied to the tip seems to temporarily relieve some symptoms but it is hard to tell since I have to be naked and hold the penis in place to apply it properly and being naked already reduces the pain. The block failed since the genitals never went numb. I will be receiving a penile block soon as a second attempt.

I am wondering if anyone else has had a similar experience and if anyone has any possible solutions? I am also wondering if this could be a psychophysiological issue since I have had chronic jaw pain in the passed. This was mostly resolved with some physical intervention (mouth pieces for realignment) and lots of psychophysiological work (alexander technique and unlearning pain cycle habits) over several years. As I mentioned, I was also undergoing a period of great stress and anxiety around the time that it started. I noticed many people on this forum say that mind-body techniques have helped. I found that with my past chronic pain that distractions would remove the pain whereas now, the pain seems to be there regardless and always more acute with physical touch. This is a very difficult condition to live with and I am trying to stay as happy and positive as possible. I am always willing to try new things and appreciate any help

Hi Dinamix,

You mentioned that you have increased symptoms if you ride the bike for 30 minutes. Is that something you do on a regular basis? History is really important in making a diagnosis of PN or PNE. Sometimes a combination of things can trigger PN symptoms. Since massage and PT seem to help it sounds like you could have a pelvic floor tension component, especially with the history of anxiety but at this point you may not have enough definitive diagnostic results to really settle on a diagnosis. When your PT does internal work via the rectum, is your pelvic floor tense and do you have pain when they press at the ischial spine or along alcock's canal?

It's unfortunate your pudendal nerve block didn't give you any valuable diagnostic information. Was it image guided and do you know where along the course of the nerve they were targeting? I hope your next block is more successful.

I don't know if you've had any diagnostic imaging such as MRI yet. If not, it might be something you want to ask your doctor about ordering. You can get lots of information reading in the MRI section of the forum on what type of MRI's to consider -- such as the 3T Potter MRI or the MRN. My doctor wanted me to have a lumbosacral MRI and one of the lumbosacral plexus but also many people have a pelvic MRI using the Potter protocol.

Hopefully some guys will respond with more information for you. It's tough deciding what to pursue next for treatment options. Hoping you get some answers soon.

Violet

Hey Violet,

I don't normally bike but lately I try to exercise regularly. I decided to bike one day and because my penis went completely numb, I have not biked again since. I have read that people with entrapment usually have some sort of physical injury that occurs to cause the entrapment. I was mostly sitting and lying down for at least several months before my symptoms started. Maybe the prolonged sitting coupled with stress could cause neuralgia but could it really cause a more permanent form of entrapment?

The PT helps in the sense that it allows me to control the muscle tension (for example with urinary hesitancy) but only to a certain extent. My pelvic floor is very tense, which we diagnosed with biofeedback, but we had a very hard time getting it to relax. The internal massages have not done much and the external massages are sometimes painful but we have been working on them for about 6 months and while it helps with general control, there is no significant difference with the pain on touching the tip. In terms of home exercises, kegel exercises exacerbates the problem while gentle stretching and breathing alleviates symptoms but the pain never quite goes completely away. Also, massages along the pubic bone next to the penis and down to the sit bone seems to help the symptoms sometimes but they quickly return. Is there anything else I should be trying?

For the failed nerve block, from what I understood, they went for the right pudendal nerve near the SSL and STL using ultra-sound as guidance. The next one is a direct penile block. I will definitely discuss the MRI and MRN if this can help diagnose a neurological disorder. I am confused though as, my pain is mostly a burning in the tip and sometimes a burning and pressure in the perineum. Even when I am very calm and relaxing in bed all day, the pain on touch still happens. From what I read, PN usually causes sharp pains and numbness and tingling and I never really had those symptoms. 99% of my symptoms are burning and pressure but maybe everyones case is different.

Hi Dinamix,

One of my main symptoms was burning. I think it is very common with PN. I also felt like I had been hit with a baseball bat in the crotch -- I don't know if you would call it pressure, or maybe a severe bruised feeling. I don't remember having much numbness, tingling, or sharp pains. In certain positions I would get a shock-like pain but that was not one of my primary symptoms. So, I don't know.....I don't think your symptom of burning and pressure are unusual for PN.

Violet

Hi Dinamix,

Burning is my main symptom as well. Some people say they feel like something is in their rectum or that they are sitting on something. Is that what the pressure feels like? If so, that would be consistent with what others have said.

Two doctors told me (one who only talked to me on the phone) that pne can only occur with an injury, but the more experienced doctors I've talked to (those who have been treating and doing surgery on pn for many years) have not said that to me. They've said it can occur with intensive exercise that flexes the hip (e.g., a step machine) (which is how mine developed). I've also heard people post that their pn developed from a job that involves sitting all day. So, I think pn and even pne can develop without an injury per se.

April

So I had my penile block and while the penis went completely numb, the pain persisted. It magnified the fact that the pain is really in the urethra. I have a follow-up appointment with my doctor next week to go over the results. Because the pain never went away, even while numb, I feel as though this may not be neurological. I am curious to hear what others have to say about this result or if anyone has had a similar experience with a nerve block.

I see that both Violet and April also had predominantly burning pain. Was this pain a general pain or was it concentrated to some areas? For me, as I mentioned, the penis pain is localized only to the tip. The rest of the penis does not hurt. In terms of the perineal pain, it is also a burning. However the pain in the perineum comes and goes. Sometimes I have the perineal pain when I am lying down (for example I had it during my penile block).

To answer Violet's question, my job involves mostly sitting all day. In terms of what the pain feels like, I am not sure I would call it sitting on something and I don't feel like something is in my rectum. It feels more like a general burning and the pressure is more of an aggressive ache or strain over time. It's more focused on one area of the perineum (sort of the the upper middle part). Sometimes I get these quick muscle spasms when I need to urinate or pass gas, which force me to contract my pelvic floor involuntarily. I do use what I have learned with my PT to try and keep the pelvic floor relaxed but she says that my muscles are still very tight. However, when I feel they are relaxed, there is no perineal pain but the penis tip pain is always there.

I think it's worth mentioning that sitting does not always cause me pain. For example, I took up playing piano again recently (to take my mind off things and reduce stress), and I find that sitting while playing does not exacerbate the pain. I practiced for almost 2 hours the other day with no aggravated symptoms besides the normal tip pain. I am not sure what to think of this. Has anyone else had similar experiences?

Was your nerve block done at Alcock’s Canal? One theory of why a block might not provide temporary relief that doctors have told me is that the block was done distal to the injury or compression of the nerve. For example, if the nerve is irritated at the root, a block performed at Alcock’s would provide no relief or very temporary relief. As far as sitting pain while playing the piano vs. sitting at work, I think the answer seems to be that your perineal pain disappears when you are relaxed or distracted and you should try to figure out how that information might translate into a treatment plan.

Stephanies

Hey stephanies,

The first nerve block was done through the buttocks. I believe they were aiming for the SSL and STL. This block completely failed as the genitals never went numb, only my right leg went numb. The second block was a penile block. This was directly through the shaft in both dorsal penis nerves. This was successful but did not reduce the pain at all. Interesting comment about the fact that the nerve needs to be blocked where it is innervated. I will discuss this with my doctor.

Regarding the reduction in pain with distraction/relaxation, I realize that this can point towards some mind-body disorder. The perineal pain is not constant and easily goes away with distraction/relaxation. The tip pain does not. However, from what I have read, I am led to believe that others with mind-body disorders and pelvic pain usually have more general pelvic pain. The fact that it hurts mostly when touching the tip leads me to believe there is physical damage there. Although, even after my cystoscopy, doctors say there is no damage.

I found some similar cases, for example this one https://ask.metafilter.com/238489/Just-the-tip . But in most cases they say the pain was on and off. My tip pain never turns off and becomes more aggressive on touch (e.g. wearing clothes). Although sexual activity is sometimes alright but could be due to the better blood flow due to an erection. I also had a hypospadias operation as an infant but the doctors say since it healed properly this cannot be the problem. This is why I believe it is physical damage, since I received oral with clenching at the same area of that operation around the same time that the pain started. Although it could be mind-body and I am using this as an excuse.

Still open to suggestions and dicussions, thanks

It sounds like your nerve block at the STL/SSL didn't hit the intended target since it affected your leg instead of the genital area. When your PT presses on the pudendal nerve at the STL/SSL is it painful there?

Violet

Hey Violet,

I tried various STL/SSL massages with my doctor and my PT and it aches I guess but we did not think it was anything out of the ordinary.

As a general update, due to the fact that the penile block failed to reduce the pain at all, my doctor believes that this may be a central nervous system issue. Therefore he prescribed Cymbalta and a psychological assessment. I took the Cymbalta for 3 days and the side effects were severe. Nausea, dizziness, confusion, light headedness... I could not work or function properly with them, so I stopped taking them. My psychological assessment is at the end of January but I may seek out private psychology sessions sooner as the hospital does not offer long term private care. They offer some group sessions if the assessment goes in that direction. Does anyone have any experience with psychology sessions and pelvic pain? Should I be looking for a particular type of psychologist?

On another note, I have been seriously considering this to be a psychosomatic disorder. Due to my history of 6 years with chronic TMJ pain and the fact that I have been exclusively in emotionally abusive relationships throughout my life, I believe I may suffer from deeply suppressed emotions. I feel incredibly detached from other people and I blame it on the pain, but a psychosomatic disorder would use that to its advantage to distract me from my emotions. I have been exploring this idea for the past week or so. I am really having trouble feeling visceral emotions. Does anyone have any experience with releasing suppressed emotions and how this effects pelvic pain?

I was also recently contacted by ezer who seems to have undergone the same thing several years ago. I had read his posts in the past but never really considered their meaning. He did not reply to my response but I do believe he may be right about my issue. I will pursue this route for the time being but am very much struggling to understand how to feel my emotions on a day to day basis.

Any advice would be very much appreciated!