Health Organization for Pudendal Education

Hello, I'll try to be brief and to the point. Thanks for taking the time to read this. I am a 35-year-old male:

It all started ~ 2010 after having sex w/ my ex. I developed unspecific urethritis that lasted 7 days. Urine/blood cultures came back negative for STDs as a urethral swab. It really scared me enough to go the the ER as it would any young male in his late twenties.

Over the next few years, I had intermittent unilateral testicular pain that came and went. Went to Uro at the VA medical center, but they couldn't find anything wrong - was prescribed pain killers.

This is where things really heat up. In 2013, at the beginning of my internship (ironically at the VA medical center) I developed a burning pain in the urethra during the tail end of urinating in a stall. This was a seminal moment as a constellation of symptoms came crashing down on me thereafter. Here is a list of what I experienced for the next 9 months:

-increased urge/frequency of urination
-burning sensation in tip of penis
-lower back pain
-rectal fullness (intermittently)
-heightened anxiety and depression
-testicular pain (intermittently)

This lasted for 9 months - well past my internship and into my clinical fellowship at the VA medical center. Here is the care I received during this time:

-multiple urologist appointments
-multiple digital rectal examinations
-urodynamic testing (came back as normal)
-multiple rounds of antibiotics (different types and for long periods)
-chiropractor adjustments (none which helped and cost me a lot of money)
-acupuncture (did not help)

Here are the pain management strategies I employed to reduce pain (not sure all of them worked):

-heat to the perineum
-sitting on the toilet after work for hours
-stretching pelvic muscles frequently
-supplements like Prosta-Q and turmeric compounds

At the end of the nine months, this problem faded out gradually and then completely. I figured my "prostate" problems finally went away on their own. So I as basically symptom free by the middle/summer of 2014.

Lets fast forward to now. I moved from my hometown to a new state, and I have been working full time as a speech-language pathologist for about 4 years at various SNFs (skilled nursing facilities). My job is pretty high stress. I would often smoke marijuana for 6 month increments and was smoking cigarettes as well (have been smoking cigarettes long before these symptoms ever came on the scene). I have quit smoking cigarettes and using nicotine in any form 3 separate times while I have been living here. I have exercise a lot and have a extensive hx of exercise (I was infantry in the Marine Corps for 6 years). My symptoms would mildly flair up from time to time if I lifted very heavy w/ squats of ran distances longer than 6 miles at a time. Nothing significant though.

This new flare up comes at the heel of quitting nicotine - again - and about 1 month post quit. I was very stressed at work and I recently decided to quit marijuana as well so my system - to say the least - was pretty shocked. I ate way more junk food than usual, quit exercising , and masturbated more to relieve the stress. On 8/7/18, I felt the same symptoms come back in full force and it brought me to my knees. Except this time, the symptoms are different:

-rectal fullness and feelings of incomplete evacuation
-extreme difficulties passing gas
-feelings of genital sensitivity and being aroused but with no erection (what I found to be called PGAD) - kind of an electrical feeling in my genitals.
-hard/flaccid penis
-slight burning in urethra (which before in 2013 was the primary symptom but now it's very infrequent)
-burning sensation in coccyx area

I have been using turmeric compound pills, sitz baths, heating pads on perineum, and pelvic stretching to alleviate the pain. It's been over three weeks and the symptoms keeps changing in intensity. Now, it's less rectal fullness and more PDAG. The relief efforts I've employed seem to minimally help. I've been to the MD and they sent me to physical therapy to relax the pelvic floor muscles. My therapist is very knowledgeable but can only see me x1 every 2 weeks which I think is not nearly enough to address this issue.

My questions are:

1) Do you think this issue will fizzle off like it has before?
2) Have you heard of the PGAD ever going away on its own and does masturbation exacerbate it?
3) Should I try medications like Lyrica and antidepressants (I'm deathly afraid of them as i'm currently taking .5 mg of clonazepam -been taking it for 10 years - and have a hard time coming off psych drugs)?
4) Should I insist on a nerve block before getting on medications?
5) Does anyone have success stories that are similar to mine and would like to share their "secret?"

I'm very distressed right now...can't go into work because it's too difficult to deal with the pain. I'm not sure I'll be able to go back to work unless I can alleviate this pain or the anxiety/depression. My boss is very understanding, but I don't know for how long. I'm at the end of my rope here. Please PM me or feel free to respond to this thread and thank you very much for taking the time to read this.

-ksdog7

Ksdog7 wrote:1) Do you think this issue will fizzle off like it has before?

I would stop running too hard, and definitely stop with the heavy lifting. Weightlifting is how the founder of this site developed her PN problems. I got pudendal neuralgia from cycling, so I've switched to swimming, which is exercise that doesn't aggravate my PN.

2) Have you heard of the PGAD ever going away on its own and does masturbation exacerbate it?

PGAD was initially my primary symptom, but has over time been replaced primarily by just pain. Masturbation in my case just makes me hurt more, typically the next day.

As for "going away", if you've had problems since 2010, and it is caused by nerve problems, my guess would be that you have some sort of permanent damage I'm sorry to say. My physician told me nerve damage that lasts longer than three months is permanent. Based on what I've read online she wasn't correct about that either, just because nerves grow and heal slowly, but eight years is a long time. Still, if it went quiet on you for a good long time, maybe you can get a remission again as long as you figure out how to avoid triggering a flare once the nerve calms down. I certainly hope so.

3) Should I try medications like Lyrica and antidepressants (I'm deathly afraid of them as i'm currently taking .5 mg of clonazepam -been taking it for 10 years - and have a hard time coming off psych drugs)?

I would try anything that could help, personally. As always talk to a doctor! See a urologist ASAP if you haven't already. For me, I tried gabapentin, but it didn't do anything for me pain-wise and I hated the side effects. I can't try amitryptiline because I'm already taking sertraline, but if if it's not contraindicated for you and it might help, why not try it? That's a very cheap drug and easily available. I think Lyrica is more expensive because it's not generic yet(?)

And while Gabapentin was a bust for me, I tried PRF/botox two weeks ago, which has made a pretty good dent in my pain. Now I have to see how long the effects last until I go back for another try.

4) Should I insist on a nerve block before getting on medications?

A nerve block basically confirms that it's your PN that is causing your pain as opposed to some other issue. If you can, have an image-guided nerve block done. The nerve blocks don't last long, though, so you won't get much relief from them. They aren't really treatment as much as they are diagnostic tools from what I understand. The longest one ever worked for me was about 3 days, and that was ropivacaine plus steroid...and Violet on here says that steroids aren't a good idea in nerve blocks as they can further damage the nerve.

I'm very distressed right now...can't go into work because it's too difficult to deal with the pain. I'm not sure I'll be able to go back to work unless I can alleviate this pain or the anxiety/depression. My boss is very understanding, but I don't know for how long. I'm at the end of my rope here. Please PM me or feel free to respond to this thread and thank you very much for taking the time to read this.

Yep, been there, I hear you. Also missed work due to PN pain myself. Get your disability documented by a physician (I got mine from my urologist) and make sure you give your boss that paperwork. That gives you legal protection and your boss will think twice of firing you due to absences for fear of being sued. Then start documenting what your triggers are and do everything you can to avoid. For me, what really set me off was sitting in traffic for long stretches in my car; something is especially irritating to my PN about being in my car, even with my special cushion. So I told my boss I have to work from home 3 days per week. I also have a standing desk because sitting at work was killing me too, and a special chair which I bought that allows me to stand all day with my lower back supported so I don't get backaches.

It's good you have a physical therapist, which is something I haven't tried yet. If marijuana helps and it's legal in your state, keep with that. I don't use it, as it's not legal in my state and it always made me eat more. But I have a friend who lives in a state where it's legal, the same state my PRF doctor is in. She tells me that there many, many pot varieties available for purchase there now, and you can get types that don't really make you eat and that are targeted to help pain. We're probably going to move to that state so I can be closer to my PRF doctor and so I can get legal marijuana for residual pain.

Thank you for the information Puffs.

I think the anxiety/depression is really magnifying this the pain signals that I'm feeling. I started taking PEA (Palmitoylethanolamide) and had a remittance in the pain and anxiety last night quite substantially. However, once i'm in this anxiety state, it quite difficult to turn it off. Hopefully PEA will help in this area. About the PGAD, it's not really bothering me today. I think reading stories about people committing suicide because of PGAD really revved up that symptom. I am feeling more sexually aroused than usual since this all happened, but that may be due to some chemical imbalances or as a way to cope and release "feel good" chemicals.

So right now, the symptoms present from my last post to now are:

-rectal fullness (intermittently now)
-urinary urgency
-extreme anxiety (abated briefly when I took PEA last night)

If you or anyone has any extra thoughts, feel free to let me know - and thank you.

Ksdog,

It sounds like anxiety and depression are big issues for you right now. Did you have this before the pain or do you think it is a result of the pain? Is there a therapist or psychiatrist you can see for an evaluation and to deal with these issues? Maybe that will ease your discomfort some. Have you see a pelvic floor physical therapist? Some people have luck with physical therapy and other do not, but I think it is always worth a try. My physical therapist is extremely knowledgeable and even though my PN pain hasn’t responded to therapy she has helped with the issues that have come from compensating for the pain and lack of sitting.

I disagree that long standing pain is a sign of permanent nerve damage. I think if the driver of the pain can be identified or even if the aggravating factors are removed, that the pain can diminish significantly.

Stephanies

Stephanies, you're exactly right. The pain began after quitting smoking and when I was having some serious stress. Then the pain outpaced my coping skills and the anxiety attacks began - unrelenting. I'm going in today to see my mental healthcare provider. To be honest, I'm scared to death about going on any anti-depressants, but if they can help me cope with this better, perhaps the pain will reduce - and maybe i'll feel better again. They want to me updose on my clonazepam as needed, but i'm also terrified that i'll have a paradoxical reaction or need more and more of the medication (been on .5mg of clonazepam for 10 years). Anyway, thanks for your support (both you and puffs) and i'll update everyone on my symptoms (CPPS/PN) as I try to fix my mental health.

I think it is reasonable to try nerve blocks but Prof. Robert warned against getting more than 3 steroid blocks due to possible damage to the nerve. I think nerve blocks can potentially give you some valuable diagnostic information but I think it's smart not to overdo them.

As far as masturbating making PGAD worse -- I think it depends on what's causing your PGAD. If it is due to a nerve being irritated then I think you have to be careful about irritating the nerve further. For some people it relieves their PGAD symptoms but for others it makes them worse. I think if you have PN due to an irritated nerve it's probably going to make it worse.

It can be difficult to determine whether the symptoms are what's causing your anxiety and depression, or whether anxiety and depression are what's driving your symptoms. For me it was definitely the symptoms came first and the symptoms caused me to get anxiety and depression, but some people feel like anxiety came first and caused them to get symptoms. Like Puffs said, my problems were musculoskeletal due to weightlifting. So I had to stop heavy exercise and find a way to heal. You will have to follow your instincts on what is the primary cause of your pain. Sometimes it can be a combination of things that trigger it. it's like being a detective but it sounds like you are on the right track with trying various treatments. I think there is a good chance you will find things that help you heal over time.

Violet