New here - My Story, Desperate for Help.

[PleaseHelp]

Hello to everyone here !

First of all I want to say sorry for my bad English but it isn't my main language...

About 1 year ago (April 2016) I was diagnosed with the Diagnose Pudendalneuralgia. It took a bit to get there because maybe it wasn't the usual cause of it. In my entire life I did drugs from time to time, till the moment came when I got those "sexual stimulation" through drugs.. Amphetamine/Cocaine.. Ended up in extreme long and intensive sex or masturbation.

December 2015 I realized the first time a little pain at the area where the pudendal nerves are but never thought about it.. I thought it would be muscle ache or something, I could never believe that I could damage my nerves with that. So I didn't stopped at first because I only got a bit pain when I did this, and thought it would come from the muscles... it went worse of course and that is nearly 1 year ago from now on. Since then I tried to avoid the drugs which didn't work out as I wanted.. so it took me a bit to let it be. Now I'm clean since 1/2 year I would say. So that's the story how I got there to my diagnose !

The pain started from:

1. I only feel pain like a stab or a pressure at the perineal area on one side when I took something (at this time I could sit normally)
2. I feel pain like a stab or pressure on one side of the pudendal nerves at the perineal area (only when I sit)
3. I feel pain the pain on both sides (only when I sit)
4. I feel the pain always and much more when I sit - and on the side right and left from my genitals - but not at/in the genitals.

That was the process of the first few month or 1/2 year !

Meanwhile I can sit on a seat ring, a very long time, nearly the whole day when I change sit position.. I can drive for 5-10 mins sometimes more with the car without getting more pain. I don't have pain while standing, walking, running etc. - is just hurts by normal sitting or laying on my coccyx

Things I've done till today for therapy:

• I got medicaments: Gabapentin 600mg 2/2/2 and Saroten 10mg 0/0/8
• I have tried to do sport on a crosstrainer and to go running - but I don't know if that really helps ! - But most of the time I just lay around or sit around which is not good I think ! I have tried to take warm baths - they actually helped me I thought but the last days I took cold baths and "Cool packs" and put it on that area which took away most of the pain. So that made the pain area less and left the pain area just at the muscle bulbospongiosus and it's more like a "pressure pain"
• Sometimes I put NSAR cream like Diclofenac on the perineal area - that helps too a bit

When I compare it to 1 year earlier - it went over 50% better...
I have no side symptoms like bladder problems, erection problem etc.
Since the begin it is a continually recovering / healing.

Next steps are: Physical therapy and Injection with Cortisone (anti inflammation)

My questions now are:

1. Is it possible that I can get back to full health? I know most people had an accident or an injury - I didn't. In my opinion I can only cause an extreme inflammation and nerves need long time to recover - we all know that.
2. If it is really "only" the muscle bulbospongiosus - what should be my next steps?
3. Same treatment like Pudendalneuralgia?
4. I saw a few people talking here about masturbation and that it is good for prostate, but these people didn't got their disease from that. So in my case I should maybe let it be and try a few weeks or months not to masturbate - so that all can get a rest for some time?

Thank you for reading and your advice - this forum seems to be awesome from the posts that I read !

Greets

[webslave]

Do you find that ejaculation makes symptoms worse, even if the pain only gets worse up to a day later?

[PleaseHelp]

Yes it does, most of the time, but not while doing it, but after - earlier it hold up to 2,3 days, that got less too.. but back to the point - it irritates the nerves so I should let it be, give the nerves and muscles some rest, right?

[webslave]

Post-ejac. pain is very reliable indicator of CPPS, so I think you can disregard the "pudendal neuralgia" diagnosis (it's a junk diagnosis anyway, only relevant in rare cases). So answering your main questions:

1. Yes it is possible; not only possible, but usual
2. No it's not just a single muscle usually
3. No, nothing to do with pudendal neuralgia. Forget about this!
4. Masturbate no more than 2x a week. Very frequent masturbation is known to provoke symptoms

Please fill out your signature.

[PleaseHelp]

Did my signature!

But I checked all other things - everything was good. PSA also. Had an rectal investigation too.
I have an appointment in about 1 month for Pudendal Nerve block...

So according to your statements, what should I do now?
How should my treatment look like when it isn't PN like you think?
Wouldn't it be more problems when I have CPPS?

[PleaseHelp]

Hello kind forum-members,

I need some informations, tips, advices for how to live a better life according to PN, CPPS.

I talk about: taking a walk, yoga, some healthy foods for neuralgia, smoothies, cremes, day/night sleep mode, etc.
(Stretching helped a bit) - So maybe start with yoga?

My actual lifestyle is really unhealthy and probably makes PN worse - I tell you how my days are.

• Going to sleep at 5, 6 am and waking up in the afternoon
• Taking meds 3 times a day - but mostly take the 3 times in 12 hours and then 12 hours nothing because I sleep..
• All I do is - waking up, laying on the couch with the most pressure on my coccyx because I bend my knees, taking 1x bathtub a day and that's it!
• I eat mostly 1 meal a day and that is a big portion then but mostly some junk food because I'm too lazy...

Appreciate all tips and I'm thankful for them!

Greets

[webslave]

Have you worked through Carl's Starter's list?
viewtopic.php?f=5&t=6475

Do you play a lot of computer games?

[PleaseHelp]

I read it and try to do it like carl's list.

No I don't play a lot of computer games, when my illness started I did before that the last 1/2 year..

I will get a cortisone /Botox injection next month to the pudendal nerve because my neurologist told me - and now you are telling me that I maybe don't even have PN :/

I'm a bit confused..

[webslave]

There is a lot of enthusiasm for the pudendal story in parts of Europe. I suggest you read about it here on this forum and this site
https://ucpps.men/puden ... pment-pne/

[PleaseHelp]

I read about it.

I have pain only when it comes to sitting.
I have no pain when I sit on a toilet seat or a seat pillow with a big hole in the middle..
The pain gets less when I stand up or go around.
I have no bladder problems or any problems CPPS would fit to that - and the post ejaculation pain you also have at Pudendal neuralgia..

[webslave]

Prostatitis for years was known as the pain you get when sitting, like "sitting on a golf ball". Pudendal problems relate to surgeries and impact injuries. Unless you have these, you almost certainly do not have a neuralgia of this nerve. It's a junk diagnosis in its current form, used improperly outside of its narrow applicable range of patients.

[PleaseHelp]

I'm with you at the point "from surgery or injury" - most are woman after hysterectomies and the most people I was talking to had an operation ! I mostly self diagnose myself after finding the PN forum because it all made sense! CPPS made no sense for me because I had no signs of bacterial or hyperplasia.. but I read somewhere on the link you said that 95% of them don't have bacteria or the common shown signs.. So I went self diagnosed to my doc and then removed all "possibilities of another illness" and then went to an neurologist with the diagnose I believed!

To be honest my symptoms fit in both, CPPS and PN. CPPS scares me just a bit because of "chronic" : (

To be honest, I don't know if I have a good neurologist.. I only saw a recommended comment on the internet !

I have pain when I sit, around the testicular and sometimes on the perineum (at the beginning of all this much more), now mostly at the muscle bulbospongiosus.

I bought the book "headache in the pelvis" and it comes today - I will try as much as possible from that !

But I don't really know how to go on from now..

You have more experience since you got the diagnose yourself and help a lot of people here... - Does it really sound like CPPS? - Could Drugs and masturbation lead to CPPS?

So you wouldn't recommend the infiltration with cortisone (anti inflammation) and local anesthetic? But If I don't follow the neurologist, I don't get the "being sick piece of paper" because he writes me sick since the begin and I have to show that control doctors.. If that doesn't go on, I would need to go back to my education and do my diploma - from the first day I'm written healthy I need to contact them.. but I can't do that right now :/

I'm really desperate, I try to find a physical therapist and buy the any accredited quercetin product medicament and do the things the book tell me - but what else I should do? Who writes me sick for the further time? A urologist? If the book, stretching and take the medicament that helps for CPPS, is that sign enough for CPPS?

I'm young and don't have these extreme pains most people talk about, I also can sit in some positions when I don't have pressure on the perineal area.. Is there a good chance I can overcome this shit diagnosis? I'm desperate..

[webslave]

I believe from what you have said that you have CPPS. I think you are also panicking, and that makes symptoms worse. Keep away from neurologists, they cannot treat CPPS and will happily diagnose you with pudendal nerve problems that they can then treat for a fee.

No cortisone. No local anaesthetics.

Keep away from PN forums; they are full of deluded and dangerous people.

See a urologist (a young one, trained in the last 15 years).

[PleaseHelp]

Right now I read that the cause can be people who have a disorder immune system or oppression of the immune system via medicaments... I tool 1½ years before my illness a lot of medicaments, daily - really a lot due to toothache for a long time...

It just made more sense for me to hurt a nerve because of excessive masturbation and drugs...

I am in panic since the begin because I can't imagine living a life like this, I am frustrated of course :/

Okay I will try to make an appointment with a young urologist who is maybe specialized on CPPS..

But CPPS gives me weird feelings.. the name chronic is in it and that means for me - forever :/ Can you tell me something to that, that takes away my fear...?

By the way I really appreciate your advices a lot !

[PleaseHelp]

Since I knew this now and maybe failed for 1 year because of the diagnose, my pain went worse... maybe a sign for CPPS - but that makes me depressed because of the chronic factor :/