New here. Desperate. Hoping for help

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.

New here. Desperate. Hoping for help

Postby PleaseHelp » Thu Feb 23, 2017 11:37 pm

Hello to everyone here !

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

About 10 month ago i was diagnosed with the Diagnose Pudendalneuralgia. It took a bit to get there because it isn't maybe the usual cause of it.
In my entire i life i did drugs from time to time, till the moment came when i got those "sexual stimulation" through drugs.. Amphetamine.. Ended up in extreme long and intensive sex...
After a year 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 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 form 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 2,3 months 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 dam area on one side when i took something (at this time i could sit normaly)
2. I feel pain like a stab or pressure on one side of the pudendal nerves at the dam 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.. and i avoided to drive the car since that because i really hurt, make tempo , stop and go,.. but since 2 weeks i drove like 3 or 4 times like 15 minutes and it didn't went worse which is a great success i think ! - so i only feel something there when i sit long or there is a pressure on there or i crossover my legs !

Things i've done till today for therapy:
I got medicaments: Gabapentin 600mg 2/2/2 and Saroten 20mg 0/0/1
I have tried to do sport on a crosstrainer and to go running - but i dont 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 and i took a heathing - pad when i sit on my seat ring - through heath i got the most success i believe.
Sometimes i put NSAR cream like Diclofenac on the dam area - that helps too a bit

Because of the fact that the heath helped the most and the fact that everything caused through the things i told, the muscel or fascia could be bonded. So i would need something like osteopath or gymnastic, yoga, something that set's the muscel free again so the nerve isn't trapped in there. That's at least what i believe the last months !

When i compare it to 1/2 year earlier - it went a lot better... i think mostly because of the warm baths or did less drugs to zero. But i don't know how to go on, i don't know what else i can do, just wait ?
Maybe i should try constantly doing sport, everyday a few times, just for the muscel and the bonded fascia..

And i read a lot about Pudendal nerve - the causes , the therapy, everything. Mostly it's caused because of an operation or an accident that happened, trauma etc.
Do you think i have a good chance to get back to full health again? It can't be that my whole life should be in pain from now on. I'm really desperate !


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

Greets
Last edited by PleaseHelp on Mon May 01, 2017 8:30 pm, edited 3 times in total.
PleaseHelp
 
Posts: 43
Joined: Thu Feb 23, 2017 10:41 pm

Re: New here. Male 25. Desperate. Hoping for help

Postby Violet M » Fri Feb 24, 2017 5:13 am

Yes, I think you have a chance to get your health back because peripheral nerves can heal. But you may have to be patient because they heal slowly and you might need to be careful. If there is a chance you have pudendal neuralgia (PN) caused by nerve entrapment, then sports might not be the right solution for you. Exercise made me worse and I still have to be careful, but I have a great life now.

I'm not sure what would be the best thing for you to do now. You can read through the forum for possible treatment options. Many people try physical therapy from a therapist trained especially to treat patients with pudendal neuralgia. Or you may want to travel to a physician who treats patients with PN.

What do your doctors think? Have you had a chance to see a physical therapist yet?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5467
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: New here. Male 25. Desperate. Hoping for help

Postby PleaseHelp » Fri Feb 24, 2017 12:16 pm

Thank you for your answer, feels good to know this forum now :)

I don't really know if i have the neuralgia through entrapment or not, we just figured this diagnose only because of my history and eliminate other diagnosis. Doing a little bit sport on the crosstrainer or go running doesn't change anything, so i don't know if i should keep that going or let it be, but just laying around all day can't be positive either :/

I looked around a lot but i don't really know what to do for now, my neurologist just keeps saying wait and just let the medicaments do their work.. but it doesn't change anything the last 2,3 month so i don't know if that's helpful for now..

He refuses to do anything else like morphi painkiller or injection because he says we should only keep the medicaments for now - but i don't think there will be more difference than that..

I could do physical therapy but there are not really people who have an idea about pudendusneuralgia especially in physiotherapie... What i try next is cannabis oil extract with 10% CBD, maybe that helps...

What you think about an injection, morphin and operation in my case?
isn't the fact that heath helps a lot a sign for fascial bonded or muscle bonded? or what about the thing that ,,,,NSAR cream helps there? it's confusing !

the biggest problem for now seems to be the constant illness because i need to show up to a control doctor every few weeks and i don't know how long this will okay for them, when they suddenly say they can't keep the illness on paper i have to go back to my studying place and do my exams and i'm not able to do that in my situation now so i will be losing my education, what i studied for the past 4 years, that's what makes me desperate :/
PleaseHelp
 
Posts: 43
Joined: Thu Feb 23, 2017 10:41 pm

Re: New here. Desperate. Hoping for help

Postby Andy_Pablo » Sat Feb 25, 2017 12:55 am

Hi there. I am sorry you are in pain. As far as I understand, walking is better than running, because it is free movement without the aggressive jarring of running. Swimming is meant to be good too, although would be best with mellow swimming & no aggressive kicking.

I found CBD oil expensive & made no difference. Its worth investigating though, as it may help you.

Good luck with your treatment.
Credula vitam spes fovet et melius cras fore semper dicit...
Andy_Pablo
 
Posts: 154
Joined: Sat Oct 11, 2014 10:27 pm
Location: Devon, England

Re: New here. Desperate. Hoping for help

Postby PleaseHelp » Sat Feb 25, 2017 1:34 am

Andy_Pablo wrote:Hi there. I am sorry you are in pain. As far as I understand, walking is better than running, because it is free movement without the aggressive jarring of running. Swimming is meant to be good too, although would be best with mellow swimming & no aggressive kicking.

I found CBD oil expensive & made no difference. Its worth investigating though, as it may help you.

Good luck with your treatment.


Hey Andy !

thanks for your advice, i think just normal movement and not aggressive running or crosstrainer is maybe better... at the moment im just lazy because all of this and just sit around on my seat ring, but that's the worst thing because my muscel and everything down there gets limp and weak, what you think ?
I take warm baths and went to thermal bath a few times, that helped, so swimming could be a thing, but unfortunately i have nothing near my place.

If you read my history and progress, what do you think, can i get back to full health some day? found the diagnose very early, since then treatment with gabapentin, changes came up till today (see the history).

Should i start some yoga and stretching ? Because when the nerve is trapped because of my cause, that should be helpful to make it loose in that area.. But when the nerve is damaged, it's counterproductive...

Bought a cbd oil, cost 70 euro, let's see if that helps !
PleaseHelp
 
Posts: 43
Joined: Thu Feb 23, 2017 10:41 pm

Re: New here. Desperate. Hoping for help

Postby Andy_Pablo » Sat Feb 25, 2017 11:23 pm

There is certainly the posibility of improving, especially if you catch it early. But only time will tell if you will have a full recovery. Part of the frustration of this injury.


Unfortunately, I am unable to answer your question about Yoga. I have only a very limited knowledge on the subject. I have often thought that it might be useful, but I cant say with any degree of certainty. Apologies. If you try it & it helps, please let me know.
Credula vitam spes fovet et melius cras fore semper dicit...
Andy_Pablo
 
Posts: 154
Joined: Sat Oct 11, 2014 10:27 pm
Location: Devon, England

Re: New here. Desperate. Hoping for help

Postby Violet M » Sun Feb 26, 2017 6:30 am

Maybe your doctor feels the nerves will heal over time and does not want to do anything that might damage it further. So maybe it is reasonable to try the medication for a bit and see if you will heal. As far as exercise, it is what got me into trouble, so I think it might be wise to proceed with caution.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5467
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: New here. Desperate. Hoping for help

Postby PleaseHelp » Sun Feb 26, 2017 8:08 pm

Violet M wrote:Maybe your doctor feels the nerves will heal over time and does not want to do anything that might damage it further. So maybe it is reasonable to try the medication for a bit and see if you will heal. As far as exercise, it is what got me into trouble, so I think it might be wise to proceed with caution.

Violet

In 2 Weeks i got a new date at my Neurologia doctor, he said we have to change the therapy now in the email.
So maybe I get Lyrica now instead of Gabapentin, Maybe some low Opioide, or he is considering Infiltration...

But you got a point with "maybe he feels the nerves will heal over time", but i dont got that hope anymore :/

So now i have to wait! I will tell the changes here when i was there.

Actually i live near Vienna so maybe i will call Dr. Bodner who is specialised in this case, a few people talked about him in this forum!
PleaseHelp
 
Posts: 43
Joined: Thu Feb 23, 2017 10:41 pm

Re: New here. Desperate. Hoping for help

Postby Violet M » Mon Feb 27, 2017 5:13 am

I wish you all the best if you go to Dr. Bodnar. I will be interested to hear how it goes for you. Please continue to have hope and to keep fighting.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5467
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: New here. Desperate. Hoping for help

Postby PleaseHelp » Tue Feb 28, 2017 1:00 pm

Today I was at a painkiller doctor and we started acupuncture.
We try that for a bit and if that doesn't help we start with electrostimulation acupuncture!

When i asked him if that nerve can heal or recover after already 10 month, he said it's a long time, it's possible but he doesn't know ... i thought 10 month wouldn't be long , what do you think ?
PleaseHelp
 
Posts: 43
Joined: Thu Feb 23, 2017 10:41 pm

Next

Return to WELCOME CENTER

Who is online

Users browsing this forum: pg13934@aol.com and 1 guest