Strange changes - please 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.

Strange changes - please help

Postby Lostinaz » Mon Apr 24, 2017 3:02 am

Hello. I'm going to run you thru the bullet points of my story. I had a strange change recently and am desperate for advice.

I'm a straight male I my early thirties. About three months ago, I had sex with someone and woke up with my butt and upper thighs on fire. I had pain behind my penis (bulbocavernosus muscle I believe). After some ER trips and misdiagnosis, I was diagnosed with pudendal neuralgia.

The months have been long and hard on me, especially mentally. The recent weeks have shown a plateau of symptoms. They included pain in the perineum with sitting and laying down. I created my own cushions for this. Also, I would get burning sensation on my inner thighs and lower legs and feet. Most of the muscle pain is actually in my BC muscle area.

So I'm a guy and I have basic needs. I masturbated the other day and woke up with a lack of sensation on certain parts of my penis and testicles. Also, the burning pain when sitting down went away. I'm really scared at this point. What could have happened? I'm really freaked out about the burning perineum pain going away.

Has anyone experienced this change of symptoms? I'd appreciate some advice.

Thanks!
Lostinaz
 
Posts: 8
Joined: Sun Apr 16, 2017 3:36 am

Re: Strange changes - please help

Postby PleaseHelp » Mon Apr 24, 2017 4:35 am

Hey man!

I can relate to a lot of that. Go my illness due to drugs, sex and masturbation. Diagnosed 1 year ago, since that it went over 50 % better, at the beginning it was horrible!

Had that lack of sensation too at the beginning but it went away after some time. But the pain from Pudendalneuralgia didn't went away like in your case.

So you got no pain right now? But a lack of sensation on certain parts of my penis and testicles?

Greets
PleaseHelp
 
Posts: 43
Joined: Thu Feb 23, 2017 10:41 pm

Re: Strange changes - please help

Postby Lostinaz » Mon Apr 24, 2017 5:29 am

PleaseHelp wrote:Hey man!

I can relate to a lot of that. Go my illness due to drugs, sex and masturbation. Diagnosed 1 year ago, since that it went over 50 % better, at the beginning it was horrible!

Had that lack of sensation too at the beginning but it went away after some time. But the pain from Pudendalneuralgia didn't went away like in your case.

So you got no pain right now? But a lack of sensation on certain parts of my penis and testicles?

Greets


I hope I didn't burn out the nerve from masturbating. I'm so scared.

I left the house and went for a drive. When I got home, I realized the pain was dulled quite a bit but still present. When I sit down, it used to burn my perenium fast. But now, it's dull pain that shows up ten minutes or so after I stand up.

An hour later, I had tremendous muscle pain in my lower body and my right testicle started hurting. The scary part of this whole thing is that I have no idea what's going on with my body. My doctors seems to be guessing at this point.
Lostinaz
 
Posts: 8
Joined: Sun Apr 16, 2017 3:36 am

Re: Strange changes - please help

Postby Violet M » Mon Apr 24, 2017 5:43 am

It's not unusual for symptoms of PN to change. Mine did. What kind of treatment are you getting at this point? Did you ever have an MRI to rule out any spinal or sacral nerve root pathology?

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: 5464
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: Strange changes - please help

Postby Lostinaz » Mon Apr 24, 2017 6:46 am

Violet M wrote:It's not unusual for symptoms of PN to change. Mine did. What kind of treatment are you getting at this point? Did you ever have an MRI to rule out any spinal or sacral nerve root pathology?

Violet


Hi Violet! It's great to talk with you. I've been viewing this forum for months and you are the most supportive person I've come across. You really do great work. I think the most valuable thing about PN treatment is emotional support and you do such a great job of it.

My treatment now constists of 2400mg gabapentim, Paxil, and Flexeril. I started physical therapy last week. The PT said my bulbocavernosus muscle is really tight and it could either be the cause of the nerve issue or the nerve issue is causing the tightness. I have another session with her this week. I also use therawand to help massage the bulbo muscle and I do breathing exercises.

I hope the desensitized skin on my genitals clears up. It's one of the scariest things I've experienced. I had spinal and brain MRIs done and they came back fine. I still have a lumbar one to do. No test show any issues, which is the crazy part. My bulbo muscle hurts a lot of the time by there's not much anyone can do about it.

What can you tell me about sacral nerves?
Lostinaz
 
Posts: 8
Joined: Sun Apr 16, 2017 3:36 am

Re: Strange changes - please help

Postby PleaseHelp » Mon Apr 24, 2017 6:59 am

Lostinaz can you explain me what the physical therapist did with you exactly?

I will start physical therapy next week I think, but most people here talk about vaginal or rectal procedure, did you get that too?
PleaseHelp
 
Posts: 43
Joined: Thu Feb 23, 2017 10:41 pm

Re: Strange changes - please help

Postby Lostinaz » Mon Apr 24, 2017 7:01 am

PleaseHelp wrote:Lostinaz can you explain me what the physical therapist did with you exactly?

I will start physical therapy next week I think, but most people here talk about vaginal or rectal procedure, did you get that too?


It was a lower body and inter-rectal trigger-point release. It wasn't bad at all. You just have to breath and relax. I learned a lot about the tightness I feel in my pelvic floor and what I can work on to try and relieve it.
Lostinaz
 
Posts: 8
Joined: Sun Apr 16, 2017 3:36 am

Re: Strange changes - please help

Postby PleaseHelp » Mon Apr 24, 2017 7:08 am

Lostinaz wrote:
PleaseHelp wrote:Lostinaz can you explain me what the physical therapist did with you exactly?

I will start physical therapy next week I think, but most people here talk about vaginal or rectal procedure, did you get that too?


It was a lower body and inter-rectal trigger-point release. It wasn't bad at all. You just have to breath and relax. I learned a lot about the tightness I feel in my pelvic floor and what I can work on to try and relieve it.


Maybe that's a dumb question but did he put his finger in your anus?
PleaseHelp
 
Posts: 43
Joined: Thu Feb 23, 2017 10:41 pm

Re: Strange changes - please help

Postby Lostinaz » Mon Apr 24, 2017 7:20 am

PleaseHelp wrote:Maybe that's a dumb question but did he put his finger in your anus?


I did receive a digital rectal examination and trigger point treatment.
Lostinaz
 
Posts: 8
Joined: Sun Apr 16, 2017 3:36 am

Re: Strange changes - please help

Postby Violet M » Tue Apr 25, 2017 5:35 am

Lostinaz wrote:What can you tell me about sacral nerves?


The pudendal nerve comes off of sacral nerves S2,3, and 4. If there are any impingements at those nerve roots there can be symptoms similar to peripheral nerve entrapment. So my physician ordered a lumbosacral and lumbosacral plexus MRI to rule out any impingements there. According to the Nantes Criteria article pudendal nerve entrapment typically causes pain with no objective sensory impairment. http://www.pudendalhope.info/sites/defa ... iteria.pdf

Pain With No Objective Sensory Impairment
This is an essential clinical finding. The presence of a
superficial perineal sensory deficit is highly suggestive of a
sacral nerve root lesion, particularly involving the cauda
equina nerve roots, or a sacral plexus lesion. These proximal
lesions usually do not cause pain and present clinically with
sensorimotor deficits, especially sensory loss and sphincter
motor disorders. Several hypotheses can be proposed to
explain this absence of objective sensory impairment. The
compression may be insufficient to induce a lesion of the
fibers of superficial sensation, as observed in the case of
sciatica and many cases of carpal tunnel syndrome. It may
also have an anatomical explanation, as several anatomical
territories overlap at this level: the territory of the pudendal
nerve, the territory of the posterior femoral cutaneous nerve
and its inferior cluneal branches, and the territories of nerves
arising from the first lumbar nerves (especially ilioinguinal
and genitofemoral).8


So, I think it would be important for you to rule out any lower spine/sacral radiculopathies. I don't completely agree with the Nantes Criteria since I did not fit it exactly but Prof Robert is a neurosurgeon, very experienced in dealing with pudendal neuralgia (PN) so I would not take what he says lightly. Sacral nerve root lesion is at least something to consider and rule out.

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: 5464
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Next

Return to WELCOME CENTER

Who is online

Users browsing this forum: No registered users and 3 guests