I'm so lost and confused, do I have Pudendal Neuralgia?

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I'm so lost and confused, do I have Pudendal Neuralgia?

Postby KennyG » Mon Nov 20, 2017 4:55 pm

Hey Everyone

I've been suffering with rectal pain going on 8 months now

Let me list the symptoms then ill get into the story behind it

Symptoms i had were
- itching of the anus
- bleeding during bowel movements (sometimes pouring out)
- burning during bowel movements
- Pain that lingered all day centralized around the left side of the anus
- sometimes feeling like i had to poop
- Intense Spasms waking me up in the middle of the night and sometimes at random times during the day
- Random but not consistent Tingling sensations in the perenium (sometimes ill go a day or 2 without this)


Now my doctor gave me some anti fungal cream which stopped the itch completely, the burning has mostly gone away and i no longer bleed during bowel movements, that all said i still have horrible pain

the pain is completly centralized around the 3 oclock position of my anus, no testicle pain or penal pain.

At first it was diagnosed as hemeroids but they couldnt find any, then they diagnosed it as anal fissures but couldnt find any fissures

Got bounced between like 6 different doctors, got a colonoscopy, nothing shows

however after the colonoscopy the doctor finds small fissures, months later fissures dont heal

he ended up doing a surgury called a sphincteronomy, 5 weeks after that i went for the follow up, fissures are healed,

HOWEVER, still horrible pain at 3 oclock position, cannot sit for anymore then a minute without it flaring up angerly.

If i stand up sometimes i can get relief and the pain is least when i wake up, by the afternoon it slowly comes on more angerly until its unbearable

I'm currently on sick leave from work because the pain is too much to bare,

Now the doctors are referring me to a doctor to evaluate the prostate, when i look at issues with the prostate im not sure the symptoms line up with what ive dealt with.

I've been googling symptoms for ages since doctors work in slow motion here, one thing that stood out to me was that this pain came on about 8 months ago, around april. I directly remember falling down on some wet grass while kicking a soccer ball around and landing on my back/but. This pain im feeling didnt come on directly after that but within a month, not saying its related but im so lost im looking for anything to latch onto.

I'm completly lost at what is going on.

Does this sound like Pudendal Neuralgia?

Also I'm in the Toronto Canada area, our medical system is slow motion. if anyone knows local doctors that specialize in this stuff please advise
KennyG
 
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby johnmsmi » Mon Nov 20, 2017 6:25 pm

I'm not a doctor...don't play one on TV...and don't really know anything too much other than my symptoms...

That said it could be nerve related. I went round and round with my doctors only to come up with the diagnosis of "pelvic pain". In other words they know something in my pelvis is causing pain...not that helpful if you ask me. Your symptoms sound similar in nature but different in location. I'm getting a ton of pain in my genitals. But also some pain and other symptoms in my anus area. The pudendal nerve reaches both places.

I've found some youtube vids that supposedly help this condition. https://www.youtube.com/watch?v=n4ySWUqK9QY , https://www.youtube.com/watch?v=ji5XI-hY4b4 , (general information) https://www.youtube.com/watch?v=HCjtaJFgv6E

I can't say that it helps my condition yet, (just found them yesterday.) I can only say on doing these exercises it causes pain don't do them.
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby KennyG » Mon Nov 20, 2017 11:24 pm

johnmsmi wrote:I'm not a doctor...don't play one on TV...and don't really know anything too much other than my symptoms...

That said it could be nerve related. I went round and round with my doctors only to come up with the diagnosis of "pelvic pain". In other words they know something in my pelvis is causing pain...not that helpful if you ask me. Your symptoms sound similar in nature but different in location. I'm getting a ton of pain in my genitals. But also some pain and other symptoms in my anus area. The pudendal nerve reaches both places.

I've found some youtube vids that supposedly help this condition. https://www.youtube.com/watch?v=n4ySWUqK9QY , https://www.youtube.com/watch?v=ji5XI-hY4b4 , (general information) https://www.youtube.com/watch?v=HCjtaJFgv6E

I can't say that it helps my condition yet, (just found them yesterday.) I can only say on doing these exercises it causes pain don't do them.


Hey, ya i've seen these videos, I did do some of these like the baby pose and knees to chest for a while, i didnt really see much change.
KennyG
 
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby johnmsmi » Tue Nov 21, 2017 12:07 am

Like I said, not a doctor...I do feel better today than yesterday. If it's the exercises I found on the videos or something else, can't say for sure.

All I know is I can walk again! :|
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby Violet M » Wed Nov 22, 2017 4:34 am

Hi Kenny,

There are some excellent PT's in the Toronto area who treat pelvic pain. posting.php?mode=reply&f=2&t=8517
Patients have posted about Nelly Faghani on this forum. You can read what they said if you go to the upper right and search under her name. You could at least get a pelvic floor examination from her or one of the others. A good PT should be able to tell you what structures are near your source of pain -- for instance whether you have pain/tenderness when they press on the Alcock's canal or the ischial spine via the rectum. Those are points where the pudendal nerve would most likely be tender if you do have pudendal neuralgia.

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.
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Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby KennyG » Fri Dec 08, 2017 5:22 pm

Violet M wrote:Hi Kenny,

There are some excellent PT's in the Toronto area who treat pelvic pain. posting.php?mode=reply&f=2&t=8517
Patients have posted about Nelly Faghani on this forum. You can read what they said if you go to the upper right and search under her name. You could at least get a pelvic floor examination from her or one of the others. A good PT should be able to tell you what structures are near your source of pain -- for instance whether you have pain/tenderness when they press on the Alcock's canal or the ischial spine via the rectum. Those are points where the pudendal nerve would most likely be tender if you do have pudendal neuralgia.

Violet


Hi Violet thanks for your response

I've signed up for local physio we'll see where that goes

I constantly feel like im having setbacks, ill sometimes have days where the pain is down from 10/10 to something like 7/10, then something simple as moving a jug of milk around the kitchen ill get tingling in the perianal area, later it will feel like there is a cut or something in there but i know thats not the case. Yesterday i had a really strange sensation which was the perianal area felt wet, when i went to check it wasnt wet at all. Does this sound like pudendal?

Some other odd symptoms i've started to feel
- after defication(which hurts), if i urinate immediatly i have burning urethra, but any other im of the day i dont have the burning.
KennyG
 
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Joined: Mon Nov 20, 2017 4:37 pm

Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby Violet M » Sat Dec 09, 2017 6:34 am

Strange sensations can certainly be nerve related. I had some strange ones too although I don't remember a wet feeling. I also had unexplainable pain flares with good days and bad days.

BM's probably stir up the pelvic floor muscles and could cause them to spasm and impinge on the PN causing urethral burning. Just brainstorming a possible mechanism for what you are describing. I had urethral burning too but not all of the time.

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.
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Location: United States

Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby KennyG » Sat Dec 09, 2017 9:44 pm

Violet M wrote:Strange sensations can certainly be nerve related. I had some strange ones too although I don't remember a wet feeling. I also had unexplainable pain flares with good days and bad days.

BM's probably stir up the pelvic floor muscles and could cause them to spasm and impinge on the PN causing urethral burning. Just brainstorming a possible mechanism for what you are describing. I had urethral burning too but not all of the time.

Violet


This thing has been a battle forever,

Do people have issues lifting even just light weights with this condition? I've been pretty diligent about avoid lifting anything, even just a jug of milk, yesterday i was in the garage and simply move an object that weighed at most 5lbs.

While moving it i felt tingling in the perianal area and now feel pain worse today.

Insanely frustrating, how can you live any sort of a normal life while in such horible pain and the constant set backs, over and over and over and over.

Bad bowel movement? setback
Lift even a light object? setback
Sit in the car? setback
stretch even a little to much? setback
walk to far? setback

its mindnumbing... infuriating and depressing

holy crap
KennyG
 
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Joined: Mon Nov 20, 2017 4:37 pm

Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby Violet M » Mon Dec 11, 2017 6:42 am

I know it is beyond frustrating. Before I had my PNE surgery I could hardly even stand up to cook a quick meal. Just about any kind of activity would set the nerve off so I understand what you are experiencing and it's not fun.

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

Re: I'm so lost and confused, do I have Pudendal Neuralgia?

Postby KennyG » Fri Dec 15, 2017 12:09 am

So i went for my first physio session

The lady did alot of probing but i never feel like a deep dager pain while she was pushing around in there which boggels my mind

I drove home fine and then the pain crept back

She recomended doing 75 sloppy pushups and 75 happy baby poses every day

Also she recomended attempting to move my penis, to me that sounds like a kegal and i thought that was supose 2 make symptoms worse not better

Does this sound right?
KennyG
 
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Joined: Mon Nov 20, 2017 4:37 pm

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