Hi everyone,
i'm a male and i have chronic pelvic pain for 6years.
i had a cystectomy and removing prostate for painfull bladder syndrome but it fails to relief me from pelvic pain. my surgery gived me also chronic nerve abdominal pain what i'm thinking is ACNES / abdominal wall pain.
my pain is in my urethra left i think /penis and rectal pain 24/7 , i also have scrotal left pain , when walking i feel sharp burning and shooting pain in my urethra or penis.
i have also rectal tenesmus , the feeling i need to poop all the time and a heavy feeling in my anus/rectum, like something is stuck there or my anal sphincter is spasming. and difficults with bowel movements like constipation and diarrhea and pain after a bowel movement.
they tested my pelvic floor and told me i have levator ani syndrome/complex pelvic pain syndrome.
I also had a postive skin biopsy for small fiber neuropathy anf a history of +10 years for left laryngeal neuropathy find on EMG and i have POTS syndrome to.
this week i read that pudendal neuralgia is possibe a disorder of the small unmyelinated C fibers affecfing both somatic and autonomic nerves.
WDT and pinprick give a simple and fast evulation for pudendal neuralgia , but those test only react with C fibers and delta A fibers ,
so if you have small fiber neuropathy , like me and have chronic pelvic pain , do you have pudendal neuralgia to?
my urology told me to go to a pain clinic to get a holistic approach... do i have pudendal neuralgia ??
do i have is pudendal neuralgia?
Re: do i have is pudendal neuralgia?
You experienced my radical robotic prostatectomy surgeryMarky wrote: ↑Sat Nov 25, 2023 5:51 pm Hi everyone,
i'm a male and i have chronic pelvic pain for 6years.
i had a cystectomy and removing prostate for painfull bladder syndrome but it fails to relief me from pelvic pain. my surgery gived me also chronic nerve abdominal pain what i'm thinking is ACNES / abdominal wall pain.
my pain is in my urethra left i think /penis and rectal pain 24/7 , i also have scrotal left pain , when walking i feel sharp burning and shooting pain in my urethra or penis.
i have also rectal tenesmus , the feeling i need to poop all the time and a heavy feeling in my anus/rectum, like something is stuck there or my anal sphincter is spasming. and difficults with bowel movements like constipation and diarrhea and pain after a bowel movement.
they tested my pelvic floor and told me i have levator ani syndrome/complex pelvic pain syndrome.
I also had a postive skin biopsy for small fiber neuropathy anf a history of +10 years for left laryngeal neuropathy find on EMG and i have POTS syndrome to.
this week i read that pudendal neuralgia is possibe a disorder of the small unmyelinated C fibers affecfing both somatic and autonomic nerves.
WDT and pinprick give a simple and fast evulation for pudendal neuralgia , but those test only react with C fibers and delta A fibers ,
so if you have small fiber neuropathy , like me and have chronic pelvic pain , do you have pudendal neuralgia to?
my urology told me to go to a pain clinic to get a holistic approach... do i have pudendal neuralgia ??
Re: do i have is pudendal neuralgia?
Hello Marky,
Sorry, I can't give you a diagnosis, but if you have pain in the distribution area of the pudendal nerve, which it sounds like you do, then you would certainly be suspicious of a problem with the pudendal nerve and you would want to get a proper diagnosis by a specialist. There are many causes of pudendal nerve irritation, including damage or neuropathy caused by disease anywhere along the course of the nerve. I believe small fiber neuropathy of the pudendal nerve fibers would be included in the diagnosis of pudendal neuralgia. But since you have small fiber neuropathy in other areas, you would most likely have a more wide-spread neuralgia and underlying nerve condition than just pudendal neuralgia.
When they checked your pelvic floor, did they press on the pudendal nerve to see if pressing on it causes pain? Do you have pain on both sides of the pelvic floor or just one side? If it's on just one side, it seems more likely to be caused by a mechanical or musculoskeletal problem than an underlying nerve condition that would affect both sides.
I'm not sure what you mean by a holistic approach at a pain clinic. The way that pudendal neuralgia is treated would depend on what is the underlying cause for you. For instance, if you had something like lyme disease causing pudendal neuralgia then you would need to treat the lyme disease. If you have a mechanical entrapment then you would need to treat the entrapment. If you have small fiber neuropathy in many areas, then you would want to focus on improving your overall health/nerve health.
Violet
Sorry, I can't give you a diagnosis, but if you have pain in the distribution area of the pudendal nerve, which it sounds like you do, then you would certainly be suspicious of a problem with the pudendal nerve and you would want to get a proper diagnosis by a specialist. There are many causes of pudendal nerve irritation, including damage or neuropathy caused by disease anywhere along the course of the nerve. I believe small fiber neuropathy of the pudendal nerve fibers would be included in the diagnosis of pudendal neuralgia. But since you have small fiber neuropathy in other areas, you would most likely have a more wide-spread neuralgia and underlying nerve condition than just pudendal neuralgia.
When they checked your pelvic floor, did they press on the pudendal nerve to see if pressing on it causes pain? Do you have pain on both sides of the pelvic floor or just one side? If it's on just one side, it seems more likely to be caused by a mechanical or musculoskeletal problem than an underlying nerve condition that would affect both sides.
I'm not sure what you mean by a holistic approach at a pain clinic. The way that pudendal neuralgia is treated would depend on what is the underlying cause for you. For instance, if you had something like lyme disease causing pudendal neuralgia then you would need to treat the lyme disease. If you have a mechanical entrapment then you would need to treat the entrapment. If you have small fiber neuropathy in many areas, then you would want to focus on improving your overall health/nerve health.
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.
Re: do i have is pudendal neuralgia?
thanks Violet for the reply,
i read a couple things and saw that it also says something about small fiber neuropathy and WDT / pinprick.
can you read these pictures for me ? thank you !
and give you're own advice about it
https://ibb.co/CBqJb1Y
https://ibb.co/7GXS9tz
https://ibb.co/VVPGW0s
https://ibb.co/rpCQtm3
https://ibb.co/59tCwYW
https://ibb.co/fN4w3W9
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8667704/
i read a couple things and saw that it also says something about small fiber neuropathy and WDT / pinprick.
can you read these pictures for me ? thank you !
and give you're own advice about it
https://ibb.co/CBqJb1Y
https://ibb.co/7GXS9tz
https://ibb.co/VVPGW0s
https://ibb.co/rpCQtm3
https://ibb.co/59tCwYW
https://ibb.co/fN4w3W9
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8667704/
Re: do i have is pudendal neuralgia?
Hi Marky,
Thanks for sharing those articles. It would be interesting to know the authors and complete context of the articles so that I could be better educated but it looks like they are from technical medical journals, right? I am not very educated about small fiber neuropathy. I guess my question would be, if you have small fiber neuropathy, is it possible to have some pathology higher up in the nerve - like in the main trunk of the nerve? If they say you have small fiber neuropathy, how do they know whether there is pathology higher up, or have they ruled that out? Have they given you any recommendations on how small fiber neuropathy can be treated?
I don't know much about your history. You say you have had pain for six years. Did it just suddenly start for no reason, or was there an incident, frequent exercise, injury, or illness associated with the start of the pain? I see that you had some procedures, including surgery, but it sounds like that was after you already had pelvic pain and not the original cause of your pain. The reason I ask is because sometimes your history can give a clue as to the possible diagnosis, along with all of the diagnostics tests and clinical exam.
I think it is reasonable, as your urologist suggested, to try going to a pain clinic to see if they can help you, but that won't necessarily provide you with a diagnosis. Was your WDT pinprick and skin biopsy for small fiber neuropathy done by a pudendal neuralgia (PN) specialist? If you have not seen a PN specialist yet, it seems like that would be the next step. I also think it's important for most people with pelvic pain to be evaluated by a physical therapist to check for any possible musculoskeletal issues that could be causing the pain.
I read the article about the 76 year old woman who was "catastrophizing" about her pain. I think the conclusion of the article really says it all -- in the end, even though she was treated for psychological issues, she still had pain. The treatment didn't take the pain away, it just helped her to deal with it better. So, articles like that bother me because so many people on this forum have been told their problem is psychological, or all in their head. I was told to go see a psychiatrist. I can imagine if I had relied only on a psychiatrist for treatment and never had surgery from Dr. Bautrant, I would not be doing so well today. Surgery is not the answer for everyone either, but I think sometimes doctors just send you to a shrink because they aren't able to help you themselves.
Violet
Thanks for sharing those articles. It would be interesting to know the authors and complete context of the articles so that I could be better educated but it looks like they are from technical medical journals, right? I am not very educated about small fiber neuropathy. I guess my question would be, if you have small fiber neuropathy, is it possible to have some pathology higher up in the nerve - like in the main trunk of the nerve? If they say you have small fiber neuropathy, how do they know whether there is pathology higher up, or have they ruled that out? Have they given you any recommendations on how small fiber neuropathy can be treated?
I don't know much about your history. You say you have had pain for six years. Did it just suddenly start for no reason, or was there an incident, frequent exercise, injury, or illness associated with the start of the pain? I see that you had some procedures, including surgery, but it sounds like that was after you already had pelvic pain and not the original cause of your pain. The reason I ask is because sometimes your history can give a clue as to the possible diagnosis, along with all of the diagnostics tests and clinical exam.
I think it is reasonable, as your urologist suggested, to try going to a pain clinic to see if they can help you, but that won't necessarily provide you with a diagnosis. Was your WDT pinprick and skin biopsy for small fiber neuropathy done by a pudendal neuralgia (PN) specialist? If you have not seen a PN specialist yet, it seems like that would be the next step. I also think it's important for most people with pelvic pain to be evaluated by a physical therapist to check for any possible musculoskeletal issues that could be causing the pain.
I read the article about the 76 year old woman who was "catastrophizing" about her pain. I think the conclusion of the article really says it all -- in the end, even though she was treated for psychological issues, she still had pain. The treatment didn't take the pain away, it just helped her to deal with it better. So, articles like that bother me because so many people on this forum have been told their problem is psychological, or all in their head. I was told to go see a psychiatrist. I can imagine if I had relied only on a psychiatrist for treatment and never had surgery from Dr. Bautrant, I would not be doing so well today. Surgery is not the answer for everyone either, but I think sometimes doctors just send you to a shrink because they aren't able to help you themselves.
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.
Re: do i have is pudendal neuralgia?
https://www.painphysicianjournal.com/cu ... ournal=110
https://www.researchgate.net/profile/St ... ion_detail
skin biopsy for small fiber neuropathy was done by a neurologist.
everything started in 2018 that I started having pain in my epididymis, then I started urinating more often day and night.
the first urologist said it was a prostate infection, it got so bad that I started peeing 20-30 times a day and at night too. in 2020-2022 I underwent botox, sacral neuromodulation and hydrodistence but nothing helped. it was then suggested to remove the bladder/prostate and make a replacement bladder with a new piece of intestine.
Now after the operation I have developed chronic diarrhea due to bile salts, pain when the pouch fills and empties and the persistent pelvic floor pain that was already present before the operation such as scrotal pain, penis/urethra pain and anal pain and IBS symptoms.
it seems as if there is something in my urethra that burns or causes sharp pain, I also get sharp pain when the stool enters the rectum. all very strange symptoms.
proctological examination gave the diagnosis of levator ani syndrome/complex pelvic pain.
After months of warm sitz baths, nerve medication, exercises, things are not actually any better.
I will have a anal sphincter EMG this month to see if i have pudendal neuralgia.
but my question was if people have small fiber neuropathy they will have pudendal neuralgia to? because in 1 article i read this :
everything started in 2018 that I started having pain in my epididymis, then I started urinating more often day and night.
the first urologist said it was a prostate infection, it got so bad that I started peeing 20-30 times a day and at night too. in 2020-2022 I underwent botox, sacral neuromodulation and hydrodistence but nothing helped. it was then suggested to remove the bladder/prostate and make a replacement bladder with a new piece of intestine.
Now after the operation I have developed chronic diarrhea due to bile salts, pain when the pouch fills and empties and the persistent pelvic floor pain that was already present before the operation such as scrotal pain, penis/urethra pain and anal pain and IBS symptoms.
it seems as if there is something in my urethra that burns or causes sharp pain, I also get sharp pain when the stool enters the rectum. all very strange symptoms.
proctological examination gave the diagnosis of levator ani syndrome/complex pelvic pain.
After months of warm sitz baths, nerve medication, exercises, things not better at all
in 1 article i read this :
https://ibb.co/h9SYqQy
it says that pinpricck/WTD ( small fiber neuropathh ) is the crux to diagnose pudendal neuralgia ,
so people ( like me ) with small fiber neuropathy , damage to the C fibers and deltaA will have pudendal neuralgia to if they have chronic pelvic pain?
https://www.researchgate.net/profile/St ... ion_detail
skin biopsy for small fiber neuropathy was done by a neurologist.
everything started in 2018 that I started having pain in my epididymis, then I started urinating more often day and night.
the first urologist said it was a prostate infection, it got so bad that I started peeing 20-30 times a day and at night too. in 2020-2022 I underwent botox, sacral neuromodulation and hydrodistence but nothing helped. it was then suggested to remove the bladder/prostate and make a replacement bladder with a new piece of intestine.
Now after the operation I have developed chronic diarrhea due to bile salts, pain when the pouch fills and empties and the persistent pelvic floor pain that was already present before the operation such as scrotal pain, penis/urethra pain and anal pain and IBS symptoms.
it seems as if there is something in my urethra that burns or causes sharp pain, I also get sharp pain when the stool enters the rectum. all very strange symptoms.
proctological examination gave the diagnosis of levator ani syndrome/complex pelvic pain.
After months of warm sitz baths, nerve medication, exercises, things are not actually any better.
I will have a anal sphincter EMG this month to see if i have pudendal neuralgia.
but my question was if people have small fiber neuropathy they will have pudendal neuralgia to? because in 1 article i read this :
everything started in 2018 that I started having pain in my epididymis, then I started urinating more often day and night.
the first urologist said it was a prostate infection, it got so bad that I started peeing 20-30 times a day and at night too. in 2020-2022 I underwent botox, sacral neuromodulation and hydrodistence but nothing helped. it was then suggested to remove the bladder/prostate and make a replacement bladder with a new piece of intestine.
Now after the operation I have developed chronic diarrhea due to bile salts, pain when the pouch fills and empties and the persistent pelvic floor pain that was already present before the operation such as scrotal pain, penis/urethra pain and anal pain and IBS symptoms.
it seems as if there is something in my urethra that burns or causes sharp pain, I also get sharp pain when the stool enters the rectum. all very strange symptoms.
proctological examination gave the diagnosis of levator ani syndrome/complex pelvic pain.
After months of warm sitz baths, nerve medication, exercises, things not better at all
in 1 article i read this :
https://ibb.co/h9SYqQy
it says that pinpricck/WTD ( small fiber neuropathh ) is the crux to diagnose pudendal neuralgia ,
so people ( like me ) with small fiber neuropathy , damage to the C fibers and deltaA will have pudendal neuralgia to if they have chronic pelvic pain?
Re: do i have is pudendal neuralgia?
Hello Marky,
A few days ago a man wrote on this forum that after an appoplex in the pituitary gland he had to urinate very often, many liters a day.
Now I read that your problems started with pain in one scrotum. Then the problems started with the bladder.
Now I have read that hormones are produced in the pituitary gland that affect different organs:
Muscles and bones
thyroid gland
adrenal glands
Ovaries and scrotums, which are stimulated by this gland to produce sperm.
Perhaps this is the beginning of your whole odyssey???
Vasopressin, also known as Adiuretin, inhibits the excretion of water via the kidneys and constricts the blood vessels.
Many diseases can arise from an over- or underproduction of pituitary hormones. According to the article I read (unfortunately in German), the hormones fail in a typical order. If vasopressin fails, central diabetes insipidus is used and water can no longer be retained in the body.
Perhaps everything that followed had its origin here and one symptom after the other developed.
Perhaps it would make sense to consult an endrocrinologist and take another close look at the hormones.
Aristocat
A few days ago a man wrote on this forum that after an appoplex in the pituitary gland he had to urinate very often, many liters a day.
Now I read that your problems started with pain in one scrotum. Then the problems started with the bladder.
Now I have read that hormones are produced in the pituitary gland that affect different organs:
Muscles and bones
thyroid gland
adrenal glands
Ovaries and scrotums, which are stimulated by this gland to produce sperm.
Perhaps this is the beginning of your whole odyssey???
Vasopressin, also known as Adiuretin, inhibits the excretion of water via the kidneys and constricts the blood vessels.
Many diseases can arise from an over- or underproduction of pituitary hormones. According to the article I read (unfortunately in German), the hormones fail in a typical order. If vasopressin fails, central diabetes insipidus is used and water can no longer be retained in the body.
Perhaps everything that followed had its origin here and one symptom after the other developed.
Perhaps it would make sense to consult an endrocrinologist and take another close look at the hormones.
Aristocat
Re: do i have is pudendal neuralgia?
update :
I had a EMG anal sphincter latency, and it was normal.
no neuropathy, so no pudendal neuralgia
I had a EMG anal sphincter latency, and it was normal.
no neuropathy, so no pudendal neuralgia
Re: do i have is pudendal neuralgia?
Hi Marky,
That's a pretty major surgery you had done. I'm sorry to hear you are still having pain.
The pudendal nerve has 3 branches. Only one of them, the inferior rectal branch, innervates the anal sphincter. So I am curious how an EMG anal sphincter latency test could provide an accurate diagnosis of pudendal neuralgia because there are 2 other branches of the pudendal nerve, including the perineal branch and the dorsal branch. Did they test those branches?
Also, the inferior rectal nerve anatomy varies in people. It can come off of the main branch of the pudendal nerve proximal to the ischial spine, or it can come off distal to the ischial spine. So I'm not sure if an EMG anal sphincter latency test would tell you if there is a problem at the main trunk of the pudendal nerve at the ischial spine.
Violet
That's a pretty major surgery you had done. I'm sorry to hear you are still having pain.
The pudendal nerve has 3 branches. Only one of them, the inferior rectal branch, innervates the anal sphincter. So I am curious how an EMG anal sphincter latency test could provide an accurate diagnosis of pudendal neuralgia because there are 2 other branches of the pudendal nerve, including the perineal branch and the dorsal branch. Did they test those branches?
Also, the inferior rectal nerve anatomy varies in people. It can come off of the main branch of the pudendal nerve proximal to the ischial spine, or it can come off distal to the ischial spine. So I'm not sure if an EMG anal sphincter latency test would tell you if there is a problem at the main trunk of the pudendal nerve at the ischial spine.
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.
Re: do i have is pudendal neuralgia?
You talk about me here....yes in my case i think kinda all is falling apart piece after piece.You can read my last posts i developed even newer symptoms....Aristocat wrote: ↑Tue Nov 28, 2023 7:38 pm Hello Marky,
A few days ago a man wrote on this forum that after an appoplex in the pituitary gland he had to urinate very often, many liters a day.
Now I read that your problems started with pain in one scrotum. Then the problems started with the bladder.
Now I have read that hormones are produced in the pituitary gland that affect different organs:
Muscles and bones
thyroid gland
adrenal glands
Ovaries and scrotums, which are stimulated by this gland to produce sperm.
Perhaps this is the beginning of your whole odyssey???
Vasopressin, also known as Adiuretin, inhibits the excretion of water via the kidneys and constricts the blood vessels.
Many diseases can arise from an over- or underproduction of pituitary hormones. According to the article I read (unfortunately in German), the hormones fail in a typical order. If vasopressin fails, central diabetes insipidus is used and water can no longer be retained in the body.
Perhaps everything that followed had its origin here and one symptom after the other developed.
Perhaps it would make sense to consult an endrocrinologist and take another close look at the hormones.
Aristocat