The tests I mentioned (MRI, LP) rule out things that could cause nerve related issues in more than one area of the body. You mentioned tingling up your spine, jelly legs at one point, etc. Blood tests alone can only help so much. A brain MRI rules out even more or can sometimes explain nerve issues. A pelvic MRI with Dr. Potter`s protocol may or may not give answers for your PN, but is worth looking into. I had a local facility use her protocol on a 3 tesla machine, it found hip problems for me ( that 3 other pelvc MRI`s missed.). Dr. Potter did not read it though, so not sure what may have been missed.
As for the pudendal nerve as an issue on its own, don't wait like I have, see a specialist and consider what they/and you deem necessary for treatment options. Hopefully, catching this early will give you good results. I am seeing a new pain management doctor this week and hope the steroid nerve blocks we will discuss may help. Also, get more than one opinion if you feel uncomfortable. If I do not agree with or feel this doctor is not what I need, I will see someone else. I hope you have found someone that can help and get some relief.
Pudendal neuralgia. CPPS, prostatitis, hard flaccid
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healinfeelin
- Posts: 15
- Joined: Tue Oct 16, 2012 2:28 pm
Re: Pudendal neuralgia. CPPS, prostatitis, hard flaccid
Hello thank you everyone for getting in touch regarding this condition and your suggestions. I feel I owe it to others to give an update. Sorry if I havent responded directly to people here yet. None of the following should be taken as medical advice.
I feel this CPPS and prostatitis carryon we get diagnosed with translates as "hi you have lots of horrible symptoms in that private area, I don’t understand them and am not willing to look into them, as its expensive and I can easily give you the prostatitis diagnosis which results in minimal work from myself".
Anyway I’ll get to the good stuff.
So far I’ve seen numerous professionals.
I’ve had hormonal bloods tests by an endocrinologist following my initial low testosterone test, which are now unremarkable and in optimum range. He explained false negative/positive readings are common for this as they are very time sensitive. Stress will also have a massive effect, so if one was to be very anxious during exams, health problems or whatever, a low result would not be uncommon. On having my testosterone retested in the AM (8.30am), it was high end of the range (24..10-30), as it should be for a 27 year old male. The first one was taken at around dinner time and was very low, like 7 or something. Cortisol, thyroid, LH/FSH, vit D etc all fine. This was a really well respected Endocrinologist. So that for me appears to have eliminated the hormonal side.
I have had an MRI of my lumber/sacral region which was also unremarkable, apart from a slight bulge at L5-S1.
I had an ultrasound of kidneys, testes, and bladder, again nothing.
Had an ultra sound of penis, absolutely fine apparently, no fibrosis or hematomata what so ever.
I’ve had slight improvement in perineum pain over the past couple of month. I honestly don’t know what’s helped it, time, a steroid shot, lidocaine patches and ointment, I dont know. However it coincided very closely with using 10mg of amitriptyline, which I had to come off as it had my mood and thinking very unstable. The amitriptyline definitely did something positive to the pain. It pretty much stopped premature ejaculation as well which hasn’t returned. It obviously calmed nerves, and relaxed muscles etc. The pain is still here but a bit better. The hard firm flaccid thing is still apparent. Alpha blockers (alfuzosin xl 10mg at night) and low dose 5mg cialis daily help this symptom more than anything else. If you have not tried this please do so. It helps mentally to see it looking more normal. The alfuzosin also helped a little with pain...a little. So does drinking water. Internal trigger point by a physio made me feel terrible for a week, so my instincts told me this is not the way to go.
Could I ask others in a similar position to state how long they have had this, and to what extent you have recovered?
Could I also ask what brought this on for you? If this is too personal for public please inbox me
I seen a very good pain management guy lately, he basically said its nerve irritation/damage. Its the sympathetic nerves that are causing the issues in that region causing all kinds of problems. He gave me lidocaine patches, lidocaine ointment which help a little with pain but its early days. He also wants me to use Cymbalta but I’ve read some bad things on it regarding withdrawal problems and also sexual and concentration issues, so am a little apprehensive. However I’ve heard some really positive things about it regarding pain and mood, so may give it a go in the new year. The Pain consultant was really the only person I’ve spoken to who appeared to know what he was talking about, I was shocked by this. GPs and urologists just don't want to know and appear to think this is largely psychosomatic regardless of the physical presentation. After a series of tests and questions, the pain guy however agreed the anxiety and depression were secondary and therefore reactive in relation to my main issue of pain. I am fully aware the psychological status has an effect on pain threshold etc, but sometimes would it be so crazy to just LISTEN to your patient.
Anyway take care, I hope this update helps at least someone. Ill update as I get help or new information.
I feel this CPPS and prostatitis carryon we get diagnosed with translates as "hi you have lots of horrible symptoms in that private area, I don’t understand them and am not willing to look into them, as its expensive and I can easily give you the prostatitis diagnosis which results in minimal work from myself".
Anyway I’ll get to the good stuff.
So far I’ve seen numerous professionals.
I’ve had hormonal bloods tests by an endocrinologist following my initial low testosterone test, which are now unremarkable and in optimum range. He explained false negative/positive readings are common for this as they are very time sensitive. Stress will also have a massive effect, so if one was to be very anxious during exams, health problems or whatever, a low result would not be uncommon. On having my testosterone retested in the AM (8.30am), it was high end of the range (24..10-30), as it should be for a 27 year old male. The first one was taken at around dinner time and was very low, like 7 or something. Cortisol, thyroid, LH/FSH, vit D etc all fine. This was a really well respected Endocrinologist. So that for me appears to have eliminated the hormonal side.
I have had an MRI of my lumber/sacral region which was also unremarkable, apart from a slight bulge at L5-S1.
I had an ultrasound of kidneys, testes, and bladder, again nothing.
Had an ultra sound of penis, absolutely fine apparently, no fibrosis or hematomata what so ever.
I’ve had slight improvement in perineum pain over the past couple of month. I honestly don’t know what’s helped it, time, a steroid shot, lidocaine patches and ointment, I dont know. However it coincided very closely with using 10mg of amitriptyline, which I had to come off as it had my mood and thinking very unstable. The amitriptyline definitely did something positive to the pain. It pretty much stopped premature ejaculation as well which hasn’t returned. It obviously calmed nerves, and relaxed muscles etc. The pain is still here but a bit better. The hard firm flaccid thing is still apparent. Alpha blockers (alfuzosin xl 10mg at night) and low dose 5mg cialis daily help this symptom more than anything else. If you have not tried this please do so. It helps mentally to see it looking more normal. The alfuzosin also helped a little with pain...a little. So does drinking water. Internal trigger point by a physio made me feel terrible for a week, so my instincts told me this is not the way to go.
Could I ask others in a similar position to state how long they have had this, and to what extent you have recovered?
Could I also ask what brought this on for you? If this is too personal for public please inbox me
I seen a very good pain management guy lately, he basically said its nerve irritation/damage. Its the sympathetic nerves that are causing the issues in that region causing all kinds of problems. He gave me lidocaine patches, lidocaine ointment which help a little with pain but its early days. He also wants me to use Cymbalta but I’ve read some bad things on it regarding withdrawal problems and also sexual and concentration issues, so am a little apprehensive. However I’ve heard some really positive things about it regarding pain and mood, so may give it a go in the new year. The Pain consultant was really the only person I’ve spoken to who appeared to know what he was talking about, I was shocked by this. GPs and urologists just don't want to know and appear to think this is largely psychosomatic regardless of the physical presentation. After a series of tests and questions, the pain guy however agreed the anxiety and depression were secondary and therefore reactive in relation to my main issue of pain. I am fully aware the psychological status has an effect on pain threshold etc, but sometimes would it be so crazy to just LISTEN to your patient.
Anyway take care, I hope this update helps at least someone. Ill update as I get help or new information.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Pudendal neuralgia. CPPS, prostatitis, hard flaccid
Your pain management guy sounds good healin' , glad you found him and glad that he does sound like a good LISTENER (agree completely 
)
I like this statement in the reasonably new (Feb 2012) Guide to chronic pelvic pain. Especially the last sentence.
Although ongoing peripheral organ pathology can produce persistent and chronic pain, the main focus of these
guidelines is on CPP syndromes in which no peripheral ongoing pathology (such as infection or neoplastic
disease) is detected. The main exception is when pain is due to peripheral nerve damage, which will be
discussed in chapter 6. It's on our home page btw.
The problem being that because there isn't anything to see even with imaging (usually) and as pain can't be evaluated we often get dumped in the 'psychosomatic' category which is going to help no one!
I did like this too.
http://www.psychologytoday.com/blog/dsm ... der?page=2
Who ever Ms Chapman is, she has it dead right with this. . . . . mislabelling, in other words misdiagnosing problems like ours. . . . . could be the wholesale dismissal of real medical symptoms as psychiatric illness- leading to missed diagnoses, incorrect treatment, stigma, and patients understandably feeling greatly misunderstood.
I am still trying to fight my way out from a 'central sensitisation' diagnosis', basically, 'it's all in your head'. Not only did this Dr not listen, he didn't know enough about the problem plus the fact that he didn't even examine me, makes such a mockery of the whole thing.
The medics who do understand are worth their weight aren't they
Take care,
Helen
)I like this statement in the reasonably new (Feb 2012) Guide to chronic pelvic pain. Especially the last sentence.
Although ongoing peripheral organ pathology can produce persistent and chronic pain, the main focus of these
guidelines is on CPP syndromes in which no peripheral ongoing pathology (such as infection or neoplastic
disease) is detected. The main exception is when pain is due to peripheral nerve damage, which will be
discussed in chapter 6. It's on our home page btw.
The problem being that because there isn't anything to see even with imaging (usually) and as pain can't be evaluated we often get dumped in the 'psychosomatic' category which is going to help no one!
I did like this too.
http://www.psychologytoday.com/blog/dsm ... der?page=2
Who ever Ms Chapman is, she has it dead right with this. . . . . mislabelling, in other words misdiagnosing problems like ours. . . . . could be the wholesale dismissal of real medical symptoms as psychiatric illness- leading to missed diagnoses, incorrect treatment, stigma, and patients understandably feeling greatly misunderstood.
I am still trying to fight my way out from a 'central sensitisation' diagnosis', basically, 'it's all in your head'. Not only did this Dr not listen, he didn't know enough about the problem plus the fact that he didn't even examine me, makes such a mockery of the whole thing.
The medics who do understand are worth their weight aren't they
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Pudendal neuralgia. CPPS, prostatitis, hard flaccid
Healinfeelin,
I am struggling with similar symptoms like you, maybe not so numerous in presence, but essence is the same as I wrote you in PM.
my story is somehow similar to this guy:
http://www.harvardprostateknowledge.org ... ents-story
I am doing PT now, and after initial 2 sessions with good outcomes, I also have had quite bad 1 week flare-up after 3rd session of internal trigger point release....But decided to fullfil the planned schedule, at least 10 sessions.
I am still thinking that my problem is not PRIMARY related to pudendal/dorsal nerve, but to general dysfunction of pelvic floor and maybe the prostate as well. (prostate was painful and after touching, the pain radiated into the penis quite vigorously).
I had no Tinel sing when pudendal palpated all along its course. prof. Aszmann said, that most of the candidates for operation do have at least some tender points. I did not have any. Pain is bilateral, mainly at the area of base of penis and ischiocavernous muscles. No sitting pain, no positional change in pain pattern, no urinary problems. Erection is maybe 90% of what it once was, but I do not consider that much significant.
I had ultrasound guided nerve block of dorsal nerve, made by intervetional radiologist prof. Bodner in Vienna, with practically no change of pain pattern. In my eyes, this excludes clasical entrapment, but not pudendal irritation generally. However, all in all, this rather indicates sympathetically transmitted pain, which would open up the options of having superior hypogastric plexus block, inferior hypogastric plexus block or ganglion impair block. I had one pre-sacral block last year, with moderate effect (but clearly better than pudendal/dorsal block)
However, I decided not to contemplate operation anymore (reading the horrible stories of many patients here) and concentrate fully on PT, biofeedback, alpha-blockers etc.
In years 2009-2010 I had this condition several times for 1-2 weeks (most of the time after sex) with FULL recovery with no pain/dyscomfort at all.
Principally I dont see the reason why the hell I will not be able to do it again, though this time it might be a difficult mission.
Matt
I am struggling with similar symptoms like you, maybe not so numerous in presence, but essence is the same as I wrote you in PM.
my story is somehow similar to this guy:
http://www.harvardprostateknowledge.org ... ents-story
I am doing PT now, and after initial 2 sessions with good outcomes, I also have had quite bad 1 week flare-up after 3rd session of internal trigger point release....But decided to fullfil the planned schedule, at least 10 sessions.
I am still thinking that my problem is not PRIMARY related to pudendal/dorsal nerve, but to general dysfunction of pelvic floor and maybe the prostate as well. (prostate was painful and after touching, the pain radiated into the penis quite vigorously).
I had no Tinel sing when pudendal palpated all along its course. prof. Aszmann said, that most of the candidates for operation do have at least some tender points. I did not have any. Pain is bilateral, mainly at the area of base of penis and ischiocavernous muscles. No sitting pain, no positional change in pain pattern, no urinary problems. Erection is maybe 90% of what it once was, but I do not consider that much significant.
I had ultrasound guided nerve block of dorsal nerve, made by intervetional radiologist prof. Bodner in Vienna, with practically no change of pain pattern. In my eyes, this excludes clasical entrapment, but not pudendal irritation generally. However, all in all, this rather indicates sympathetically transmitted pain, which would open up the options of having superior hypogastric plexus block, inferior hypogastric plexus block or ganglion impair block. I had one pre-sacral block last year, with moderate effect (but clearly better than pudendal/dorsal block)
However, I decided not to contemplate operation anymore (reading the horrible stories of many patients here) and concentrate fully on PT, biofeedback, alpha-blockers etc.
In years 2009-2010 I had this condition several times for 1-2 weeks (most of the time after sex) with FULL recovery with no pain/dyscomfort at all.
Principally I dont see the reason why the hell I will not be able to do it again, though this time it might be a difficult mission.
Matt
summer 2009 - episodic post ejaculatory pain,
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly
early 2010- major flare-up, chronification
february 2011 - ESCW wave. major flare-up, lasting 5 months
february 2012 - diagnosed CPPS with irritation of pudendal nerve, hypog. plexus block
june 2012 - dorsal nerve block, no relief
2013 - starting PT with moderate results
2014-2017 better periods interchanging with heavy flare ups
2018 first long remission (several months)
2019-2023 most of the time almost assymptomatic with cca 2 flare ups yearly