Pudendal neuralgia. CPPS, prostatitis, hard flaccid

[healinfeelin]

Hello everyone I would be really grateful if you could offer me some advice. Iv been suffering for around 5 months with what appears to be some sort of pelvic nerve neuralgia/entrapment. However I couldn’t be sure if it’s this or something slightly similar. (Main questions are at the end).

It started after I was told it was helpful to stretch your penis as a warm up before masturbating. Iv obviously applied too much pressure. There was never any snaps or noises or ripping sounds. Not even significant pain at the time, maybe a little. The only other thing I can think of is I was stretching my legs doing front swing kicks. Around the same time I was doing some exercises, down on the hunkers, bouncing around. I did feel some pressure on the groin area but nothing too major it felt.

My symptoms are as follows:

• Penis pain, almost itchy inside urethra. Horrible tingly, itchy feeling as if ready to ejaculate or shudder. It burns a bit during urination. Feels as if something is maybe stuck or trapped in there. Trapped feeling particularly at the base.
• Perinium feels the same, and hurts when I sit on it. (if i do tingles travel up my body).
• Ache in the base of the penis and pubic bone. Occasionally a prickly feeling up into the bladder.
• Testicles ache on and off.
• The penis in its relaxed state, is smaller, tighter and firm to the touch. Especially when I stand up as if something is being trapped or pulled. It is hard flaccid and very firm to the touch when flaccid.
• The penis skin is numb. (Can feel heat and cold, but not touch unless I nip it).
• The colour is not quite right, as if bloodflow has been reduced. The veins look less nourished.
• After ejaculation the penis goes into a kind of fibrosis rubber like, still state with.
• It has a slight bend to it which it never had before.
• It has an hourglass appearance in the semi erect state before fully filing up in the head. The hour glassing area is accompanied by a thin band of tissue beneath the skin.
• My muscle that is used to stop urination mid flow. This is weak, and does not immediately stop it like it used to. I also cannot twitch my penis as easily by doing this.
• The skin of the penis has become quite dry, the penis head is a dry papery texture, and looks as if its about to crack at times, almost flaky but not quite.
• It looks red at the tip, as if it may be infected but it’s not as Iv had it checked and used antibiotics. I assume this is due to lack of fresh bloodflow.
• Erections are harder to achieve and maintain.
• When erect it feels very firmly erect with no slight allowment for movement downwards like it used to.
• It appears to have lost its elasticity somewhat.

• Anus feels itchy, irritated. A fullness at times. Feels horrible to sit on.
• Groin and hip pain, like an ache.
• Lower back pain, specifically coxxycs.
• Tingly up back into spine and head at times. Even into tongue and tear ducts.
• The pain from the lower back and genitals seems to burn down into my feet at times, specially my big toes, and sometimes heels.
• When this first started I was getting this really strange cold sweat that came on with it.
• Horrible nightmares and a really anxious panicked depressed feeling on waking up.
• Tight thighs (largely gone now)
• Tight glutes (largely gone now)
• Weak jelly legs (largely gone now)
• Sciatica on left (largely gone now)
• Anxious and depressed, almost like having panic attacks. I know this would seem obvious as a reaction to what Im dealing with, but it feels as if its something physical, like overstimulation of the nervous system due to discomfort.

Sitting makes my symptoms much worse.

In large my main symptom is this strange irritated itchy feeling which is located at the base of the spine, up the anus, just beneath the bladder, and behind the penis base. It feels as if something is stuck or out of place. This is just how it feels and Im not exactly sure whether that is where all the pain starts, or whether its secondary to something else. It feels as if something is just nicking the nerve or not in the right place. I feel like I’v trapped or damaged a nerve (dorsal, perineum, pudendal???), or maybe iv damaged a ligament or blocked an artery in the pelvis, inhibiting bloodflow. maybe damaged tissue with scarrring (liberal tear). I feel secondary to this comes all of the peyronies type symptoms. Or perhaps im wrong and it’s the other way around.

Iv had normal blood tests done for STI’s, nothing, took antibiotics, nothing. On examination, all urologists have said my actual penis appears fine in appearance. No bruises or noticeable plaques. Of course I can see the difference in size and colour, but the dr wouldn’t have my previous state to compare it with. I feel the penis symptoms are secondary to something going on a little deeper inside. The drs just keep telling me its CPPS and non bacterial prostatitis. I have had a couple of lowish testosterone results, nothing major, still in the normal range but never the less, low end. That is free testosterone, FSH and LH. Prolactin also lower end of the range. I have visited numerous GP’s and even a neurologist, all have concluded that I don’t have MS or Parkinsons etc.

**The following paragraph may be irrelevant but its worth a mention**
I also have CFS and was treat for lymes disease, but my symptoms for this disease have been nothing like these new pelvic and penis nerve symptoms which appear to be injury related. I just thought Id mention about the CFS as I think its important to give a full history and contribution as I see some people with lymes have had similar symptoms. Another thing is a lot of my ME/CFS symptoms have went into remission since being afflicted with this. Things like fatigue and head splitting migraines. I know that’s maybe not relevant but for the sake of medical research I think its important to be clear.It may be just due to the additional adrenaline in my system at the minute. By the way If you do have this (CFS/LYME/EBV etc) you can definitely get largely better with time so just relax in the meantime.

Back to issue.

This is seriously affecting my life. I would be very grateful if someone could offer me advice on the following. I have tried to research a lot of it on my own but its quite a diverse topic with conflicting views.

1. What tests and scans are the most comprehensive for me to find out EXACTLY what is going on with the nerves, arteries and ligaments in that area? (iv heard a number mentioned…potter MRI, MNI, 3T MRI)
2. I live in England, can we send results for interpretation by more experienced doctors who know what to look for? I.e. get a scan done here but send it to America, France or where ever?
3. Has anybody had a decent resolution of these symptoms especially the sitting pain and penile related symptoms?
4. What doctor or clinic in England is the best for this good thorough diagnosis. Iv had CFS for years and know too well about the existence of quacks who bank up money doing test after test for no apparent reason. I would like advice from someone with genuine interest and knowledge in this field?
5. Lastly is there really any chance of resolving this? Has anybody genuinely gotten fully better or very close to. So can sit down with no pain, penis etc working fine again.
6. Has anybody been in this situation tried something and learned from it, that perhaps it didn’t work, to save me time, so I can look at other avenues. If so please shout up?
7. Do my symptoms sound typical of some kind of PN.
8. Have ant of the other men experienced these weird penile symptoms


I would love the chance to speak with someone about this who has an idea of what im going through.

Sorry for the lengthy post and thank you for any advice, I am very grateful.

[Meliora]

It sounds like something is causing you to experience pudendal nerve problems.....what that is, is the million dollar question for both of us. I have multiple issues as well and its hard to figure out what is what! If you don't mind me asking what neurological tests have been done (EMG, MRI brain & neck, lumbar puncture?). I hope you can get to the core of what is causing your issues. Pudendal nerve problems are so disheartening.

[Violet M]

Hopefully one of our UK members can direct you to a good physiotherapist -- currently we don't have many on our list but I know there are more in the UK. http://www.pudendalhope.info/node/60#UK_and_Ireland Also, the ones on the list might be able to direct you to a PT closer to you. PT is typically where a lot of people start with treatments because it's non-invasive and may help calm down any pelvic floor tension you are experiencing that might be causing the muscles to impinge on the nerves. There's also a list of docs on the website who could help you with a diagnosis and treatment. http://www.pudendalhope.info/node/57

Yes, lots of people with pudendal neuralgia get better and yes, your symptoms sound similar to what we hear a lot around here. Since you mentioned the itchy feeling going up your back you also will want to be evaluated for musculoskeletal problems such as sacro-iliac joint dysfunction. Physiotherapists or manual therapists should be able to help you with this although not all are trained in treating people with pudendal neuralgia so be careful that your therapist doesn't have you do things that could cause you further damage.

Violet

[helenlegs 11]

Hi healinfeelin,
Some of your symptoms do sound nerve related and then others don't, so trying a good pelvic physio is a great idea initially. Here is a list for those in the UK
http://www.pelvicphysiotherapy.com/manual-therapists.
A physio was the fiirst person to put me on the right track with my pelvic problems and many people here would say the same. If you do want a diagnosis for a doctor there are 4-5 PN aware consultants over here. They are listed on the home pages http://www.pudendalhope.info/node/57#UK
Although you can add Natasha Curren to that list she works along side Dr Baranowski in London (NHS) There is another guy in London too: Dr Ayazi at Chase Farm Hospital pain management.
I have no idea about the Dr Ayazi, just that he is PN aware. Here are his details http://www.bmihealthcare.co.uk/consulta ... p_id=47825
I have seen Dr Greenslade in Bristol but I believe that he now has quite a long waiting list on NHS. Although they may all have. They all do private consultations I believe although not sure about Dr Curren and Dr Ayazi.
Hope you get some answers soon.
Take care,
Helen

[healinfeelin]

It sounds like something is causing you to experience pudendal nerve problems.....what that is, is the million dollar question for both of us. I have multiple issues as well and its hard to figure out what is what! If you don't mind me asking what neurological tests have been done (EMG, MRI brain & neck, lumbar puncture?). I hope you can get to the core of what is causing your issues. Pudendal nerve problems are so disheartening.

Hello Meliora

Yes its very frustrating. So far I havent had any of those neurological tests done. Myself I also think of things like that, however my GP's dont seem to show much urgency. They think I just have prostatitis. If this is prostatitis its very painful and interupting of ones life. Would the tests you recommend show the problem? What is the best test to determine which part of the pelvic nerve/s are responsible for the pain?

Thank you for your reply.

[healinfeelin]

It sounds like something is causing you to experience pudendal nerve problems.....what that is, is the million dollar question for both of us. I have multiple issues as well and its hard to figure out what is what! If you don't mind me asking what neurological tests have been done (EMG, MRI brain & neck, lumbar puncture?). I hope you can get to the core of what is causing your issues. Pudendal nerve problems are so disheartening.

[healinfeelin]

Hopefully one of our UK members can direct you to a good physiotherapist -- currently we don't have many on our list but I know there are more in the UK. http://www.pudendalhope.info/node/60#UK_and_Ireland Also, the ones on the list might be able to direct you to a PT closer to you. PT is typically where a lot of people start with treatments because it's non-invasive and may help calm down any pelvic floor tension you are experiencing that might be causing the muscles to impinge on the nerves. There's also a list of docs on the website who could help you with a diagnosis and treatment. http://www.pudendalhope.info/node/57

Yes, lots of people with pudendal neuralgia get better and yes, your symptoms sound similar to what we hear a lot around here. Since you mentioned the itchy feeling going up your back you also will want to be evaluated for musculoskeletal problems such as sacro-iliac joint dysfunction. Physiotherapists or manual therapists should be able to help you with this although not all are trained in treating people with pudendal neuralgia so be careful that your therapist doesn't have you do things that could cause you further damage.

Violet

Hello Violet

Thankyou for your reply. I went to a physio on Saturday, first session, for some internal work. The pain was insane. They kept pushing my coxxycs area, and assured me the prostate was not really the problem. I had a huge flare afterwards with servere burn in the rectom and down the legs into feet. Its reassuring to hear people get better. this has been very sudden and im handling it really badly. Its making me feel almost tingly all over with a constant on-edge, depressed feeling, which feels more physical than mental. I dont see it often effecting people like that so im a bit worried. Can you recommend a really good scan or investigation. Which type is best to identify the problem? I have an MRI for neext friday of the lumber/sacral area. Is this a good place to start. Do I need to ask them to pay particular attention to the dorsal/perinium/pudendal nerves?

[healinfeelin]

Hi healinfeelin,
Some of your symptoms do sound nerve related and then others don't, so trying a good pelvic physio is a great idea initially. Here is a list for those in the UK
http://www.pelvicphysiotherapy.com/manual-therapists.
A physio was the fiirst person to put me on the right track with my pelvic problems and many people here would say the same. If you do want a diagnosis for a doctor there are 4-5 PN aware consultants over here. They are listed on the home pages http://www.pudendalhope.info/node/57#UK
Although you can add Natasha Curren to that list she works along side Dr Baranowski in London (NHS) There is another guy in London too: Dr Ayazi at Chase Farm Hospital pain management.
I have no idea about the Dr Ayazi, just that he is PN aware. Here are his details http://www.bmihealthcare.co.uk/consulta ... p_id=47825
I have seen Dr Greenslade in Bristol but I believe that he now has quite a long waiting list on NHS. Although they may all have. They all do private consultations I believe although not sure about Dr Curren and Dr Ayazi.
Hope you get some answers soon.
Take care,
Helen

Hi Helen

Thanks for reply. Youll see on my other posts to the other ladies, that i have seen a physio on saturday who did internal work. The pain was just about unbarable. I have an MRI next Friday, Im hoping this will shed some light, but from what iv seen around the net, Im a little doubtful. Have you had any relief from anything you have tried?
Im also from the North east.

[helenlegs 11]

Hi again healin,
Unfortunately an ordinary MRI scan will not show any nerves. I would expect that they are doing this scan to rule out any spinal pathology?? did they say?
Is this something you are paying for btw, even if through your insurance? because if you are hoping to see actual nerve problems you will be wasting your money. I'm not saying don't have this imaging done, as it can help rule other problems out, which is necessary and fairly easy to do with MRI.
The fact that you have responded so strongly to the internal work is a good pointer to there being a problem with those muscles. That must be something to rule in . It may even be a case that once they are released sufficiently you will be well on the road to recovery, although you will need to let the physio know about the level of pain you endured (if they were unaware) and the flare, later.
Do you think there has been any improvement from the physio after the flare subsided? It is always difficult to tell from one session, are there more arranged?
You mentioned that the 'pain was insane' which I can totally relate to. My problem is at piriformis muscle level, and work there has been excruciating at times, all this does is demonstrate that there is a problem there. Hopefully a few more sessions will see progress for you. Was this physio PN or pelvic nerve pain aware? I would be very interested to know about them if so.
As for 'a really good scan' or 'investigation' over here, there is UMEdiagnostics http://www.umediagnostics.com/index.php/news
I had a scan done there over 2 years ago but they have updated their equipment now and do have a 3Telsa scanner which gives a better definition to the imaging. I have read through the bumf from them and they do not say that this 3T one is used for neurography, although they do offer neurological imaging. http://www.umediagnostics.com/index.php ... al-imaging. This sounds great BUT there is no guarantee that anything will be seen as this type of imaging is still in it's infancy.
If you have insurance to cover it or can afford it without a problem, it may be something to consider, just don't pin all of your hopes on something showing up to explain your nerve pain symptoms.
Another option is Dr Filler (American neurosurgeon) who holds a clinic in London every few months. http://www.nervemed.com/ He offers his patented MRN scans with a clinical examination and diagnostic report. He is a very knowledgeable doctor, although he is noted for 'favouring' a piriformis nerve related problem as this seems to be more of a speciality of his. I doubt he will take any UK insurance (best to check that though) and his costs are high , although negotiable I have been told. I have had a diagnosis from Dr Filler, as in those days I wasn't aware of anyone else (they all wanted to concentrate on my spine, but I have no nerve impingement showing) I have got to say that I might as well not have bothered as no one up here seems to trust his diagnosis. The only reason being, his nationality!?! I always thought that one neurosurgeon would have a certain respect for another. . . . .
For a good clinical examination there are the doctors from the home pages and the 2 additions on my former post. PLEASE, do not even bother going to anyone else. None of these doctors rate the imaging available at the moment. Dr Greenslade didn't even look at mine although he did want to see my normal spine MRI's to rule any spinal stenosis. (which he did )
I am going to see a urogynaecologist at the RVI (Newcastle) on Tuesday but if he is PN (and other pelvic nerve) aware he will be the first doctor up here that I have encountered. I will let you know

It is wonderful (sorry, probably not for you) to know someone more local with possible pelvic nerve problems. Don't worry, I have made all the mistakes, so at least I will be able to guide you as to what NOT to do healin'
Are you taking any medication at the moment btw? The home page has advice about this. I would definitely take a look as you are describing some symptoms that could be related to a central sensitisation. Having a good pharmaceutical regime can help a lot, especially initially. It sometimes can take some experimentation to find what suits but as well as helping the nerve pain symptoms and calming things down this will also help any mounting central sensitisation problems too.
As you are not coping with this too well at the moment it can only be to your advantage to get some additional pain management strategies to run along side other conventional treatments. I successfully (for once) got a referral from my GP for pain management recently. I have had one initial phone 'consultation' which basically confirmed who I was and got me an actual consultation with a pain consultant (last week) I chose to have that by phone too, mainly because I find it far more comfortable talking about my problems when not face to face (silly, but there it is) The doctor is lining some pain management techniques up for me (no clue what yet, or when) with a view to 'stopping those nerves from firing'. Which will be lovely
I had to ask for this help (my GP has not been helpful) and would advise you to do the same, I feel that a multidisciplinary approach is definitely the best plan and the sooner in place the better.
Take care,
Helen

[Violet M]

Its making me feel almost tingly all over with a constant on-edge, depressed feeling, which feels more physical than mental. I dont see it often effecting people like that so im a bit worried. Can you recommend a really good scan or investigation. Which type is best to identify the problem? I have an MRI for neext friday of the lumber/sacral area. Is this a good place to start. Do I need to ask them to pay particular attention to the dorsal/perinium/pudendal nerves?

I understand what you are feeling because I was totally on edge and depressed during the worst of this journey. I could hardly sleep, eat, watch TV, read --- really, there was no pleasure in life because the awful sensations were completely overwhelming.

My internal PT work was incredibly painful too. I had a pain flare-up for a week afterward. Did the PT press along the course of the pudendal nerves to see if that elicited more pain?

Sorry, I can't give you advice on scans in the UK but it looks like Helen has given you some good info. Even if your scan comes back normal that will not mean you don't have pudendal neuralgia or PNE. Imaging tests are not 100% accurate in ruling them out. One of the purposes of the MRI is to rule out any obvious impingements on the nerve such as a tumor. You may want to ask them to check for tarlov cysts because these can cause symptoms similar to PNE. They will probably also be looking for things like cauda equina or impingements on the sacral nerve roots.

Violet