I fear that I may have PN.....desperate for some help

[lucky]

Hello all,


I am new to this website, but can immediately sympathize with many of the users who've posted about their fight with PN. Hopefully by sharing some of my symptoms, you all can give me a little direction as to what I may have. To be honest, I am not very well read with regards to PN (or any conditions for that matter), but am desperately trying to absorb as much info as possible to get an idea of what I may have. It has been very difficult having a normal life, and I must admit that I can see how someone would contemplate suicide. These symptoms have been truly debilitating, challenging my fortitude and sanity.
My symptoms:

Urinary problems
-Frequent urination: every 20-25min. I wake up about 3 times a night to use bathroom.
-Difficulty urinating; I often have to focus in order to begin stream.
- extremely weak stream
-Urgency; about every 20-25 min I feel a strong urge to urinate, and when I finally do, I feel as though I cannot empty bladder.
-It feels as though urinate is trapped in my penis,
-I dribble uncontrollably. I often find my underwear soaked with urine around where my penis is.
-Of course, alcohol and caffeine intensify these symptoms.


Bowel Problems
- Although I would not say that I am constipated, in order for me to defecate, I must push and strain until I feel pain.
- Feces comes out fragmented
- I often find blood

Perineal Discomfort
-After sitting for about 20-25 min, I begin to feel a burning sensation in the perineal area, along with burning on the glutes
-Discomfort in the perineum is always accompanied with an urgency to urinate.
-Cushions do not seem to offer any relief.
-I have noticed that when sitting on steps inside of jacuzzi, discomfort subsides.
-Again, I would not describe the sensation and pain, but rather a piercing burn...perhaps mixed with numbness.

Sexual Dysfunction
-Although I can get an erection,it is difficult to maintain.
-My libido is shot. I have almost no desire to have sex and even if I did, am too embarrassed, fearing that my genital area reeks of urine.
-I have absolutely no pain in genitals.

Nerves
- For almost 3 years, I have noticeably less sensation in left foot than right. Feels like left foot is constantly asleep/numb
-Left foot and leg feel significantly strong. My left leg begins to shake violently when I try to balance on it.



Medical history

- Began feeling symptoms about 2 years ago, but did not pay it much attention until summer of 2012 when the symptoms above developed.
- Sought medical attention in November of 2013. Was given anti-biotics for "non-bacterial chronic prostatitis", which proved to be ineffective.
- Went to three more urologists who also prescribed anti-biotics....to bo avail.
- Visited one last urologist who concluded that my prostatitis was healthy (not swollen). He performed a cystoscopy, but found that everything was normal.Concluded that what I had was "Pelvic Floor Dysfunction", which was a result of high stress.
- Visited a physical therapist who specializes in PFD, did bio-feedback, she concluded that my pelvic muscles were tight, but not incredibly tight. On a scale of 1-10, with 3 being normal relaxation state, I was at 4.5-5.
- She performed massage on my perineal area and around pelvic, but I did not feel pain as much as just normal discomfort that any normal person would have. She touched where pudendal nerve was, and I could not remember feeling "pain". Again, the "pain" I felt was mostly, I believe, due to the pressure she was putting on the bones(?)
- Have had MRI of pelvis, ultrasound, and cystoscopy. Nothing else.

Questions
- What could these symptoms be a result of?
- What tests/treatments should I seek?
- Which doctors can diagnose me with something? Where do I start?
- Could it be that I may have some kind of neurological problem/hernia/cyst/syndrome that isn't painful?
- Why is it that pudendal nerve entrapment isn't more widely treated, and why haven't I read of many successful treatments? I remember coming across some posts saying that it may be some kind of myth and that the root of many symptoms is actually something else that goes untreated.

Background info

-I am a 22 year old male
-Played sports 3-4 times a week
-Started lifting weights intensely about 2 years ago (about when symptoms became much, much worse), and stopped about a month ago
-For the most part, I stay at home all day and try to do some stretching to see if it'll help, but nothing no success thus far.
-Unable to work, study, nor concentrate on almost anything due to constant need to urinate.


I am sure that many others have asked for help as well, perhaps even citing many of the same symptoms, but this problem has truly ruined my life and I do not really know where to turn. I appreciate any help that comes my way. Thank you.

[stephanies]

Hello Lucky,

Welcome to the forum. Some of your symptoms do sound like they could be related to the PN. Is there another doctor you can consult with with regard to your symptoms? There are many great articles on this site that explain the PN problem that you can take to a doctor to introduce the problem. Maybe your PT can point you in the direction of a doctor that can help. There is a list of doctors here on the forum that are familiar with PN, maybe one of them is near you? Have you had any imaging done like an MRI of the pelvis or spine?

Many of us here have experienced the same emotions that you express - frustration, loss of quality of life, and many others . It is important to remember that there are likely things that can help you improve your situation.

Sincerely,
Stephanies

[lucky]

Stephanies,



I live in South Florida and have been to a PT here, but she did not seem too confident of her knowledge of PN. I have had an MRI of my pelvis, but the urologist dismissed any abnormalities. I read that when looking for a hernia, it is best to sometimes have an ultrasound performed on you while standing. Apparently, it is difficult to detect when laying down because the hernia flattens/tucks into the abdomen.


Any thoughts? I'm scheduling an appointment with a neurosurgeon to see if he can find anything.

[stephanies]

Lucky,

There are a few PTs listed on this site that are PN aware. You can check the full list if you go to the home page and click on List of PTs. I just looked through and saw one in Orlando (I know that is not south) and several others. I don't know anything about hernias, but possibly another forum member will have some information.

Sincerely,
Stephanies

[janetm2]

There is a thread by Donstore explaining hernias and how they need to diagnose, etc. Sorry I do not know and probably cannot put a reference via my nook but maybe search on his posts.
Janet

[lucky]

Update: went to hernia surgeon today, ruled out possible hernia.



After explaining my symptoms, he ensured me that it must be a neurological problem and that I should have MRI of my vertebrate immediately.




Any thoughst?

[HerMajesty]

It does sound likely to be a spinal problem, seeing as both pelvis and legs / feet are affected.
I think neuroconductive studies on your legs / feet would also be useful, as they are easy to obtain through any neurologist and will let you know if you have sensory and/or motor nerve abnormalities. The same type of test on the pudendal nerve is more difficult to access.
Your symptoms sound mostly related to motor nerves, but involvement of sensory nerves does not necessarily mean pain. I had very reduced sensation in my lower legs and feet, and did not know it. An easy way to test this is to take a pin and push the point gently against various skin surfaces on your lower extremities, not hard enough to break the skin or leave a mark, but hard enough so that if you were to try the same thing on your arm or hand, it would feel "sharp". If you have a change in sensation, areas such as the tops of your feet or your calves might feel this contact as "dull" rather than sharp, much like being touched with the blunt end of a toothpick.

[lucky]

HerMajesty,



I went to a neurologist today, and she performed the pin test (touched skin with safety pin). She requested that I get an EMG and an MRI of my lumbar. It's shocking to me that she did not discover anything; as I write this, my left foot and left hand are significantly number than the right.


Do you think an EMG and an MRI of the spine will pinpoint whatever condition I may have? And if nothing is found, what is the next step?


Thank you all for your help.



EDIT: Forgot to mention, but she prescribed 10mg of amitriptyline. Don't know if I should take it.

[ladybird]

Hi Lucky - Just to say I am new here too and I hope you find some answers here. I'll put you on my prayer list. xx

[HerMajesty]

That's one of the 1st meds I tried and it helped some but i stopped because i didn't like the side effects. Not sure it's a great idea to take it when you are in no pain and have no diagnosis yet - sometimes doctors seem to have the need to write an rx so they felt like they did something.
The EMG will almost certainly show something. With hand involvement too, next step might be a brain scan / EEG to rule out any central neuro condition, and maybe a fancier neuroconductive study like the SSEP (somatosensory evoked potential).
One tip when trying to get diagnosed: I had tarlov cyst disease (I don't know whether to say i "had" or "have" it really, since my cysts were surgically repaired). They have similar sysmptoms, including potential problems further up such as hand problems because of changes in CSF pressure. It's probably not what you have but should be ruled out. Tarlov cysts are generally in the sacrum which can be partially seen on a pelvic or lumbar MRI. The problem is, many doctors consider them "artifact" and do not believe they can cause pain (long story as to why). So, the only way to rule them out is to make sure you have an MRI which shows at least S2 and S3, and leave specific instructions for the radiologist, "please note any tarlov cysts", then get your own copy of the report. Do not be satisfied that this diagnosis is ruled out until you know your S2 and S3 were seen on an MRI image and tarlov (aka perineural or meningeal) cysts were not seen.