Please help me with diagnosis

[hopeformynerves]

Hi everyone,

Please help me with differential diagnosis.
I am male, 45, typical height and normal weight (Body Mass Index = 24).

The pain has started about 4 months ago. A very strong burning pain under pubic area. Need to urinate more frequently, including nighttime.
Urologists said that this is a chronic prostatitis flare and started with antibiotics.
However, pain was and is very different from prostate pain. With prostate issues, I felt the pain in my inner thigh and perineum. Now the pain is under pubic area. Also pain from prostatitis was mild and easily managed with over-the-counter painkillers.
After 50 days of different antibiotics, urologists gave up and sent me to neurologists.

Neurologists are saying, that I have the pudendal nerve entrapment, or irritation, or inflammation. They call it the pudendal neuralgia.

I’m on tramadol now, and need to increase the dosage. Pain is so severe, that I am not able to work, even under tramadol. Because of severe pain, neurologists think that this is another confirmation for neurological pain. Meaning that irritated bladder cannot produce such amount of pain (similar to stomach ulcer). The same with prostate, they think that prostate cannot produce such amount of pain.

However, prescribed medicine (tricyclic antidepressant in small dosage and pregabalin 150*2) do not help, after 10 days of treatment.
I do not see any improvements, unfortunately. I understand, that probably I need to give it more time.

Only one thing is helping me, this is anti-inflammatory suppository of certain brand. Other brands help too, but not so much. But this stuff (anti-inflammatory drug) is extremely harmful and you can’t use it longterm. I use it only to sleep, it helps to kill the pain completely for 7-8 hours. This is my only rescue from constant pain.

Tramadol also helps, but it seems that my brain is getting used to it, and requires larger and laerge dosage to kill the pain (now I am on 400mg daily, max amount).

Could it be:

• Painful bladder syndrome?
  Or pudendal neuralgia?
  Colon issues?
  Pelvic floor disorder (stretching and walking seem to help, but not much)

Some diagnostic results:

• Pelvic MRI = no issues.
  Ultrasound of bladder, prostate, kidneys, testicles = no issues.
  Spine MRIs (L-S, S) = no issues.

Currently waiting for electroneuraghy of pudendal nerve and for doppler of Altcock channel.
Unfortunately, I will have to wait for long time for these procedures.

I just want to stop the pain, it is killing me inside. The level of pain is incredible.
If you are not under tramadol, you will scream, and cry, it is so severe.
Please, please help me to understand what I can do to diagnose the condition which gives me so much pain.

[frigator]

Welcome to the forum. I am not an expert and there are many more around here that know a lot more than I do. But it sounds like you may have PN. Where is your pain exactly? Can you sit without pain? Does the pain keep you up at night. You may end up getting a nerve block to see if the pudendal nerve is the culprit.

I understand the pain...its terrible and I am living with it too. I would try to get a referral to a pain management doctor quick so you can get something than could help. I am on oxycodone. Consider a nerve medicine like Lyrica or Gabapentin. Ice is my best friend for pain. I ice everyday and find it essential for travel or driving.

May I ask where you are located? There are not that many PN doctors out there for men. The forum seems a little slow lately, not many posters, but this place is a wealth of information. I have had mine for a year and still dont have a definitive diagnosis. But am traveling to Baltimore tues for a guided nerve block for diagnostic purposes.

[frigator]

Oh forgot to add, is that test you are getting, is it a nerve conduction test? If so I found that very painful. You may consider a nerve block instead to help with this diagnosis. Dont accept everything the doctor's say cause some of them don't know.

[stephanies]

I agree with frigator, the block will help you determine if your pain is from the PN, but, if positive, it likely won’t give you information as to why you are in pain. The EMG can be quite painful and cause even a flare in pain, and it is my understanding most doctors no longer use it because it is not reliable. There is no way to determine the “ normal” reading of people without PN pain and some people get false positives and other people get negative results, but are in severe pain. I recommend a second opinion from a neurosurgeon about your lumbar and sacral MRIs, since you have them, as well as evaluation by a pelvic physical therapist.

Stephanies