Can Pudendal Neuralgia start like this? In pain for 6 months

[Grifin]

Hello everyone...

I have all kinds of symptoms that developed within a few months and lead me to look up more about Pudendal Neuralgia. I am still puzzled if Pudendal Neuralgia actually develops in the way that I will describe in this forum post.

So it all started with a surreal experience inside my penis. First I just had some sharp stinging pain in my glans, but a week later while having an erection a vibrating shockwave went through my shaft from top to base, followed by what I think was an inflammatory sensation (like buzzing, if something was moving quickly around the area and length where the shockwave had been).

I went to a Urologist but he couldn't make any sense of it. I could only explain what I felt, but could not tell the exact location other than inside my penis shaft. It felt like the shockwave went through the center, but the Urologist thought it would be more likely through the urethra, but still could not explain what the shockwave sensation could have been (if you read this and have an idea, please leave a comment).

In this phase, the buzzing developed into a continuous pain what was still manageable by taking paracetamol. But a few weeks later the pain became excruciating and I developed also a pain in my perineum and sitting became very uncomfortable. I was given Gabapentin for at nighttime and this seemed to help reduce the pain to a level that I could fall asleep. A CT scan was made to rule out stones and although my urinalysis showed no bacteria I was prescribed antibiotics for possible prostatitis.

In the period that followed, I got pain in the rectum and tailbone and I felt some kind of electric current sensation running a little left from my perineum to the anus.

The pain became unmanageable and I was given Tramadol and Amitriptyline and experimented with various doses for pain relief. I had a period where I could not find relief and have seriously thought about suicide. Never thought life could be this miserably...

I did a 2nd opinion with another Urologist and he thought of neuritis if it is nerve related or urethral syndrome if related to the urethra.

I have most relief when lying down on my back or sitting on a toilet seat. I have no pain when urinating. Pain is minimal upon waking and increases during the day.

I am extremely fatigued living months like this now. The Urologist got me on the waiting list for seeing a neurologist.

The last few days, I felt a little less pain after months of struggle. Hopefully, that is some good news.

Some questions:

Can Pudendal Neuralgia start like this in the way my symptoms and pain progressed?

What are important questions to ask when seeing a neurologist?

Would a neurologist be able to use pressure points to find out if this is nerve related?

Any other advice you can give me?

Thank you in advance for reading and also for any replies,

Grifin

[janetm2]

Welcome Grifin,
So sorry for your pain and struggles. Your symptoms do sound like PN but then PN symptoms do overlap with other conditions. The things I noticed were the nerve sounding issues (electric current/shockwave) and the PN symptoms of perineum pain, uretha issues, rectal pain, and pain relief when sitting on toilet. The neurologist should be able to do an EMG on the pudendal nerve to see if it is a problem. We usually suggest a session with a PN knowledgeable PT (see list off homepage) that may help with diagnosis and can help with muscle issues. Also, I would review the FAQs off the homepage for ways to proceed and rule out other issues while diagnosing possible PN. Best of luck.
Janet

[Grifin]

Thank you Janet!

After posting my first post and waiting for the appointment with the neurologist I started a couple of new exercises like diaphragmatic breathing and stretching. Also, re-read "the Art of Happiness" by the Dalai Lama and Howard Cutler for mental support.

A little good news is that the pain has subsided to a level where I do not have to take strong painkillers at the moment. It is more of a continuous discomfort level now. I can sit again for quite a while with a special pillow.

The neurologist did an x-ray on my spine. He did see some narrowing, but he was quite sure this was not the cause of my problems.
He can refer me for an EMG test. I read on this forum this can be quite painful (Oh nooo...).

Is it still a good idea to do an EMG test when my symptoms are improving?

And in case my symptoms are not directly caused by pudendal nerve irritation, can an EMG cause irritation on the nerve?

or is it safe enough to just do the EMG test anyway?

[janetm2]

Sorry I am not that knowledgeable about the EMG. I haven't had one yet, but it may the next thing for me. I am hoping if I do have to have it they do it before my doctor takes away my oxycodone! I am using the oxycodone nightly and have a few others for some daytime pains or use before painful tests.
You could put off the EMG until you get more information about it. Especially as your feeling better, that is great news. I was hoping Violet would respond as she is a great source of information and may know about the EMG.
Janet

[Violet M]

Hi Grifin,

I've never heard of an EMG causing permanent damage or worsening of pudendal neuralgia but I guess there could be a first for everything -- especially given the way your pain started with the surreal shocks. If you are super sensitive theoretically it could cause your nervous system to over-react and set up a cycle of pain signals to your brain. Since EMG's are purely for diagnostic purposes and are not therapeutic, I think it would make sense to postpone it since you are getting better -- that is if you are progressing enough to where you don't feel like you need the test for diagnostic purposes and you aren't still searching for treatment options based on a specific diagnosis.

Violet

[Grifin]

Thanks Violet,

I am definitely progressing at the moment. Especially when comparing to two months ago.

However, I never got a diagnosis based on test results and I have no idea why I suddenly have this progress.

The areas where I felt a lot of pain, feel sensitive now. Especially in the penis. Also dealing with erectile dysfunction.
Mentally I am still a wreck... probably also because I do not know what I actually have and keep worrying if this can be treated to a level where I feel okay again.

Tough call what to do with the EMG..

Grifin

[Violet M]

Well, I am the kind of person who likes more data and information so personally I went for the EMG. The chances of getting worse from an EMG are extremely low but you should only do it if you feel it's necessary for your situation.

Violet

[mary jane]

Thanks Violet,

I am definitely progressing at the moment. Especially when comparing to two months ago.

However, I never got a diagnosis based on test results and I have no idea why I suddenly have this progress.

The areas where I felt a lot of pain, feel sensitive now. Especially in the penis. Also dealing with erectile dysfunction.
Mentally I am still a wreck... probably also because I do not know what I actually have and keep worrying if this can be treated to a level where I feel okay again.

Tough call what to do with the EMG..

Grifin

can you update us please? did it go away ?