Health Organization for Pudendal Education

Hello people!
Ive just wanted to ask about your opinion about diagnostic validity od 3TESLA MRI of pelvis with standard protocol 3 D for PN.
Little of my history. I have standard symptoms of pudendal neuralgia. It all started long ago as some minor sport injury (Ive dunked in basketball and feel intense perineal pain which lasted about half an hour and I couldnt walk that day easily, it was eight years ago), I was playing basketball my whole life, and continued.
I had occasional pain in perineum bit it was menageable. It was after hard physical exercise and few days after than it would decrease to lower level which didmt bother me on daily basis.
About 8 years after, I had to for purpose of my job (it was therapeutic riding) learn to ride a horse, and after couple of riding classes my symptoms of pain in perineum icreased 100percent, I couldnt sit at all, bend, stand for a long period, sex was painful especially ejaculation, I had all the symptoms of pudendal neuralgia of which term Ive hard shortly after that for the first time.
I have those symptoms for 4 months with high intensity of burning, itching pain in perineum for 24hours a day.

I went to a orthoped, urolog and neurologist for help.
Urologic problems such are prosthatitis and avery other were excluded.
Ortophed didnt found anything with his rough tests and examination.

Neurologist after my story did a SSEP test and found some lesions and abnormalities on my pudendal nerve and tibialis.
After that I did MRI (1.5 T) of lumbo sacral spine which found lots of abnormalities:
They found degeneration of discs L4-L5 of spine and L5-S1 which are very serious and resulting in protrusion in spinal canal. (My english is bad and its hard to translate this from another language). Also they found lumbalization od S1 sacrum and other degenrations.
I also did an MRI of PELVIS (3 TESLA), with standard procedure (not neurography) and in pelvis they found no pathological processes along pudendal nerve lovations tissue and no other patology.

My question is, is this clinical picture enough to diagnose PUDENDAL NEURALGY without pelvis MRI abnormalities, or are there other diagnostical solutions?
Is there a posibility that L5-S1 degeneration is cause of perineal pain and PN symptoms? (Altough pudendal nerve roots from S2-S4).
Is there anyone with similar story and what are the next steps in your opinion?

How to handle.full time job with this teribble pain?
I know Im asking to much questions for this topic, so lets back to just diagnostic theme... Of significance of MRI to PN diagnosis.
Thank you.

I also have involuntary and very painful erections during night and morning which increase a level of my perineal pain a lot a day after... I m not sitting at all for about 3 weeks because even for a minute it becomes teribbly painful...
Also Ive got numbness in my right leg (upper of knee) for the same period of 3 weeks.
Im out of job for a 3 weeks and symtomps even after complete rest didnt decresed.
Im starting to continue with job next week and Im not sure coulde handle it because after long standing my legs start to be pai ful and feet too, and after that pelvic musles inflame and it all becomes very hard to handle.

Is there any chance that by full time working I do IRREVERSIBLE damage to my nerves?

Hi,

Welcome to the forum. I'm sorry to hear you are having such bad pain.

Regarding the MRI -- it is not 100% accurate for a diagnosis of what is causing your perineal pain. Some people have MRI's that look normal and they have bad pain, but other people have MRI's that look bad and they don't have pain. An MRI might give you some valuable information but it might not.

I can't say for sure if the protrusion at S1 is your problem. The question is whether it is impinging on a nerve root. There is a guy named John Carter on this forum who has a similar problem I think -- with pathology at S1. Have you tried a sacral root nerve block at S1 to see if it takes away your pain temporarily? An MRI won't necessarily show certain musculoskeletal problems such as strained ligaments or sacroiliac joint dysfunction. Is it possible for you to see a manual therapist or a physical therapist who specializes in the pelvis to have some of these things checked out? My doctors were not able to diagnose those problems for me. It was a physical therapist who figured it out.

It's difficult to answer your question about irreversible nerve damage because I don't know for sure what is causing your pain. For a typical patient with pudendal nerve entrapment with ligaments compressing the nerve, my understanding is that it is best to get it taken care of sooner rather than later, but sitting is more of a problem than standing. But many people with PN who try to stand too much develop problems in their feet and legs. So, it's not really a permanent solution.

I had numbess in my leg from the piriformis muscle going into spasm and pressing on the sciatic nerve. I also had burning from the obturator internus muscle being in spasm. It was all related to pelvic misalignment, sacroiliac joint dysfunction, and strained ligaments from exercise.

You have lots of options but sometimes there is some trial and error until you find what works for you. With your history of heavy exercise (basketball and horseback riding) it seems important to see a manual therapist or physical therapist who specializes in the pelvis -- preferably someone who is knowledgeable about pudendal neuralgia. Also, there are some medications that might dampen the symptoms of painful night-time erections and help you sleep better. Some of the medications that might help are antidepressants (tricyclics or SSRI's,) clonazepam, and suboxone. Some people say gabapentin or lyrica help the burning pain.

Violet

Thank you Violet again.
Yes I firs have to finish my diagnostic examination, but as I writed Ive excluded all other traditional states connected with descripted symptoms...
Its just a question whic nerves are problem and where it starts...

Ill try all of your suggestions... Finding PT and relax muscles with medication.
Thx

My general practitioner said today that all of my PN symptoms are related with LS spine disc degeneration and its neurosergeon problem now.

Hopefully the neurosurgeon will be able to confirm what your GP is saying by doing some tests that aren't too invasive before you have any major procedures. Please let us know how it goes for you.

Violet

Thought the Pudendal was formed from S1-S3, and not L5...though pain, when wound up, might generalize and make it hard to determine exact origin.

If not already, recommend you get familiar with the PN Nantes criteria...and agree with Violet before consider something invasive like surgery.

3T was valid for me, and equated to what was seen at surgery.

Bob

I think pudendal is typically S2,3, and 4 but if I remember correctly, John Carter posted something awhile back about possible variations that include S1.

Violet

RJR if you rember what did your 3T mri of the pelvis exactly show?