Health Organization for Pudendal Education

Hi - I don't mean IBS pain, or pain with going to the bathroom, just burning, and a gnawing feeling below my belly button. I am not constipated - very rare for me.
I'm sure it's all part of the burning symptoms, I've had a CT, and pelvic ultrasound, all normal, and many of pelvic exams....

Just wondering if this is common? I see pain med doc monday, I need something for this burning everywhere else, something I can take through out the day.
I hope I will not be to fuzzy to drive etc.
I want to shut this nerve off!!!

Debbie

Yes, left lower quadrant, almost on top of the pubic bone. It burns when my PN flares.

deBBieW wrote:Hi - I don't mean IBS pain, or pain with going to the bathroom, just burning, and a gnawing feeling below my belly button. I am not constipated - very rare for me.
I'm sure it's all part of the burning symptoms, I've had a CT, and pelvic ultrasound, all normal, and many of pelvic exams....

Just wondering if this is common? I see pain med doc monday, I need something for this burning everywhere else, something I can take through out the day.
I hope I will not be to fuzzy to drive etc.
I want to shut this nerve off!!!

Debbie

I am quite sure it is part of the same PN issues causing your other burning

I have numbness, not burning, but the numbing INCLUDES the lower abdomen..from the belly button and below, so I am sure the PN has sensory responsibility for that area also

The pudendal nerve does not innervate the lower abdomen, I am pretty sure it is the iliohypogastric nerve if there is suprapubic pain.

I agree with Calluna. Not the PN. I also have this burning/pulling/pinching type of pain just under my bellybutton, travelling distally to the top of the pubic bone. I also supspect an iliohypogastric nerve, but don't know for sure.

yes, you are both correct...the iliohypogastric nerve innervates the lower abdomen and pubic areas

great, guess I have 2 nerves that have problems, fff..

does anyone know if it is common to have pathology in both the PN nerve and the iliohypogastric nerve at the same time

starting to think I might have MS..no confidence I have a complete diagnosis..

did have both sacral and lumbar mri's which were negative so issue distal from spine

perhaps the treatment wth neurontin is the same anyway..scared, and feeling horrible..

Could this be the infamous "cross-nerve talking"? So would resolution of the PN pain also resolve the "cross-talk" pain of the iliogastric nerve?

Well, I hate to be the bearer of bad news, but it appears to be less common if you JUST have PN. I've noticed many of us have other issues (neurological, musculosketal) which aren't relieved by PN decompression. I'm embarrassed to admit how foolishly naive I was to actually think that PN surgery would correct EVERYTHING.
I thought that PN(E) was the root of all evil and by having the surgery, all of my other problems would magically disappear. I really believed in nerve cross talk (still a bit on the fence with this) and the removal of exasperating factors (i.e. the PN). I blamed PNE for everything! I feel like such an ass.
I've achieved significant relief with my PN symptoms but having that adquately addressed did not cure my ilioinguinals, iliohypogastrics, PS, SIJD, possible obturator entrapment,
adductor tendinosis, chronically tight leg muscles, etc..., etc ...
And who knew there could be SO MANY reasons for sitting pain?!?!?!

Wow, I'm learning now.... so help me out here, if it's PN pain, and a ilio whichever nerve, who diagnoses that and how do you know which is which?
For patients that have seen Dr. Conway, isn't he a specialist in that area? How does he know which nerve is causing what?

I'm sure there are nerve blocks for this and that nerve. I've never had abdominal surgery of any type, so there is no scar tissue from surgery to get in the way.
But my vaginal pain started first, and then a few months later I had left foot (top of foot) pain, and this summer abdominal pain, spasms, gnawing and burning.

The latest doc I went to (uro/gyno) says yes the P nerve can cause abdominal pain, but she has had so few patients with this, I wonder if she really knows.
And she said I am the most severe of any she has had - my mind is spinning from this.

And I can't still figure out what causes flares for me - I can be so/so all day, and go to bed, and wham have abdominal pain during the night? Anyone else have that?
I would think that's when the nerve should calm down a bit. Last night I had to take a vicodin around 1am, couldn't stand it anymore.
I don't even know how to explain all of this to doctors anymore, the list of pains is so long - and yet it's all connected.

Debbie

Dr. Conways associate, Dr. Winefield does EMG testing on the PN, ilioinguinal and obturator nerves. Not sure if they do it for other nerves.
You're UroGyn is incorrect - abdominal pain is not a result of the PN.

calluna wrote:The pudendal nerve does not innervate the lower abdomen, I am pretty sure it is the iliohypogastric nerve if there is suprapubic pain.

This is kinda the point here: separate nerves. So, if someone can have PN(E) ... why not other pelvic nerves?

deBBieW wrote:I'm sure there are nerve blocks for this and that nerve.

Yes, you're absolutely correct!

deBBieW wrote:And I can't still figure out what causes flares for me - I can be so/so all day, and go to bed, and wham have abdominal pain during the night? Anyone else have that?I would think that's when the nerve should calm down a bit.

Feeling worse late afternoon/evenings isn't uncommon at all. Everything for me always feels worse as the day goes on. I can speculate as to why, but don't really know the reason. Could you please explain a little more about the pain under your bellybutton? Does it feel localized to one spot? Does it feel like nerve pain or something else?
I'm so sorry you're having such a hard time, Debbie! I hope you find some answers soon!