Health Organization for Pudendal Education

lot of people here with PN issues that can be traced to some event..injury, surgery, etc. and have very localized symptoms making for a relatively easy diagnosis

there are others who do not have or know of a precipitating cause and also have other nerve issues making diagnosis more confusing

for those who do not know the cause of there PN issues, and also have nerve issues progressed beyond the PN distribution:
has anybody ever been subsequently diagnosed with a more general nerve disease like MS or something else???

thanks all!!

Karyn,
The pain is NOT associated with eating, digesting etc., no constipation problems for me at all. It usually is later in the day, or middle of the night... sort of a burning, aching, gnawing feeling, sometimes twisting. I have had CT scan and pelvic ultrasound. There was a cyst on my ovary, but now that has shrunk and gone away, nothing to worry about.
Can just those illio nerves cause vaginal soreness, or is it usually a combination of the pudendal and then the illio nerves get aggravated too? And again, I've never had any surgeries to mess things up.
Of course I have some rectal pain, on and off, again not associated with going to the bathroom, so is it crosstalk, or referred pain? I'll have to look and see where those illio nerves are in relation to the PN.
Trying to figure all of this out is a full time job, I'm sure you have a file a few inches thick with info, and articles etc.

Debbie

Hi Deb,
No, I'm not suggesting in the least that your abdominal pain is related to digestion or constipation. That was a battle I fought for YEARS with PCP's, Colorectal Specialists and Gastrointestinal Specialist. I'm like: "No! It's not my digestive system, people! No, I'm NOT lactose interolant, or glutun intolerant ..." And yet, I was made to endure colonoscopies, Upper GI's, Lower GI's, and more things shoved up my poop shoot than I can to relay. Of course, all testing came back normal, and my abdominal symptoms were written off as Visceral Hypersensitivity.

deBBieW wrote: It usually is later in the day, or middle of the night... sort of a burning, aching, gnawing feeling, sometimes twisting.

OK - I'm just trying to be clear. Is this throughout your entire lower abdomen or localized to one area? Is it contant throughout the day? Does it feel better when standing? Does this particular symptom feel worse when lying down?
For the most part, I can feel the path of these nerves. It's not my entire lower abdomen. For the ilioinguinals:
Soreness in the area of L-1
Burning, sharp pinching, barbed-razor wire on either side of the sacrum
Wraps around posterior iliac crest to anterior iliac crest
Travels distally down abdominal wall (front, inside of hips) into creases of legs, groin and perineum
Not positive what the other abdominal nerve pain is. Could be a iliohypogastric nerve? One of the cutaneous nerves? Obturator nerve? Genitofemoral nerve? Sigh .....

deBBieW wrote:Of course I have some rectal pain, on and off, again not associated with going to the bathroom, so is it crosstalk, or referred pain?

I'm not totally buying into "nerve cross talk". Maybe where spinal nerves are involved, but not the peripherals.
I'm also able to determine what "referred pain" feels like. For example, The pain going from under my belly button to the top of my pubic bone is very specific. I can move my finger to either side of this "line" and feel nothing more than a bruised tenderness. To me, that's referred pain. Definitely not the same pain a half an inch away.

deBBieW wrote:Trying to figure all of this out is a full time job

Oh, I know it! There's nothing more I'd like than to hand in my resignation (QUIT!!!!!). But what choice do we have?

All these are so scary, so just doing PN surgery is not going to provide any relief when we have issues with other nerves too. So what do we do?

sam wrote:All these are so scary, so just doing PN surgery is not going to provide any relief when we have issues with other nerves too. So what do we do?

Yes, very scary indeed, Sam! As I mentioned in another post, quite a few of us don't just have PN. It's very disappointing to find out that after all the research you've done, all the doctors you've seen, signing up for PN surgery .... you're not done, yet. Kinda feels like a physical blow. But that's my own fault for being so very focused on PNE and for being ignorant in thinking that it would take care of everything else. To me, this doesn't mean the PN decompression was worthless. Not at all! I'm glad I got (what I consider) the biggest, scariest surgery over with first. I could've had my ilioinguinals done first, but would that have solved my PN entrapment? Nope!
I also think a lot of us are falling short by the lack of post-ops coming back to the community. I personally feel decompression surgery gets a bad rap not only by patients but by the surgeons who are performing this surgery. We hear a lot of I still have significant pain after surgery! And then they tend to go away. But WHY are they still in pain? There could be so many reasons for this. What other issues do they have going on? Was the PN and its arteries severly damaged? Was the surgical approach they chose able to decompress ALL of their entrapments? A's Mommy is a good example of this. It's proof that currently; there is no ONE surgery to decompress the entire PN.
So, what do we do? We pay attention to our bodies to try really, really hard to identify our specific areas of pain and be realistic about it. Then you keep moving forward until you reach a tolerable, if not pain-free destination.

For me the stomach pain is like someone hit me in the stomach 2 minutes ago.

Ray P. wrote:For me the stomach pain is like someone hit me in the stomach 2 minutes ago.

How awful! So, is it a more diffuse kind of pain, Ray? Is it deep? Superficial? Both?

Yes you are right Karyn, we have to pay attention to our pain and our most important problem. I know I have some problems with my nerves in the lower abdomen the ileogastric I think, pudendal nerve, prolapse,then the piriformis and SIJD issues. Constipation is one major issue too. Somehow my whole pelvis is in a mess and I think it is like a domino effect when one nerve is damaged, the others also become more prone to damage. We should aim for a tolerable pain relief, My hugs and Best wishes to you Karyn for your recovery.

OMG, Sam! Hugs right back atcha, Hon!
I'm so, so sorry for all that you're going through. BUT ... I'm so impressed with you that you're able to separate these different (horrendous!!!) issues and types of pain!

sam wrote: I think it is like a domino effect when one nerve is damaged, the others also become more prone to damage

I don't think you're far off the mark there at all, Sam.

sam wrote: We should aim for a tolerable pain relief,

I couldn't agree more, Sam. But I guess it's a very personal chocie what "tolerable pain relief" is. Knowing what I know now, I will not accept my current condition. Granted, I'm sick to death of self diagnosing and yet more medical research. I'm not a freakin' doctor, for cryin' out lound!!! And I'm sick of going to the doctors, too!
I just want to be left the smuck alone! But ... that's not going to get me anywhere; and I don't want to be in this place any longer than I have to. So, I'll do whaterever it takes, as resources allow, of course and complete this journey for ever how long it takes. My focus is ... this will not be forever!

Debbie, has your PT checked out your psoas muscle? Often pudendal neuralgia is associated with orthopedic/musculoskeletal issues that cause pain in areas other than just the pudendal distribution area. A good PT or manual therapist might be able to help you figure this out.