Health Organization for Pudendal Education

I know what you mean but you don't need to tick every box. Some people are numb and that's it.
Nerve pain is a strange thing altogether. What do others think? what about you guy's?
Forgot to ask . . .is one side worse than the other?

If I am honest most of the ache seems to be central.

Hi Danny,

There are 3 branches of the nerve so everyone's pain is a bit different -- there is no "one size fits all" with this disease so you do not need to have all of the symptoms listed.

When you sit, where is your pain located? Is it in your back/sacral area only? You say you have pain in your back-side. Does that include your buttocks, rectal, or coccyx area? Where is the hot poker sensation? I know, it's hard to discuss these things on a public forum especially when you are new here so forgive us for being so direct, but we've all lost our shyness about these things long ago in our attempts to get well.

A physical therapist who specializes in pudendal neuralgia might be able to help you sort out where your pain is coming from.

Violet M

Hi Violet

I will try and describe in a little more detail.

1) In an average day I wake up (more or less) pain-free.

2) I work at a desk, so by late morning/midday I am starting to get a dull, nagging ache in the sacral/coccyx area. (I have got used to calling it back ache - but in truth it isn't really the back).

3) The ache/pain gradually gets worse for the rest of the day. By evening it can be really bad. I have described it as being like a open sore that is being rubbed - ie it feels as though it is getting gradually more 'angry'. Is this the 'red hot poker' sensation you mentioned?

4) When it is really bad it can radiate to either or both buttocks - although this isn't as frequent.

5) Pain in both buttocks on ejaculation

6) Standing will ease the pain. Lying 'can' ease the pain

7) Some seats are definitely worse than others. An office seat isn't anywhere near as bad as a (soft) couch or a cinema seat (very worse)

8) I sleep fine

9) There was no trauma that I can trace this back to. The only possible causes I can come up with are:
a)I have always sat for long periods because of the nature of my work.
b) I also have Type 2 diabetes

10) I occasionally get a day - or even a couple of days when the problem appears to have 'disappeared'. The first few times this happened I thought it was over. But I now know that it will come back - and usually when it does it is a lot worse for a day or two. Is this common?

DannyB,

The "hot poker" sensation of PNers is usually felt up the butt, either the vagina or the rectum. It is a very common and painful symptom of PN. It sounds like your pain is limited to the sacral region. No pain in the perineum, right? If this is the case, it is sounding more like a sacroiliac joint issue rather than a PN issue. The PN is the major nerve of the perineum so it seems to me that if you're not feeling pain there, it is not likely PN.

Having said that, you should still try to avoid sitting as much as you can given that it exacerbates your pain. Could you possibly obtain an adjustable-height desk for work which moves up and down with the push of a button? It plugs into an electrical outlet. My employer bought me one for about $2,000. It allowed me to work for several more years.

If you conclude that you do not have PN, be grateful. You do not want to have it.

Best of luck in finding an answer to the source of your pain.

I think you may be correct - the pain is for the most part confined to the sacral region.

The desk is a nice idea - unfortunately I work for myself - and that is out of my budget.

I will continue my search.

Thank you to everyone who has taken time to reply.

I sincerely hope that you are all able to find relief from your pain.

Hope you get some answers too Danny. Let us know if you get any further with it please
Take care
Helen

Hi I am new to this forum - can anyone give me advice? About 4 months ago I developed this nagging aching pain down below. Can't make out where it is coming from. Sometimes I am convinced it is rectal, sometimes vaginal. It seems to move about. Can have the pain for days and then it disappears for days and just when I think it has gone, it comes back. Doesn't hurt at night or in morning but gets worse as day goes on and sitting makes it worse. Had several examinations at doctors but they think everything is OK. Had cervical smear thAt was OK and now waiting to see a colon/rectal doctor at the hospital. The doctor is mystified when I say I am not really sure where the pain is coming from and thats its sort of in the pelvic floor area. Could these be PN symptoms? I am getting desparate so please help

Jackie,

Sorry to hear about your pain. Rectal/vaginal pain is definitely consistent with pudendal neuralgia (PN). So is pain that comes and goes (depending on your activity levels). But the key diagnostic criteria is pain while sitting, since the pudendal nerve is the principal nerve of the perineum. And you have that too. So as a first step, you should limit your sitting as much as possible. Can you place your computer on a ledge about chest level so you can use it while standing instead of sitting? Can you make some adjustments at work to avoid sitting?

Please read as much as you can on this website about PN, about doctors in your area, and about your treatment options. And do not hesitate to ask us for advice. Good for you for finding this website!

thanks for responding. It is quite comforting to join this website, For the past few months I felt like I was the only person in the world with these symptoms. Friends have not been very supportive especially when I describe the pain and where it is - I seriously think they think I am imaging it! Don't sit down all day at my job - half the day is spent standing fortunately. I find these days that I try and stand up or walk as much as possible when I have the pain as it defintely feels better then.