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?
Am I in the right place? Could this be PN?
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Am I in the right place? Could this be PN?
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Re: Am I in the right place? Could this be PN?
If I am honest most of the ache seems to be central.
Re: Am I in the right place? Could this be PN?
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
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
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Am I in the right place? Could this be PN?
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?
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?
Re: Am I in the right place? Could this be PN?
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.
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.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Re: Am I in the right place? Could this be PN?
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.
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.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Am I in the right place? Could this be PN?
Hope you get some answers too Danny. Let us know if you get any further with it please
Take care
Helen
Take care
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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jackieandkev
- Posts: 6
- Joined: Mon Oct 24, 2011 12:51 pm
Re: Am I in the right place? Could this be PN?
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
Re: Am I in the right place? Could this be PN?
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!
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!
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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jackieandkev
- Posts: 6
- Joined: Mon Oct 24, 2011 12:51 pm
Re: Am I in the right place? Could this be PN?
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.