No symptoms when moving, symptoms when standing. Not PN?

[Tidsdilation]

Hello. I am a 32 year old man from Sweden trying to figure out whether I may have PN or not. See my 4 questions listed further below.

Since an injury that took place about 10 months ago I gradually developed symptoms indicative of possible nerve issues originating from the pudendal nerve and/or its branches. My doctor has tried to have me meet a neurologist in addition to an urologist but thus far I have not been able to get in contact with a neurologist. In my country it seems like they rarely, if ever, deal with pelvic issues.

My symptoms, that mainly are present around the perineum and that greatly vary over time (even during the same day), include the following: Burning pain that comes and goes, warmth that comes and goes, cold that comes and goes, tingling that comes and goes, shooting and "sparking" that comes and goes, spasms that sometimes come in sessions and include the upper hamstrings and parts of the buttocks a couple of centimeters away from the tailbone, a constant pulsation/"vibration" in the perineum. Other symptoms have been present as well, such as spontaneous movement/contractions of my penis, "electric" feelings, reduced erection quality, and a production of pre-ejaculate during major parts of the day for no apparent reason, visible in my urethra and sometimes leaking out with a droplet if I press on the head of my penis.

The thing is that my symptoms first and foremost are the same regardless if I sit or lay down (on my back or on my belly), and this has been the case ever since the symptoms first came on. As a matter of fact the symptoms are present when I stand as well. However, whenever I start moving (such as walking), and as I remain in motion, my symptoms are greatly reduced. Often to the point where I can not even notice them for the majority of the time. Then as I stop moving and sit down, or lay down, or just stand still, the symptoms typically gradually come back starting just 5 seconds or so from the moment I go still. If I have been moving for a longer time, such as walking around and doing stuff for at least an hour or so before I decide to rest, I always get increased symptoms whenever I start that rest session. I also always get a session of spasms during those moments (usually from the upper hamstrings and from the parts of my buttocks a few centimeters away from the tailbone). My questions are the following:

1. When it comes to PN: Is it common for the symptoms to be greatly reduced during movement compared to when standing still?

2. Do people with pudendal neuralgia usually have increased pain symptoms during physical activity compared to when they are standing still? In my case any kind of physical activity greatly reduces my sensory symptoms.

3. Do people with pudendal neuralgia typically have increased pain if the problematic nerves are being pushed against? In my case I have no increased symptoms if I try to push as hard as I can towards the soft tissues where my symptoms mostly are present.

4. Do you believe I have PN based on what I have written in this post?

Thanks in advance.

[April]

Welcome to the forum. There is considerable variability in pn pain, but most of the descriptors of the pain itself sound like nerve pain. I do not have an increase in pain when I sit. It's fairly constant or, if anything, better when I sit. But that is not typical. I have not heard of anyone noticing a decline in symptoms when moving. I've suspected that moving increases my symptoms, but the increase is not immediate. It takes a while to set in. So, here are my best guess answers to your questions:
1. No, that is not common. Is the reduction in pain immediate? Do you have an uptick in pain later in the day after extensive movement?
2. Some do have an increase in pain when physically active. For me, the onset of pain was usually a bit delayed, and the pain would kick in later.
3. Yes, usually there is high sensitivity at the ischial spine.
4. My guess would be that you may not have it since you don't have any extra pain at the area of the ischial spine. But I would continue to ask doctors about it. It is a possibility. Your pain does sound like it is nerve-related. Have you seen a pt who is knowledgeable about pn? A physical therapist could be helpful in diagnosing. A nerve block (using imaging) directed at the pudendal nerve is also useful for diagnosing. A reduction in pain after such a block is diagnostic of pn.

April

[Tidsdilation]

Thanks so much for the reply and for welcoming me to the forum.

1. The reduction of symptoms is indeed pretty immediate, we are talking a clear reduction in matter of just seconds. The same also always applies the other way around: When I sit or lay down, or just stand still, I start noticing how symptoms gradually come on starting just 5-10 seconds after I go still. And after a few minutes of being still the symptoms may have increased to be at its typical rest level. To answer the second question: Yes, if I move for a long time period then I always get increased symptoms during the first 10-20 minutes of resting sitting/laying down or standing. This does not happen If I rest after having moved for a much shorter time period. I do in general not have more symptoms as the day progresses. I have much less symtoms during night.

3. I see. Would you say that this is the case regardless of what particular area of the pudendal nerve is damaged/diseased? Further: Should a person with PN expect to have increased pain sensitivity somewhere by touch? This does not seem to be the case with me, and my urologist did examine my rectal area as well.

4.I have not seen a physical therapist knowledgeable about PN. I doubt I could find such a physical therapist in my area or even my country, but I can perhaps find a physical therapist knowledgeable in nerve issues. I will look into that, thanks for the tip. Regarding nerve blocks I want to ask you the following: Let's say a nerve is healing. Could it then be problematic do interfere with it using sharp objects and to block it from operating even though it is just temporary?

I would like to ask another question regarding nerve healing that you, or someone else reading this, perhaps may be able to answer to some degree.

5. Let's say a nerve is healing. Should one then almost always notice how areas where symptoms are felt from are changing over time? Or is it during nerve healing not uncommon for the very same local nerve area to have symptoms month after month, even year after year, while symptoms from other areas are absent?

[April]

Here are my best guesses:
1. I think that would be unusual for pn. The pain should increase rather than decrease with movement (and vice versa), I think.

3. I think that ischial spine area is almost always sensitive because it's where the nerve passes. But I will say that in the first year I had a couple of doctors test me internally in the place where the nerve touches, and it didn't seem that sensitive there.

4. The needle should not touch the nerve itself---or if it does, I don't think that's intended. To reduce a negative response to the block, you can request that it be done as a purely diagnostic step, so that they use only a numbing agent and no steroid. Blocks do often create flares, and it is the steroid that creates that. The steroid is supposed to create a reduction in pain, but a double-blind experiment a few years ago suggested it generally does not. That also matches my experience and that of others on this forum. So, it may make sense to skip the steroid.

5. I don't think I understand this question. I will say that the nerve healing process is very slow. It can take a year or two for a nerve to heal. I also don't think the process is entirely linear.

April

[Tidsdilation]

Thanks again for the answers.

What I wanted to ask with the fifth question is whether nerves healing over time typically should result in gradual changes of areas where symptoms are originating from or not. In the case of wallerian degeneration I assume that a person always should feel how the nerves as time passes are tingling from areas closer and closer to the end target. I wonder what the case is in this regard is when it comes to other types of nerve healing/regeneration. I remember seeing a youtube video of a man talking about how his peripheral neuropathy as it got better resulted in him feeling sensations from new areas occasionally.

I also remember reading about some other case where a person with a nerve healing situation that from what I understood not involved wallerian degeneration, had a gradual change of areas where his symptoms were present as his nerves healed. His nerves healed very slowly so the area where his symptoms originated from changed its location very slowly over time.

Learning about this made me start thinking about this topic when it came to my own situation and when it comes to nerve healing in general. When it comes to my own situation the area that my symptoms originate from has not moved even the slightest amount in any direction since my symptoms first presented themselves about 9 months ago. I basically wonder if this is something that may point in the direction of my symptoms being signs of nerve irritation or of nerve dysfunction, rather than of nerve healing, or if it is of no relevance at all.

I want to ask another question on this topic that you may be able to answer, I hope you do not mind me asking all these questions.

6. Do you know good ways to figure out whether nerves are healing or whether they are being irritated or dysfunctional/diseased? I have read as much as I have been able to come across online about nerve healing vs nerve irritation/dysfunction and it is quite frustrating how the very same symptoms can be present in both cases. For example, pain can be very common in various types of nerve healing. This article is of much relevance on the topic: https://neuronline.sfn.org/scientific-r ... n-and-pain

[April]

I see. I don't know. I haven't heard of anyone describe what you are describing with wallerian degeneration and regeneration. But, many of us use ice and/or heat to mask the pain so some of that may not be detectable with ice and heat.

For your 6th question: I do not know any way to figure that out. I wish I did! I had surgery a year ago and still have pain. My pain comes and goes but is lower than before the surgery but higher than 3 months after the surgery, so I'm also confused about this. Thanks for the link. It sounds like the research suggests that any process that disrupts the regeneration process (or even attempt to accelerate regeneration?) may set in motion processes that lead to chronic pain? Am I understanding that correctly? Are you worried that the nerve block might disrupt the regeneration? My guess is that it wouldn't since it's not that invasive, but I don't know. I'm wondering, though, if surgery would be disruptive.

April

[Ikarus-70]

Hi Tidsdilation,

I have the same issue. My pain decreases immediately when I am moving, espacially moving the legs. The more moving, the better. I like dancing!
When I am standing still, pain increases within minutes.

Seems to be something similar with us. But I have the pain in different places than you have. It is in the Groin and radiating from there. My pain is also diagnosed as nerve pain.

[erikdelfos]

Hello

have the same issue. My pain decreases immediately when I am moving, espacially moving the legs. The more moving, the better.

3 questions:

Did you eat healthy, before the pain symptoms where coming? Or always unhealthy food?

Are you a sex adict, or you masturbate a lot. Let me say almost every day for a very long time.

Did you sit for a very long time, 9 hours a day and olmost no body movements?

[volans]

However, whenever I start moving (such as walking), and as I remain in motion, my symptoms are greatly reduced. Often to the point where I can not even notice them for the majority of the time. Then as I stop moving and sit down, or lay down, or just stand still, the symptoms typically gradually come back starting just 5 seconds or so from the moment I go still.

This is me as well. I can walk for 2 hours without any increase in pain, but standing for even 15 to 20 minutes is going to create a lot of nerve pain in my lower legs, feet, and back.

Lying down flat on my back creates the most nerve pain in the legs and feet. I've had both an MRI of my pelvis and lumbar spine without anything noteworthy to report. At some point i had soreness and tightness in the upper buttock area and I foolishly used one of those massage guns on the area which ended up giving me more nerve pain in the lower legs and feet. Perhaps it's a tight piriformis muscle, i'm not sure.

[Dreamteam]

Hi there,
I realise that this is an old message, but I too have improvement with movement. In fact, for the past several years of this nightmare, I note that I am constantly moving my legs etc when lying down. Please tell me, have you managed to get any relief or any discernible improvement? Many thanks Dt