Health Organization for Pudendal Education

Hi all,

I suspect I may have PN/PNE and would appreciate any opinion that any of you can give even if it is not coming from medical professionals.

My symptoms started 2.5 months ago after playing tennis; I felt a sharp but brief pain in the lower left side of my abdomen. The pain went away immediately but the following night I kept waking up every 40 mins to what felt like an urge to urinate, though there was something strange and different about the feeling; it was like a feeling of pressure or heaviness somewhere in the pelvic region. After treating me for prostatitis and interstitial cystitis, my urologist is suspecting something nerve-related, possibly SIJD irritating the nerves. I've had two sessions with a naprapath who agrees and is treating me for that. PT has noticed significant muscle tension on the left side (back and abdomen). Urologist has arranged for a radiologist to perform a PNE diagnostic block, though he has actually never done that before. In my country (Finland), it seems almonst no one has heard of PNE.

Along with the urinary symptom, the the following symptoms have been slowly appearing:
-mild burning in the penis (mainly after urinating. Urinating while sitting down sometimes seems to make it even worse)
-numbness/pain in the buttocks (initially only affected the left buttock and very infrequently, but now affects both regularly. I often get this pain even when laying on my back or on my sides)
-sharp pain in the lower side of my abdomen and groin (initially only affected the left side of the abdomen but now sometimes also happens on the right side)
-climbing up stairs seems to make the urinary urge worse

For those of you patient enough to have read this far, I'd like to ask a few questions:
1. Since my sitting pains are primarily in the buttocks (lower and sometimes also upper) and the thighs, and sitting down does not seem to significantly affect the burning sensation in my penis or the sharp pain in the abdomen/groin, can it still be PNE?
2. If you also experience urinary urge/frequency symptoms, do you also feel like it is a very distinct and different feeling from a normal urinary urge? Ie. do you feel as if the urge is coming from a different location in your body?

Edit: 3. The best way I can describe the groin pain location is to say it is toward the bottom of the inguinal groove, where the upper inner thigh and the lower abdomen connect; it feels like it sometimes radiates along that path by a centimeter or two, and sometimes also at the pubic tubercles. The abdominal pain I mentioned usually seems to be more or less halfway between the iliac crest and the center of the body but sometimes the pain is directly at the iliac crest. For those of you with PN/PNE experience, would you say these are unusual locations for PNE pain if there is no accompanying pain at the ischial spine or alcock canal?

Thanks for any answers.

Hi and welcome to the forum.

qwertyuiop wrote:
For those of you patient enough to have read this far, I'd like to ask a few questions:
1. Since my sitting pains are primarily in the buttocks (lower and sometimes also upper) and the thighs, and sitting down does not seem to significantly affect the burning sensation in my penis or the sharp pain in the abdomen/groin, can it still be PNE?

It doesn't fit the typical symptoms of PNE but I would never presume to diagnose over the internet.

qwertyuiop wrote:2. If you also experience urinary urge/frequency symptoms, do you also feel like it is a very distinct and different feeling from a normal urinary urge? Ie. do you feel as if the urge is coming from a different location in your body?

Not really. For me it felt like the typical urge only accompanied by a burning sensation -- maybe because the bladder sphincter is innervated by the pudendal nerve.

qwertyuiop wrote: 3. The best way I can describe the groin pain location is to say it is toward the bottom of the inguinal groove, where the upper inner thigh and the lower abdomen connect; it feels like it sometimes radiates along that path by a centimeter or two, and sometimes also at the pubic tubercles. The abdominal pain I mentioned usually seems to be more or less halfway between the iliac crest and the center of the body but sometimes the pain is directly at the iliac crest. For those of you with PN/PNE experience, would you say these are unusual locations for PNE pain if there is no accompanying pain at the ischial spine or alcock canal?

Yes, I would consider those to be unusual locations for PNE pain based on the literature and what I've read patients say on the forum over the years.

You might want to consider involvement of the genitofemoral nerve, ilioinguinal nerve, and the psoas muscle. Have you been checked for a hernia?

My pain was not in the inguinal canal but I had significant pain at the ischial spine and Alcock's canal so I would say my pain was different than what you are describing. However, the thing about pudendal neuralgia is that it is often accompanied by other problems in the pelvis and may not be the primary source of the pain. For instance, you can be having irritation of the pudendal nerve due to your pelvic floor muscles being tense from some other pain generator that is not pudendal nerve entrapment.

Good luck with your nerve block. Wishing you the best in getting this figured out and getting the right treatments.

Violet

Hi Violet, and thank you!

Not really. For me it felt like the typical urge only accompanied by a burning sensation

Interesting. For me it's such a distinct feeling from the typical urge that I can't even locate the sensation, and when it woke me up the first time it took me a minute or two to even realize that I should urinate to relieve it... It's not the bladder-spasm kind that makes you feel you're about to piss your pants, and it's not until I hold it in for hours that I begin to actually feel the typical urge coming from WITHIN my bladder as it begins to fill up properly. It is extremely bothersome and generally wakes me up once an hour regardless of strong sleep medication. I've searched endlessly online for similar descriptions of a symptom but no luck.

You might want to consider involvement of the genitofemoral nerve, ilioinguinal nerve, and the psoas muscle. Have you been checked for a hernia?

Would a neurologist be the correct person to assess the involvement of those nerves? Since you mention the psoas muscle, a PT did say my psoas (and ilio) muscle was EXTREMELY tense and painful. As for hernias, I have had an MRI of the chest, pelvis and lower abdomen and the report mentioned no hernias, but I don't know if the doctor was specifically looking for them. The report also mentioned ilio-psoas looking normal. I also get hip pain after walking for a short while as well as lower back pain while sitting (forgot to mention that earlier) but X-rays and MRI didn't explain those either.

I had significant pain at the ischial spine

If there is a PN entrapment at the ischial spine, should palpation of the ischial spine location through the abdomen produce pain?

Thanks very much for replying and for your kind words. It's great to see that someone has overcome their condition but still sticks around here to help others out.

Well, that is annoying if the urinary symptoms are waking you up that frequently. During the worst of my PNE I was getting up about 6 times a night due to the urinary symptoms.

qwertyuiop wrote: Would a neurologist be the correct person to assess the involvement of those nerves? Since you mention the psoas muscle, a PT did say my psoas (and ilio) muscle was EXTREMELY tense and painful. As for hernias, I have had an MRI of the chest, pelvis and lower abdomen and the report mentioned no hernias, but I don't know if the doctor was specifically looking for them. The report also mentioned ilio-psoas looking normal. I also get hip pain after walking for a short while as well as lower back pain while sitting (forgot to mention that earlier) but X-rays and MRI didn't explain those either.

I don't know if a neurologist would be the right specialist to see in your area. It would depend on the neurologist and whether they had done any research or had any experience with patients with pelvic nerve pain. I'm sorry, I'm not an expert on hernias -- I just remember we have had patients on the forum with pain similar to pudendal neuralgia who ended up having a hernia. I'm not sure hernias always show up on imaging but neither does sacroiliac joint dysfunction. If you are having hip pain you probably also need to rule out femoral acetabular impingement or labral tear. You can read Lernica's posts on this forum for more information on that topic.

qwertyuiop wrote:If there is a PN entrapment at the ischial spine, should palpation of the ischial spine location through the abdomen produce pain?

I have never heard of palpating the ischial spine via the abdomen. I think the ischial spine is typically palpated through the vagina in women or the rectum in men because it is deep in the pelvis. I had significant pain when the ischial spine area was pressed on.

Violet

(haven't posted in a while because I lost access to my account and didn't get around to creating a new one until now)

Thanks for your replies, Violet.

I would like to ask you, since you experienced urinary urgency before having surgery, was the urgency a constant sensation or one that would go away for a while after going to the bathroom?

For me the urgency appears at quite precise intervals (one hour after emptying the bladder), so I'm wondering how a PN/PNE could cause this. If the urgency were a result of a nerve being compressed, should the sensation be constant and not be affected by whether or not you empty your bladder?

It's been a few years back, but as I recall the sensation would improve somewhat for a little while after urination. I think that PNE makes the nerve hypersensitive so that when the bladder fills, the branch of the pudendal nerve that innervates the bladder sphincter becomes more irritated. In other words, as the bladder fills there is more pressure on that branch of the nerve that is already hypersensitive. I guess that's just my theory.

Violet

That makes sense. In that case, if a PNE patient's biggest issue was urinary symptoms instead of pain, a bladder removal surgery could then be a valid option if everything else has failed. Or do you think the nerve might still send signals of urinary urge even if the bladder is gone?

I'm wondering what would be the safer option: bladder removal or PNE surgery. If the latter fails, I might get more symptoms (including more intense pain than I experience now).

Bladder removal would be pretty radical and wouldn't necessarily take away nerve pain. I would try conservative treatments before any kind of surgery but if it came down to surgery, PNE surgery would not be as radical I don't think. Surgery is never a guarantee and you are right that you could end up with more pain.

Violet