Officially diagnosed with PNE

[Barre]

I was just diagnosed with what is most liked Pudendal entrapment at the ischial spine .

MRI results showed a light swelling of the left pudendal nerve at the ischial spine, this is the side where I have my symptoms.

Urologist said that best option for the long term is to have surgery as soon as possible with doctor Bollens, been trying PT with some improvement but nothing really lasting unfortunately.

My symptoms are feeling of swelling or sitting on a ball in my left sitbone, intermittent pain/irritation in perineum when sitting, mild constipation and weak urine stream with post dribble, at times intense burning sciatica like pain in my glute and side, pain/irritation in left groin area when wearing tight clothes, most of these are intermittent and pretty random. Sitting in my car without a cushion is very uncomfortable and painfull in my sitbone (ischial tuberosity)

Symptoms for about five months now .

Had good results from nerve block, however it did not help for the intense burning sciatica like pain

I'm confused though as all this does not seem very pudendal specific.

One thing though, I had the nerve block in Monday and the MRI scan on Friday, is it possible that the nerve could appeared swollen because of the block? Urologist said that this possible but given the extent and time of my symptoms and the fact I get little relief from PT it is more likely that the nerve is entrapped and has to be released.

She proposes that in the meantime while awaiting surgery I should continue PT with internal work and a second nerve block to see if this resolves the issue.

I emailed doctor Bollens yesterday and am awaiting his response to have surgery or his opinion

Any thoughts would be appreciated.

Thanks !.

[Violet M]

Hi Barre,

I'm sure the urologist knows way more than I do, but if you think about it logically, it makes sense that the nerve block could have caused a temporary nerve irritation/inflammation. Often people have a flare-up in symptoms for a short time after a nerve block. So, I'm not sure you can base the diagnosis on the MRI results. MRI's aren't always considered 100% accurate for diagnosing PNE. They are good for ruling out obvious things that are pressing on the nerve, like a tumor, etc.

Your symptoms are similar to the symptoms I had with PNE. I had sciatic nerve irritation in addition to PN symptoms because the piriformis muscles were in spasm and pressing on the sciatic nerve. I still get some sciatic symptoms on one side even after PN surgery but I have ligament problems with unstable, hypermobile pelvis so I wouldn't have expected that to resolve from PN surgery. So, like many PN patients, you may have a combination of things going on, or one underlying thing that is affecting both the sciatic and pudendal nerve. I think it is reasonable to do what the physician recommended - to continue PT without internal work (especially if internal work causes a flare-up) and try a 2nd nerve block. Many PN surgeons recommend 3 nerve blocks before trying surgery. I would be interested to hear what Dr. Bollens thinks.

Violet

[StefanPetrov]

How did you develop PN?

[Barre]

Hi Barre,

I'm sure the urologist knows way more than I do, but if you think about it logically, it makes sense that the nerve block could have caused a temporary nerve irritation/inflammation. Often people have a flare-up in symptoms for a short time after a nerve block. So, I'm not sure you can base the diagnosis on the MRI results. MRI's aren't always considered 100% accurate for diagnosing PNE. They are good for ruling out obvious things that are pressing on the nerve, like a tumor, etc.

Your symptoms are similar to the symptoms I had with PNE. I had sciatic nerve irritation in addition to PN symptoms because the piriformis muscles were in spasm and pressing on the sciatic nerve. I still get some sciatic symptoms on one side even after PN surgery but I have ligament problems with unstable, hypermobile pelvis so I wouldn't have expected that to resolve from PN surgery. So, like many PN patients, you may have a combination of things going on, or one underlying thing that is affecting both the sciatic and pudendal nerve. I think it is reasonable to do what the physician recommended - to continue PT without internal work (especially if internal work causes a flare-up) and try a 2nd nerve block. Many PN surgeons recommend 3 nerve blocks before trying surgery. I would be interested to hear what Dr. Bollens thinks.

Violet

Thank you for the reply Violet,

I did indeed get a flare for about a week after the nerve block but they said that this is pretty normal and I had to give the steroids a week or two to kick in, and they eventually did, they say that if the block was succesfull they can repeat it in 4 to 6 weeks.

Why don't you recommend internal ? I have read different opinions on it , some people including my urologist, say it can be a very helpfull for triggerpoint release that can compress the nerve, while others do not recommend it , my PT does not think that in my particular case it will be helpfull but she is willing to try it if I want, she did it once last week and I did not get a flare up , she assesed that it did not really feel tight except for the obturator and piriformis .

I rather avoid surgery altogether but off course I also want to best possible outcome and hopefully get rid of this altogether , I am also curious what Bollens will say but given the fact that he is a surgeon I can probably guess he will also propose surgery , both my urologist and Bollens say that the surgery in itself is a minor procedure and recovery usually goes smoothly, but it still is surgery though with all the associated risks, even if they are rare.

[Barre]

How did you develop PN?

It's all pretty silly and embarassing, but than again this whole condition is silly and embarassing.

Got it from anal intercourse/prostate massage, month later my symptoms started but I always had a history of chronic prostatitis , just unlucky, one chance in a million, if only I had these odds while playing the lottery !

[Violet M]

Why don't you recommend internal ? I have read different opinions on it , some people including my urologist, say it can be a very helpfull for triggerpoint release that can compress the nerve, while others do not recommend it , my PT does not think that in my particular case it will be helpfull but she is willing to try it if I want, she did it once last week and I did not get a flare up , she assesed that it did not really feel tight except for the obturator and piriformis .

Hi Barre,

If internal PT doesn't flare up your symptoms maybe it's OK to continue, but if it's not helping after 6-12 sessions it may not be worth the time and money. I quit doing it before surgery because it would flare up my symptoms really badly before I had surgery and I couldn't see the point in constantly irritating an already irritated nerve. But that's just my experience and may not be a problem for you.

Violet

[stephanies]

Barre,

Many years ago when I had blocks my doctor said to wait 6 weeks after a block for the MRI because it had the potential to cause nerve inflammation. If you have both PN and sciatica, I think it’s good to rule in or out an issue at the S2 nerve root specifically since that nerve root is a place of origin for both nerves.

Stephanies

[Barre]

Barre,

Many years ago when I had blocks my doctor said to wait 6 weeks after a block for the MRI because it had the potential to cause nerve inflammation. If you have both PN and sciatica, I think it’s good to rule in or out an issue at the S2 nerve root specifically since that nerve root is a place of origin for both nerves.

Stephanies

Yes, it probably is from the nerve block, isn't the ischial spine the location where they inject the steroid ?

Anyways, 8th of August I have consultation with Bollens.

Currently taking Amitryptiline + Trazodone at low dose and it seems to help for the burning sciatic like pain

[Violet M]

They typically inject the steroid at the ischial spine or in Alcock's canal.

[zazzaleon]

Hello , I am suffering of pudendal neuralgia for over a year, how did you get in contact with Dr. Bollens ?

i tried to contact him but no answer