Is prostatitis PNE or vice versa?

[webslave]

PNE, if it exists — and it's not in standard medical textbooks yet, and may never be — it surely a rare disorder. The low claimed success rate of the surgery (~50%), combined with the fact that chronic prostatitis / chronic pelvic pain syndrome can wane of its own accord, makes me very wary of this diagnosis The "successes" may simply be people who would have felt better anyway even without surgery, or who are so motivated to feel better, having spent a vast sum of money on the surgery, that their accounts are untrustworthy. David Wise likes to tell how he closely questioned some of the men claiming to be cured of pain by PNE surgery, and they eventually admitted to being in pain, still.

[Ausie]

Now my condition occurred by trauma and as I see it it is scar tissue that has entrapped the sensory part of the Pudendal nerve, now as I see it I am hoping to break up the scar tissue with the stretching and the trigger point and myofascial release? And supplements. But we tend to compensate for the pain and make things worse in the pelvis ? What are you you thoughts, on trauma.

[webslave]

Ausie, self diagnosis, along the lines of your above posting, is ill-advised at best.

[Ausie]

HI there, now my condition was diagnosed by doctors, this condition of mine, had a cause, and a sudden onset, so may be I should describe my onset.

It occurred 2 years ago, I was working as a volunteer on a prototype rescue vessel, in heavy seas, we turned into the wind, I was sitting at the rear, as we accelerated into the wind, the front of the vessel stood up [being a thunder cat] and the impact of the waves hitting the hull went through the hull and through my pelvis, it felt like shock waves from a explosion going through my pelvis. And the design is- grab rails on the floor and a jet ski type seating, [as the supplier said I sitting on the impact zone] so I was holding my self down, normally we use a centre console using our knees as shock absorbers, but this was a management decision, they made a huge mistake, and I paid the price

My symptoms came on two days latter When I sat down for a bus trip, lower back and right testicle pain, and right groin pain. Then one year later I was traumatised by a physiotherapist, When he vigorously jammed his elbow into my upper and lower buttocks and thigh, My symptoms increased to pain in the tip of the penis as well, I found if was active I had extra urination erectile problems and plus more etc

So I hope this describes my trauma and my onset of my problem

[webslave]

my condition was diagnosed by doctors

How many doctors gave you a Pudendal Nerve Entrapment diagnosis? Nobody in Australia should be using that diagnosis, which is very controversial.

Your description of the seagoing incident sounds more like a jarring of the lower spine than damage to the pudendal nerve, if anything.

The symptoms after physiotherapy could be the result of the therapist tweaking latent trigger points.

You've made up your mind that you have a traumatic injury, but I think you may be wrong on that.

[Ausie]

No you wrong about the jarring of the lower spine being my problem nothing showed up on x-ray or ct etc, my lower back pain is not there now but pain in my genitals is main problem.

Also Vigorously jamming a elbow into your buttocks is not a tweaking latent trigger points. That's not how you do it, you don't need that amount of force, and you don't get extra symptoms !!!

The pain in my genitals is not in my mind especially when I sit [The PAIN is very real ]

Now I understand you don't believe in PNE but do you believe in Pudendal Neuralgia ?

Do you believe symptoms and pain can come from the pudendal nerve ??

[webslave]

• Your diagnosis by an Australian neurologist of PNE is not to be trusted. There are no PNE experts in Australia, as far as I know. He read it in a journal, most likely, and your story seemed to fit.
• The sort of "trauma" that causes PNE is supposed to be on the level of a car accident, with bruising and extreme tenderness, not a banging of your bum on a boat's seat. If some sort of injury was caused, it's far more likely that it was to the nerve roots of the lumbosacral region, leading perhaps to a lumbosacral nerve pain syndrome. Perhaps a steroid epidural could be tried?
• If you had PNE, your 3 nerve blocks — only one of which helped for a short time — should all have helped for a long period (weeks) according to the proponents of the PNE hypothesis.
• You said elsewhere that you also have pain in the sacrum and sacroiliac joint. This suggest you have some sort of caudal nerve problem and should consider treatments aimed at the lower spine and the nerves/nerve roots emanating therefrom.

On the other hand, some of the things you mention (testicular pain, sacroiliac joint pain) are warning flags for Pelvic Joint Dysfunctions. Check it out carefully: https://ucpps.men/lifting-and-testicular-pain-epididymitis

[Ausie]

Yes I have tried blocks and prolo therapy to my lumbosacral nerve roots etc. My SIJ problem come on after the bad physio treatment, HE destabilised my pelvis

I did not cop just banging on the bottom, it felt like a sledge hammer hitting me up through the pelvis

Yes there is A PNE clinic in Australia, But they only treat women at the Royal women's Hospital and there seems to be a growing understanding, but it is early stages.

Now the nerve blocks were done by Two doctors One I had some success the other one no.

Now I understand you don't believe in PNE, but do believe in pudendal neuralgia ????

I am a firm believer in good PT, if it is done properly, the problem is therapist are chasing $$$$$$$$ than admitting they can't do the job, some doctors are same they will do unnecessary operations

And as I said my biggest pain and major pain is pain in the genitals, especially when I sit, as this what brings it on.

[webslave]

but do believe in pudendal neuralgia ????

No, I don't. It's another name for PNE. I think the whole PNE thing is a surgeon's way of trying to cope with CPPS. chronic prostatitis / chronic pelvic pain syndrome is not even well known amongst doctors. I have just bought the latest Harrison's medical textbook (the MD's Bible) and its description of chronic prostatitis / chronic pelvic pain syndrome is woefully inaccurate.

[Ausie]

I thought neuralgia was different to entrapment, I thought that the pudendal nerve was inflamed or something, and entrapment was due to scar tissue trapping the nerve ???

If the medical textbook can't get it right, no wonder there is so much confusion out there, all we want is a solution or a good base for doctors to work from.

[webslave]

Look at a few pages on pudendal neuralgia on the web, and you'll soon see how it is a synonym for PNE.

Yes, we are on our own with this to some extent. The medical world is trailing behind on this issue.

[Jay]

Hi,

Just wanted to add that the pudendal nerve can be irritated due to muscular spasm. The nerve is intimate with a number of muscles, particularly the obturator internus.

I once spoke with Stacey Futterman about this via email. She stated that PNE is a very harsh diagnosis, and that most cases are neuralgia (which, to quote her, just means "an irritated nerve"). She urged me to have trust in therapy and give it time. Stacey had no incentive in saying this to me, as I live many states away. However, it's noteworthy that the practice she works in has never had to refer anyone out for PNE surgery.

An additional comment from another discussion I had with Rhonda Kotarinos: "... every patient that has come to me with that diagnosis was helped by my treatment. Which was not directed at resolving a pudendal entrapment. Therefore I have to assume that they were not entrapped."

[Ausie]

Hey Jay, Thanks for your response, Yes I do agree with your input, Now I would like to ask Who is Stacy Futterman ? and Rhonda Kotarinos ?

I'm trying to educate my self and a PT in my area to work on me, it is very difficult trying to find someone, so I figure that I might have to educate someone, I wish there was a DVD of techniques for therapists and self help, it seems that a lot of people around the world are crying out for help. !
May be this could be a idea for someone ??????????

A question to the therapists, Does time mean the situation is harder to treat, looking at muscle memory, What I mean is the sooner you are treated, the quicker the results ?

[Hacksquat]

Another thing about PNE. How would the wax and wane fit with the theory of PNE? I mean, symptoms waxing and waning over weeks, not just immediate relief from sitting/standing.

[Ausie]

Hi there now I believe that the more something is irritated or inflamed the more we will fell the pain, so we become protective, and change our habits eg avoid sitting on hard surfaces, then we get caught out when we become complacent.