New member - is it PNE or CPPS?

[andrew]

Hi There. I am a 32 year old suffering from pelvic pain last 12 mths. 1st started as painful urination & penile pain after long bike ride. Never been on the bike since but my symptoms have gradually progressed. Symptoms now include penile tip pain, rectal pain, & penile, perineal & rectal paraesthesiae. Also painful urination in the mornings. Recently pain & paraesthesiae down sciatic nerve distributions. Pain is worse with stress & exercise. No pain with ejaculation but worsened pain for a few hours after ejaculation. Pain better with heat, relaxation, meditation & acupuncture of pelvic muscle groups.(Acupuncture really helps). Diet doesn't seem to affect things. Initially thought I had pudendal nerve injury. Now thinking I might have CPPS.
Which do I have?
My symptoms are along the distribution of the pudendal & sciatic nerves.
Do people with chronic prostatitis / chronic pelvic pain syndrome get paraesthesiae?
It seems that because the pudendal nerve is so intimately related to pelvic muscles that it is difficult to differentiate between the 2 in my situation. (ie. primary nerve injury with worsening due to tight hyperactive pelvic muscles or tight hyperactive pelvic muscles causing irritation of pudendal nerve)
I suppose from a practical point of view it doesn't matter which diagnosis I have. Ie. conservative treatment is the same:
- follow headache in the pelvis book
- get a good pelvic physiotherapist
- acupuncture, meditation, hypnotherapy, stress reduction, etc etc
- consider medications
I have only been doing the above for about 2 months & have experienced approx 30% improvement in symptoms (no internal TP though)

I'm from Australia & can't find a proper pelvic PT so am considering going to US to do Wise's clinic.
Are there cyclists here who have/have had similar symptoms to me? Please let me know as the last 12 months have been very difficult for me.

[webslave]

Paresthesias occur when sustained pressure has been applied over a nerve, so the cycling may have set the chronic prostatitis / chronic pelvic pain syndrome off, and nerves take a long time to recover. No more cycling, or use a special seat if you do (hole under perineum).

[Jay]

Hi,

I wanted to chime in that, except for the parathesias (I don't have those, but others do), your symptoms are similar to my own. It's natural that pain would follow the distribution of the pudendal nerve, as that's really the only major nerve extending into the areas in question. However, as you noted, the pudendal is also intimate with the pelvic floor musculature. Spasm would certainly rile it up, as seems to have been the case with me. My PT was astonished by the level of muscular tension I had.

Finding proper therapy in Australia is difficult. At the least, I would suggest calling Doctor Wise and discussing your situation with him. He'll determine whether the clinic might be viable for you. I can tell you that, despite my own initial protests, every credible physician I've seen has strongly recommended against PNE surgery. My physical therapist has said that, even if it was that (she was indulging me since she thinks PNE is a fad), it can be addressed through tissue mobilization and other PT techniques designed to loosen up compressions and scar tissue.

There are so many options before the knife, so don't rush into anything. Begin with the conservative and go from there.

[andrew]

Thanks for your help. I am not considering surgery/Botox/blocks. I've spoken with Dr Wise - he went through a battery of questions with me & stated that I would be a good candidate for his clinic/program. I am strongly considering going there as there are no pelvic physios here in Australia who could teach me internal TP release.

I am a doctor myself & am considering trying some internal TP release on myself. Are there any websites or links I could go to that would describe how it's done? I plan to initially use my gloved finger and some lube to start with & go gently........then maybe get a wand that's recommended here via amazon & try that - as long as I'm gentle I can't see the harm in trying as I'm very keen to get this going - what do you think?

Thanks!

[webslave]

Medical doctor? Specialty? Visiting Wise would be a good idea. Australia needs at least one medical person with some training in this area, even if only to pass knowledge on to physiotherapists and/or uros.

For wands, I have a selection in my shop (link in my signature), but you'd be better off seeing Wise and being trained to use it.

[Jay]

Hi Andrew,

Considering the fact that you're a MD (I presume), you probably have experience giving prostate/rectal exams, which puts you a bit ahead of the curve. :laugh: I think it's good to begin with the digital approach. This allows you to get a direct sense of the state of the musculature, and hopefully, the feel of trigger points. Tools like wands can be helpful for hitting awkwardly positioned or deeper muscles, though.

If you have Headache in the Pelvis, the book comes with a number of illustrations aimed at self-PT. However, as Webslave says, there's really no substitute for having an experienced teacher. If it's not a financial inconvenience for you to visit the clinic, then it would be a very nice resource. You'll receive a urological exam, a top-notch PT exam w/self-PT education, and paradoxical relaxation training.

I'm glad to see that you are open to treatment, and that you're willing to start with conservative measures. People who have that sort of positive mindset tend to do well.

[cam_05]

Andrew where in Australia are you located?

[andrew]

Hi Cam I live in Adelaide. I have an appointment with Sherin in Sydney late next week - also seeing Prof V then too. I'm an anaesthetist (yanks call them 'anesthesiologists' ) so I'm on all the right chronic pain drugs but they ain't doing enough. Seeing a physio here in Adelaide who is very good (acupuncture, TP therapy) & has improved me by approx 30%. Also religiously following HITP book.

Despite being a medico I am completely bemused by the confusion between chronic prostatitis / chronic pelvic pain syndrome & PNE. chronic prostatitis / chronic pelvic pain syndrome side are all about conservative measures and PNE side are all about conservative measures & invasive treatments. Unfortunately invasive treatments seem to have limited evidence for benefit & not uncommon to hear of people being made worse by surgery. I've given up on deciding which side I'm on - from a practical point of view they are both treated the same conservatively.

So my aim is to give myself the best shot at conservative measures. Will Sherin teach me internal work, or do I need to go to the US for this? Am seriously considering going to Wise clinic in US - I know it's expensive but the last 12 months have been very challenging for me. I remember reading you have seen Sherin a couple of times - could you PM me or email me ([email protected]) regarding this? Thanks.