possible PN in NYC - new to the forum

[Lernica]

I have struggled with GI symptoms for many years and yes, I believe that a tight pelvic floor can be related to GI symptoms.

I have a lot of faith in you overcoming PN as it sounds myofascial in origin, not entrapment. My PN was also myofascial and is now gone. You are young, you have identified your problem early, and you have found the right place for answers.

Like the others I agree that you should not shy away from neuro drugs (e.g. tricyclic antidepressants) in your attempt to settle down the pain, especially given your hunch that your symptoms may be related to a tight pelvic floor. Have you ever tried taking a tranquilizer (e.g. valium, klonopin?) These are anti-anxiety medications. They are addictive and so I am not suggesting that you start taking them. But if you can get your hands on a single pill (taken at bedtime) and see if your pain is reduced the next day, then you will can an instant answer as to whether neuro medications might help you.

Best of luck.

[winged_cent]

Thank you for your comments.

A peculiarity (likely a lucky one) in my case is that I am actually NOT in much pain. My pain level is zero when standing, and probably doesn't rise above a 2/3 (burning) and sore coccyx even after prolonged sitting.

What I do have, however, is constant TINGLING (exacerbated by sitting), and general changes in sensory perception. The ground zero for the tingling is the perineal region, but it has also radiated back into the coccyx and forward into the penis. In terms of sexual performance, I think there haven't been any mechanical changes, but the sensation is different (slightly diminished). When I want to urinate, it also feels different, and there is some minor burning (pain level 1/2) about 50% of the time I urinate.

I am taking the 10 mg dose of amitryptiline, though I'm only in my first week and thus haven't felt much (except sleepiness as a side effect). I can only imagine that anti-pain drugs would not be appropriate/necessary in my situation, as I am not really in pain.

Does anyone have paresthesia-dominant PN, or is pain a dominant system for everybody? Does the dominance of paresthesias suggest anything in particular except nerve involvement?

[Lernica]

Parasthesia often precedes pain. You are smart to take steps now to nip this in the bud before any pain develops.

[flyer28]

Sometimes it is difficult to differentiate between paresthesia and pain, I also have some pain/tingling in the frontal part of pelvis (scrotum, penis, pubic area) bilaterally. I remember that in the beginning, I had 4-5 days paresthesia mainly after sex. But this faded away always before it became chronic. I think that maybe sometimes the state of mind and the overall level of depression/anxiety is deciding whether your brain will interprete the feelings as classic pain or as some tingling/paresthesia/other negative feelings.Some other factors (stress, tiredness) might also play a role.

[Lernica]

100% agree. The body/mind connection is so strong in pelvic pain!

[Frustrated1]

Well, I have had the same symptoms as you for 3 years and 8 months now. Not a terrible amount of pine but quite uncomfortable to sit for any length of time and it definitely has impacted sexual performance and quality of life. Have tried almost every possible medication, PN blocks and nothing has worked whatsoever. Dr Antalok is supposed to be one of the best doctors in the field but nothing he has done has helped and I don't feel surgery is the next step because the injections haven't really worked and that is usually a sign that the right area isn't even being targeted. Pretty much at my wits end. It all started after a pretty serious bout with constipation related to proctitis.

[flyer28]

to frustrated1> did you try PT? what has dr. antolak said about your failed blocks? did he recommend operation anyway or not?

[winged_cent]

Yesterday I went to see the urologist that originally referred me to PT and prescribed amitryptiline for the tingling. He basically said that I should continue with the Elavil (which I will) for several months to really gauge if symptoms improve. When I asked him about the possibility of doing imaging with Dr. Potter to screen for abnormalities, he said that "he didn't believe in that" and wouldn't write me a referral for an MRI.

Has anybody seen a neurologist (or other doctor, but I imagine a neurologist would be most relevant) in New York who might not be a PN expert but is at least aware of the potential diagnosis and would be willing to refer to Dr. Potter if the medical history warrants it? I could just pick one randomly but I don't want to waste my time with somebody who would think I'm crazy for asking for a diagnostic MRI.

Thanks!

[fred5]

Unless I'm mistaken, your internist should be able to write a script for the Potter MRI.