Pudendal neuralgia (Weiss)

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housemzk
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Pudendal neuralgia (Weiss)

Post by housemzk »

I saw Dr. Weiss today. Like what other posters say, he’s extremely knowledgeable about pelvic pain and he's very friendly. I literally pulled out laundry list of issues I’ve had since I was first diagnosed with chronic prostatitis . After going through my list, he says it’s not chronic prostatitis and that my symptoms more resembled Pudendal Neuralgia. The bike was the culprit. He had me position myself in a few different poses with each leg while he touched the nerve. This was a traumatic experience overall! The pain alone makes me wonder if it’s worth the treatment he says I need. He’d like to do a nerve block and also a cortisone shot next week. From what I’ve read on this board, this doesn’t seem like a good move.

If him touching the nerve today was bad, what will next week be like? Do others experience pain when the nerve is touched? I understand that if you touch anything hard enough you'll experience some pain, but I'd like to know how others have dealt with this.

Lastly, he said my right hip is higher than my left. Anyone heard of this? I want to avoid a shot in my anus...
Age: 31 Onset Age: 30 Symptoms: Dull pain in what I think is the prostate. Tingling in the perineum. Mild shooting pains in the penis. Burning/itching feeling in/around anus. Penis sometimes is very cold. Burning urination along with some drip issues. Mild pain in lower abdomen and back. Feet also tingle and/or have pain. Diagnosis: GP and Uro chronic prostatitis; 2nd Uro says Pudendal Neuralgia Helped By: hot baths, exercise, ejaculation, Preparation-H Worsened By: riding a bike, sitting, tobacco, and maybe spicy food?
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Re: Pudendal neuralgia (Weiss)

Post by webslave »

I'd see Dr Anderson at Stanford first, especially since you are so close to him. No way would I entertain what Weiss wants without talking to Anderson first.
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Re: Pudendal neuralgia (Weiss)

Post by neis »

I'm surprised Dr. Weiss didn't recommend a lengthy, and costly regimen of physical therapy. Go see Tim Sawyer (do a search here for his number) for evaluation of these apparent pudendal nerve pains. He knows the pelvic floor better than anyone. I went to Dr. Weiss and found him useless. Couldn't hurt to see Dr. Anderson also, but if money is an issue, see Tim. My symptoms were nearly identical to yours (that shooting pain through the penis was the worst), and I was cycling a lot at onset. I also had a UTI, so I think the combination of stresses tipped me.
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housemzk
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Re: Pudendal neuralgia (Weiss)

Post by housemzk »

My experience with Dr. Weiss has so far been the opposite of a lot of the board members on here. I had my follow up this past week. The plan was to get the shot and a nerve block. Ironically on the day of the visit, I had been feeling the best I've felt in a month. After telling him this, he did his routine with my pn and I really had no pain. It was uncomfortable, but nowhere near the pain I had on my first visit. He suggested that we avoid the shot and nerve block completely and just do pt. With pt, I didn't feel real pain, but it felt really tight. I had some tingling in my legs and feet immediately after.

How I'm feeling now:
The golf ball in the anus has gone
The burning/itching in the perineum has been reduced
abdomen pain was gone, but has mildly returned
My feet still tingle

He recommended that I come back in a couple of weeks for a follow up. I got the impression that if I continued to get better on my next visit, he would feel no need to continue to see me. He does want me to see his group for pt though.

I will do my next visit with Dr. Weiss and then head over to see Tim. If I get worse, I will make an appointment with Dr. Anderson since my insurance will cover it.

I thank you guys for your recommendations.
Age: 31 Onset Age: 30 Symptoms: Dull pain in what I think is the prostate. Tingling in the perineum. Mild shooting pains in the penis. Burning/itching feeling in/around anus. Penis sometimes is very cold. Burning urination along with some drip issues. Mild pain in lower abdomen and back. Feet also tingle and/or have pain. Diagnosis: GP and Uro chronic prostatitis; 2nd Uro says Pudendal Neuralgia Helped By: hot baths, exercise, ejaculation, Preparation-H Worsened By: riding a bike, sitting, tobacco, and maybe spicy food?
Taking: Q-Urol, Acidophilus, Mens Multi-Vitamin
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Re: Pudendal neuralgia (Weiss)

Post by webslave »

The condition does wax and wane, but it's great that you're feeling better anyway.
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Re: Pudendal neuralgia (Weiss)

Post by popburner »

Just so everyone knows...Dr. Anderson is no longer at Stanford and has retired...
Age:29 | Onset Age:29 | Symptoms: ORIGINALLY - rectal pain, penis tip pain, perineal spasms, golf ball feeling in perineum, painful ejacualation ONGOING - rectal pain, penis tip hypersensitivity, urethral pain at beginning of urination, ejaculatory pain, burning skin around legs and buttox | Helped By: warm baths, NO catastrophic thinking, Physical Therapy; Stanford/Wise-Anderson Protocol; Mirtazipine (Remeron) for anxiety and sleep, dry needling of TPs (NOT injections), PAIN PSYCHOLOGIST (CBT and Commitment and Acceptance Therapy), diet changes - so far eggs are out doing an elimination diet now :) | Worsened By: ANXIETY, FEAR, STRESS, CATASTROPHIC THINKING,heavy weight lifting , sitting too long
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Re: Pudendal neuralgia (Weiss)

Post by Jay »

popburner wrote:Just so everyone knows...Dr. Anderson is no longer at Stanford and has retired...
Wow, that is a surprising loss. I wonder who will be taking over his role in the SP clinic.
I am not a physician. This is not medical advice. Consult your doctor!

Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.
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Re: Pudendal neuralgia (Weiss)

Post by neis »

Smith, J Nevin MD...his name was mentioned when I had a session with Tim Sawyer.
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Re: Pudendal neuralgia (Weiss)

Post by webslave »

popburner wrote:Just so everyone knows...Dr. Anderson is no longer at Stanford and has retired...
My information from Dr Wise is that Dr. Anderson is partially retired, but still seeing patients at Stanford part time.
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Re: Pudendal neuralgia (Weiss)

Post by housemzk »

For whatever its worth, my insurance company says he's accepting new patients at Stanford.
Age: 31 Onset Age: 30 Symptoms: Dull pain in what I think is the prostate. Tingling in the perineum. Mild shooting pains in the penis. Burning/itching feeling in/around anus. Penis sometimes is very cold. Burning urination along with some drip issues. Mild pain in lower abdomen and back. Feet also tingle and/or have pain. Diagnosis: GP and Uro chronic prostatitis; 2nd Uro says Pudendal Neuralgia Helped By: hot baths, exercise, ejaculation, Preparation-H Worsened By: riding a bike, sitting, tobacco, and maybe spicy food?
Taking: Q-Urol, Acidophilus, Mens Multi-Vitamin
housemzk
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Re: Pudendal neuralgia (Weiss)

Post by housemzk »

Just wanted to update everyone on my current status and recent visit to Dr. Weiss. Actually the visit was 3 weeks ago, but a family emergency delayed my update.

Since my last update, I have bought a donut seat, started stretching, taking Quercetin, and squatting when I go #2. Since using these 4 items, I'm literally symptom free.

The donut is cheap POS, but the seat relieves so much pressure in the perineum area. I used the Amazon.com link that's found on this message board. I took the donut on an 8 hour plane ride recently and I truly believe it saved me from a flare up. It's awkward as hell and sort of embarrassing to carry around though.

Every morning I've begun doing very simple stretches, such as, touching my toes, knees to my chest while laying down, and also pulling my ankle toward my chest while laying down. Very simple stretches, but I feel that stretching has had the greatest impact on my recovery. I try to stretch as much as possible thru out the day and before bed. I'll also add that using the elliptical machine as a warm up for running seems to reduce any sensation I have in the perineum while running. Stretching immediately after exercise almost eliminates any sensation in the perineum.

When I go #2, I no longer sit on the toilet seat. I do the squat like many others have mentioned on this board.

My visit with Dr. Weiss was smooth. With his hands and the various positions he had me in, he touched the nerve with little or no pain. I'm not sure what exactly he's doing with the nerve, but he could detect that my symptoms had reduced considerably. He did PT on me and that was it. He said in a few months I could possibly get back into lower body exercises and I should make an eventual full recovery. I've had PT only with Dr. Weiss and I'm at the point where I'll probably postpone any other visits.

Overall my experience with Dr. Weiss was positive. I’m feeling better and that’s all I can ask for. My gut tells me he views this website and maybe that’s having an impact on his treatment for us. That’s purely speculation of course, but again, I’m satisfied with my experience with him and I recommend him to anyone.

I hope newbies like myself pay attention to the valuable information that others have posted on here about their experiences. Thanks to you all.
Age: 31 Onset Age: 30 Symptoms: Dull pain in what I think is the prostate. Tingling in the perineum. Mild shooting pains in the penis. Burning/itching feeling in/around anus. Penis sometimes is very cold. Burning urination along with some drip issues. Mild pain in lower abdomen and back. Feet also tingle and/or have pain. Diagnosis: GP and Uro chronic prostatitis; 2nd Uro says Pudendal Neuralgia Helped By: hot baths, exercise, ejaculation, Preparation-H Worsened By: riding a bike, sitting, tobacco, and maybe spicy food?
Taking: Q-Urol, Acidophilus, Mens Multi-Vitamin
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Re: Pudendal neuralgia (Weiss)

Post by Hacksquat »

Housemzk, what stretches do you perform, except the two you mention?
Age: 41 Onset Age: 27 (dec 2006)Symptoms: Urethral burning, muscular pain and soreness around the base of my penis, perineum and muscles around my sitbones. Frequency, urgency, dribbling, general discomfort in the pelvis, decreased libido, tight levator ani (according to PT) and occasional levator- and sphincter spasms. Sometimes ache in penis, especially when erected. Latest addition is testicular pain (and epididymis). Also excretions of clear (prostatic?) fluid throughout the day as well as secretion in my urine. Varying power of urine stream. Redness on tip of penis and ballsack.Helped By: Positive thinking and controlling anxiety Worsened By: Stress, lack of sleep, heavy training (especially abs and legs), catastrophizing over this condition
housemzk
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Re: Pudendal neuralgia (Weiss)

Post by housemzk »

Hacksquat-

The only stretches I do are the ones that I mention in the previous message.

While standing up, I reach down to touch my toes and hold it.

This is one of the stretches I found on wiki:
Stretch includes bringing your knee to your chest on the compressed side while laying on your back. I do this 3 or 4 times per leg.

Also while laying on my back, I'll grab one ankle and pull it toward the opposite shoulder.

I do these thru out the day and it has really helped my situation.
Age: 31 Onset Age: 30 Symptoms: Dull pain in what I think is the prostate. Tingling in the perineum. Mild shooting pains in the penis. Burning/itching feeling in/around anus. Penis sometimes is very cold. Burning urination along with some drip issues. Mild pain in lower abdomen and back. Feet also tingle and/or have pain. Diagnosis: GP and Uro chronic prostatitis; 2nd Uro says Pudendal Neuralgia Helped By: hot baths, exercise, ejaculation, Preparation-H Worsened By: riding a bike, sitting, tobacco, and maybe spicy food?
Taking: Q-Urol, Acidophilus, Mens Multi-Vitamin
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