Introduction

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
Post Reply
Howdy
Posts: 2
Joined: Thu Dec 21, 2023 1:11 pm

Introduction

Post by Howdy »

.. I’ve been dealing with pelvic pain and other issues for about 9 years I can pinpoint when it started. I had a band habit of really engaging my legal muscle right before orgasm. Like I was trying to stop my urine flow. I used to find that it made my orgasm extra intense. One day I did it I felt something either tear, or spasm or something in my pelvis. Just to the right of my genitals. It’s been a journey since then

First things first I find my orgasims are basically non existent now. Urine flow is weaker, I dribble urine in my pants. My penis itself isn’t nearly as sensitive. I have painful erections. When I’m holding my pee while I sleep and I wake up my urine flow is very weak. My seamen doesn’t shoot out nearly as well as it did

I often get a dull ache in my pelvis, sitting can be painful. My seamen is often yellow which is really weird

Often when I cough I have to hold a spot around my penis to not get that “jarring feeling” in the pelvis. It can ache after that If I sit in a recliner with my legs up I can’t do it for very long because it starts to ache down there

I’ve been t urology, neurology and nothing. Had an mri on back they say it’s all good. PSA numbers are good. I had a prostate ultrasound and it was said to be very bulky

Some days I’m crippled by this. Not pain but the mental toll. Luckily my wife is my rock and beyond supportive. I’m just sick of not being able to get a clear understanding of wtf happened to cause all this???? I just want to feel normal again. Don’t get me wrong somedays I feel normal but little things can flare it up.

Exercising doing bench press especially incline can really flare it up. I guess that’s where there is weight being supported in the pelvis

Can anyone relate?
Thanks for your time
User avatar
Violet M
Posts: 6593
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Introduction

Post by Violet M »

Hello Howdy,

Can't relate exactly since I'm not a guy but your statement about the bench press caught my eye because I developed PNE from weightlifting. Also the achy feeling you mentioned reminded me of what I experienced. Is your pain primarily on that side where you felt the initial tear on the right side? Mine was significantly worse on one side.

Not sure what all you have tried yet, but if you haven't already, since you had an injury you might want to consider an evaluation by a PT who is experienced in pelvic pain and can evaluate you for proper pelvic alignment, pain with touch pressure on the pudendal nerve via the rectum, pelvic floor muscle tension, and evaluate the status of your pelvic ligaments since ligaments are notorious for being strained and not healing well since they don't have a great blood supply --- and whatever else they think needs evaluating.

You can go to the main website at pudendalhope.org and check out a list of doctors and PT's who treat and diagnose pudendal neuralgia. There is one doctor on the list from NYC, Hollis Potter, who has developed a software protocol for looking at the pelvic nerves specifically on the MRI. There are some places across the US who have borrowed her protocol for software settings on the MRI, so you could call her office to find out if they know anyone near you who does that.

Does the urologist think there is any significance to the bulky prostate?

Kudos to your wife for being supportive. It can make a huge difference to have supportive family members. Wishing the two of you all the best as you go through this together.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
Posts: 6593
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Introduction

Post by Violet M »

Howdy, you might find this article interesting: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7203779/
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Howdy
Posts: 2
Joined: Thu Dec 21, 2023 1:11 pm

Re: Introduction

Post by Howdy »

Violet, thanks so much for the information and messages. How bad was your pain out of 10? Pain isn’t my biggest symptom not even close. The sexual dysfunction is what causes the most distress. Would surgery even help me at this point after having issues for so long?

Yes, if I do get pain it’s worse at that initial site that I noticed something go wrong.

Violet M wrote: Mon Apr 15, 2024 3:20 am Hello Howdy,

Can't relate exactly since I'm not a guy but your statement about the bench press caught my eye because I developed PNE from weightlifting. Also the achy feeling you mentioned reminded me of what I experienced. Is your pain primarily on that side where you felt the initial tear on the right side? Mine was significantly worse on one side.

Not sure what all you have tried yet, but if you haven't already, since you had an injury you might want to consider an evaluation by a PT who is experienced in pelvic pain and can evaluate you for proper pelvic alignment, pain with touch pressure on the pudendal nerve via the rectum, pelvic floor muscle tension, and evaluate the status of your pelvic ligaments since ligaments are notorious for being strained and not healing well since they don't have a great blood supply --- and whatever else they think needs evaluating.

You can go to the main website at pudendalhope.org and check out a list of doctors and PT's who treat and diagnose pudendal neuralgia. There is one doctor on the list from NYC, Hollis Potter, who has developed a software protocol for looking at the pelvic nerves specifically on the MRI. There are some places across the US who have borrowed her protocol for software settings on the MRI, so you could call her office to find out if they know anyone near you who does that.

Does the urologist think there is any significance to the bulky prostate?

Kudos to your wife for being supportive. It can make a huge difference to have supportive family members. Wishing the two of you all the best as you go through this together.

Violet
User avatar
Violet M
Posts: 6593
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Introduction

Post by Violet M »

Howdy wrote: Fri May 10, 2024 1:59 am Violet, thanks so much for the information and messages. How bad was your pain out of 10? Pain isn’t my biggest symptom not even close. The sexual dysfunction is what causes the most distress. Would surgery even help me at this point after having issues for so long?

Yes, if I do get pain it’s worse at that initial site that I noticed something go wrong.
Pain started out at 2-3 out of 10 but eventually it went to 7 - 8. Since recovering from surgery, it's 0 most of the time but occasionally flares to a 2-3 if I do something stupid.

Sexual dysfunction can be distressing for sure. I don't know whether surgery would be the answer for you. I think it would be wise to have a clearer diagnosis before considering any type of surgery. Have you seen a physician who specializes in pudendal nerve issues yet? I know how exhausting it can be, going to doctors all of the time, especially if you have to travel out of state.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
adelphos2
Posts: 10
Joined: Sat Jan 15, 2022 9:13 pm

Re: Introduction

Post by adelphos2 »

I second the recommendation to see a good pelvic PT. you may want to look for one here: https://hermanwallace.com/list-of-certi ... ctitioners

From your story (how it started and how you use external bracing when coughing), I think you did have a pelvic injury (tendon avulsion, muscle tear, etc...) that has not healed. Not all these types of injuries can be seen on MRI. A PT should be able to help narrow down the structure involved for further study (like transperineal ultrasound) and/or treatment.
Post Reply

Return to “WELCOME CENTER”