Hoping for a life without pain

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.
evilpog
Posts: 16
Joined: Tue Jan 13, 2015 7:56 pm

Hoping for a life without pain

Post by evilpog »

Hello,

I'm a 33 year old male whose been dealing with pelvic pain for nearly 2 years. It started suddenly on 4/14/2013 first with my testicles and within a few months had expanded to include multiple areas in the pelvis. At this time I have moving pain in my upper hip, lower abdomen, testicles, perineum, buttocks, and lower back. Since it's started I've received multiple diagnosis from chronic epdidymitis to chronic pelvic pain syndrome with the current diagnosis being pudendal neuralgia. I've tried multiple medications and have tried physical therapy and sacral injections. I have a running thread on the Prostatitis forum by the same name which details my journey over the last two years.

At this time I'm getting ready to try Cymbalta on top of Lyrica to see if I can get further relief while looking into seeing Dellon who my Neurologist is looking into. I'm hoping one day to get out of this pain, but not sure the direction and very scared of choosing the wrong approach only to end up worse off. I'll be posting to this thread to detail further my journey would appreciate feedback. It would be nice to get back on with a normal life.
Last edited by evilpog on Fri Mar 06, 2015 2:34 am, edited 1 time in total.
stephanies
Posts: 686
Joined: Mon Oct 25, 2010 3:07 am

Re: My Introduction

Post by stephanies »

Evilpog,

Welcome to the forum. I am sorry you are experiencing so much pain. Please take the time to search Dr. Dellon on this forum so you can read the reviews of members who have had experience with him so you can decide if and how to proceed. From what I have read, many have had negative outcomes from his surgeries and treatment, so that may be something to consider.

My best to you,
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
evilpog
Posts: 16
Joined: Tue Jan 13, 2015 7:56 pm

Re: My Introduction

Post by evilpog »

Thank you for the words of caution. I'm doing my best and trying to be diligent in my research, but there is so much conflicting opinions. I'm also running out of options and don't have access to a multi-disciplinary team to help ensure the diagnosis.
User avatar
Violet M
Posts: 6778
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Hoping for a life without pain

Post by Violet M »

Hey Evilpog,

It can be a real maze trying to figure out a diagnosis. Typically with pudendal neuralgia there is more than just one thing going on and the trick is to find the underlying cause. For instance someone could have irritation of the pudendal nerve but at the same time have SI joint dysfunction, a femoral acetabular labral hip tear, or other musculoskeletal problems. What type of physical therapy did you have?

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.
evilpog
Posts: 16
Joined: Tue Jan 13, 2015 7:56 pm

Re: Hoping for a life without pain

Post by evilpog »

Thank you Violet,

I've tried physical therapy for pelvic muscle dysfunction and myofascial release along with chiropractic. The therapist was good and I was glad for her support considering few pelvic therapist will treat men. I didn't feel it helped much, though can't say that with certainty. I've also tried Wise/Anderson protocol minus the paradoxical relaxation part.
User avatar
Violet M
Posts: 6778
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Hoping for a life without pain

Post by Violet M »

One thing that makes it difficult to determine if pudendal neuralgia (PN) is the original cause of PN-type pain and the primary generator of pelvic pain is that the pain associated with PN can cause the pelvic muscles to go into spasm and cause symptoms throughout the pelvis. At least that is what happened to me. History and clinical exam can help determine the diagnosis. Do you have any idea what might have precipitated this for you? Did your PT detect any pain along the course of the pudendal nerve when pressed on via the rectum?

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.
evilpog
Posts: 16
Joined: Tue Jan 13, 2015 7:56 pm

Re: Hoping for a life without pain

Post by evilpog »

My PT at the time did check the nerve, but it wasn't sensitive compared to the rest of the pain I was feeling. She did think the pelvic floor muscle were tight and used a probe to measure the tension of my anus which was something like 6 or 7 when she said 2 to 3 was normal. Still the physical therapy and massages didn't seem to help much.
evilpog
Posts: 16
Joined: Tue Jan 13, 2015 7:56 pm

Re: Hoping for a life without pain

Post by evilpog »

Cymbalta doesn't appear to be helping so thinking about my next steps. I'm currently taking 300mg of Lyrica twice a day; Wonder if I can increase that. Reading through the forums and some published papers I figure I'll ask to try Valium next and see about either getting a pudendal nerve block or 3T MRI (No clue where or how.).
User avatar
Violet M
Posts: 6778
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Hoping for a life without pain

Post by Violet M »

Higher doses of lyrica aren't recommended. http://www.rxlist.com/lyrica-drug/indic ... dosage.htm

There was a guy named Rick on this forum who was taking more. You can check out his post. http://www.pudendalhope.info/forum/view ... ica#p42405

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.
evilpog
Posts: 16
Joined: Tue Jan 13, 2015 7:56 pm

Re: Hoping for a life without pain

Post by evilpog »

Been a while since I last posted. I'm still dealing with my pain with not much luck getting it under control. Lyrica and Cymbalta didn't seem to work which doesn't justify they price continuing them. I'm trying gabapentin again, but doesn't appear it's help. They only them that helps partly in carbamazepine XR, but still doesn't control the pain throughout the day. I'm looking into trying a pudendal nerve block, but not sure where to go to get one performed. I live in Northwest Arkansas and my Neurologist doesn't know anybody in the area that performs pudendal blocks on men. Any recommendations?
Post Reply

Return to “WELCOME CENTER”