Not sure how to go about it

PNMLT, EMG, SSEP, and other Nerve function testing.
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Not sure how to go about it

Postby sickofthis » Wed Mar 11, 2015 12:00 am

Hi everyone, I'm not sure how to go about pursuing treatment for this life altering condition. Im a 27 year old male, my story is a long one but ill sum it up including only important details.
It all started in September of 2007 when I had a bad cough and strained myself with what felt like a pulled muscle directly in my penis, that subsided after a minute but left a lingering pain. After a week or two of no relief I went to see a doctor who said it was a groin strain and would heal in no more than a month. After months went by I visited a urologist who said the same thing, eventually took an ultrasound and found nothing. I went to multiple urologists looking for answers only to be told it was a strain, prostatitis, or the worst one "its in your head". I was in very good shape prior to this mishap but due to the pain I was forced to stop working out and spent most of 2008 and 2009 in pure agony with no doctor able to give me a diagnosis to this horrible pain that could only be described as stabbing, aching, sometimes feeling like an internal bruising on the left side of my penis, testicle, under my thigh, traveling down the whole backside of my left leg. It was constant, there was no position that made it feel better, it felt just as bad standing or laying as it did to sit. All my erectile function was normal but it hurt like hell to get an erection and even more to have sex. I luckily had a girlfriend by my side who was very caring and understanding to the situation as we had been together since 2004. I had multiple ultrasounds, catscans, MRIs, prostate exams, all returning nothing but a slightly enlarged disk on my left side which I was told had nothing to do with the pain.

I would look all over the internet trying to find a diagnosis for my problem as I was sick of lying in bed all day, missing time from work, and just being plain miserable in general. I eventually came across pudendal neuralgia and was terrified to think this is what I had because most of the symptoms matched minus the pain from sitting.
Eventually I visited a neurologist who prescribed me neurontin which didnt really help at all. Even sometimes painkillers like vicodin would be given but those barely touched the pain. One of the many uros I saw referred me for physical therapy in 2009 with a young woman who was very unfamiliar with PNE but she did her best to learn about it and give me stretching exercises that did very little to ease my pain. After being in the gym with her for a month or 2 I decided to just start working out again bearing through the pain to try to live a normal life again. I continued this and it almost seemed like after a few months the pain started subsiding maybe from a constant 7 to a 6 or sometime 5. I remember making a call to Dr. Mark Conway's office around this time as I live in CT so he was the closest PNE doc to me at the time. I had a phone consultation with him but I stupidly never visited him because I really didnt want to believe I had PNE just from straining while coughing. I should also mention in late 2009 I had a kidney stone which had to be removed because it was to big to pass but I feel this is mostly unrelated but still worth mentioning I suppose.

I was then referred to a pain clinic in April 2010 where I received a cortisone injection near my tailbone( I forget the exact location as I'd have to contact the doc to get the info) but I remember feeling immediate relief, not complete, but loads better than before. Things got much better in 2010 but there was still lingering pain which still kept me from enjoying life so I would still visit urologists to make sure there wasn't something I was missing and in September 2010 everything changed for the worse when one of them gave me a prostate exam and pushed their finger very hard and uncomfortably leaving me feeling numb for the rest of the day. I figured maybe I was just sore or something but within the next few days I noticed the I was now dribbling alot after urinating and I was having very weak erections which I hadnt experienced in the previous years of pain. Slowly I noticed the pain subsiding but the erectile and urinary problems not changing at all. I told the doctor who did the prostate exam and he assured me it couldn't possibly be from that but im positive that's when all these new problems started.

I started taking cialis to help with erections which helped me somewhat but I noticed i had severe loss of sensation and sex became very unenjoyable. It was so weird, it was like the doc pushed a button inside me that relieved my pain but stopped my normal pelvic function. I was still with my girlfriend and for the next few years just got used to not having sex often but living a virtually pain free life. As i was able to return to normal human activity like athletics and whatnot I just continued to live my life although the diminished feeling in my penis was always in the back of my head. I didnt have alot of money for the ever expensive cialis so sex was becoming very irregular causing tremendous problems with me and the love of my life who I planned to marry. I should also mention that I had been a regular marijuana user throughout this entire process even before the initial problem in 2007. I think I just got used to not having much of a sex life but having a normal painfree life otherwise. I barely thought about my problems until it came time to have relations with my girl and I would get depressed but the marijuana usually cheered me up. I spent the next 4 years of my life with the same symptoms, no change really, penis dribbling after urination, weak erections with diminished sensation, and constipation pretty regularly which I contributed to the marijuana habit. I knew none of these symptoms were in my head as even if I tried masturbating I couldnt get a stiff erection, just about 75 percent and it would drop fast without constant stimulation. Prior to 2007 I never had any problem getting erect and even with the pain I experience up to 2010 I never had erectile problems, just pain that prevented me from wanting sex.

In October of 2014, my girlfriend couldnt take the lack of sex which led to lack of affection and me being depressed all the time and she left me for someone else which was the probably the worst feeling i've ever had in my life as we'd been together for over 10 years and I thought we would marry and have a family together. After a month or 2 of grieving I finally got back on the dating scene and met someone who I liked very much all the while still being aware of my erectile problems. I just tried not to think about it but the first time we went to have sex I couldnt get it up and this was earth shattering because I knew it wasnt in my head. Now I feel I NEED to do something to address this problem or Ill be alone forever which would probably lead to suicide as there's nothing more that I want than a family. Im seeing a urologist on the 19th of this month but I don't even know what to tell him honestly. I plan on calling Dr. Mark Conway to see if I can pay him a visit and maybe he can give me the proper tests to determine if this really is a pudendal nerve disorder, but I feel like it has to be as most of the signs are there. I have state insurance currently so i'd probably have to get something better even thought money is an issue in my life Id be willing to do anything to fix this problem. I should also mention that Ive quit the marijuana use for about a week now and will continue to stay off it to see if that helps improve my function as I noticed my penis started to seem even weaker when I was high. Im not a junkie or anything, pot was the only drug I ever really used, I dont even drink often, and am in school pursuing a bachelors in accounting.

I read some serious horror stories on this site about surgeries and it really doesnt seem like something I'd wanna jump right into but I really dont know what to do or how to go about it, If anyone here has any advice for me I would appreciate it more than anything as this site really seems to be the only place to go where there are people who understand what im going through. I was 21 when this all started and this condition really has ruined what were supposed to be the best years of my life, and ruined my relationship with a girl I loved more than life itself. I just need to know the next step I should take.
I saw that there are now places in NY where I could go which there werent back in 08-09, but I feel Dr. Conway is the most experienced doc close to me and I would probably like to see him if possible. To reiterate, I went from having the worst pain ever to now virtually pain free, but my urinary, erectile, and bowel movements are all haywired. At this point I dont know which situation was worse but i do know I just want my penis to work again
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Re: Not sure how to go about it

Postby Violet M » Wed Mar 11, 2015 4:55 am

Sickofthis, welcome to the forum. Is there any way you can find out what type of injection it was that you had in 2010? It just might shed a little bit of light on your possible diagnosis.

The thing about PN is that often there is more than one thing that triggers it. My theory is that there may be an underlying problem that just shows up when something such as a prostate exam triggers symptoms -- not that the exam was the cause of the problem but it could have been the straw that broke the camel's back that triggered the disease to manifest itself. For instance maybe a person has a musculoskeletal predisposition to developing PN and a combination of working out and straining to cough might be triggers, sort of like when someone has an underlying disease of asthma but there are certain things that trigger symptoms -- such as pet dander or smoke, etc.

It sounds like you are on the right path seeing Dr. Conway to help rule PN in or out. If you could see a PT who is experienced with PN that might be another good option to try.

Best,

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.
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Re: Not sure how to go about it

Postby sickofthis » Wed Mar 11, 2015 6:40 am

Thanks for the reply, yeah im gonna return to the pain clinic and find out exactly what kind of injection it was as it did help with the pain tremendously, as I said after the pain decreased I began to ignore my symptoms that came after that as they dont interupt daily life much, I always felt like either it healed or the nerve died which would explain my diminished function but I will post as soon as I find out. This website is great as far as information goes.
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Re: Not sure how to go about it

Postby Suefordham » Wed Dec 09, 2015 6:33 pm

Hi Sick of this, I am wondering how you have progressed; my son's story is very similar to you and would really like to hear what you have found in your journey. Hope you have found some relief.
Thanks
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Re: Not sure how to go about it

Postby stephanies » Thu Dec 10, 2015 4:00 am

Hi Sue,

If you would like, you can post your son's story in the welcome section of the forum. Hopefully then many people will read it and maybe have some unease and suggestions for you to pass on to him.

Sincerely,
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.
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