Diagnosis / SO happy to have found this forum!

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
davyboy
Posts: 9
Joined: Tue Apr 10, 2012 10:36 pm

Diagnosis / SO happy to have found this forum!

Post by davyboy »

Hello Everyone,

I am a 26 year old male.

I am so happy I have found this forum. I have felt like no one understands what I'm going through!

My whole experience started with waking up in the middle of the night with discomfort from an erection / sexual arousal. It wasn't extreme pain, but rather pressure when I became aroused. I found I couldn't ejaculate properly. It was actually after a weekend of skiing. I sought out a doctor and he told me I had prostatisis. He ran the series of tests (blood, urine all came back clean - STI's too). So currently, I am being treated for bacterial prostatisis but I am beginning to think that I do not have suffer from prostatisis but rather PNE or the milder form of it. I am currently on bactrim for the prostatisis and although my symptoms aren't as bad as they once were I'm still not convinced. It feels like there is something foreign in my pelvis region and I find myself clenching a lot and attempting to put pressure on it.

Anyways... How I got here...

I began to notice a corelation between exercising and my pain. This brought me to seeking out other explanations for my discomfort in the pelvis area and why it has yet to disappear. I have spent the last year or so exercising strenuously. I do a home workout called INSANITY. Tons of lunges, bends, abdomen exercises, squats, hip movements, and running on the spot. I should also note that I spent last summer landscaping, doing tons of heavy lifting. I spent my teenage years racing motorcycles as well. I also played hockey for 12 years.

I should also note I had an office job at the university... sitting for 8 hours a day.

My complete symptoms are as follows:

- some erectile dysfunction (not much anymore)
- some testicle pain (particularly on the right side) when sitting (i have a job where i sit a lot)
- some pressure in my prostate area (it was diagnosed as inflamed - the last time the doctor checked it no longer was)
- a lot of tightness in my right hip
- numbness, a heavy feeling in my scrotum
- some numbness in penis occasionally
- cold feelings in penis
- pain in prostate area occasionally
- some burning in my abdomen

There was one particular day where I rushed myself to the ER because it felt like I was being electrocuted in my perineum / penis. It felt like a spasm! The only thing that helped was a suppository. It stopped the spasms. The doctor called it referred pain from my prostatisis but it made very little sense to me! It felt like I was being electrocuted, I had never experienced anything like that in my life.


I should note that I noticed a very strange sensation in my pelvis a few months back after doing my first session of hot yoga (it subsided the next day). It felt like the all the tubes and nerves in my urinary area had been twisted up (I no longer have this feeling).

I also have noticed occasionally a strange tingle in my perineum / groin when I would leap up from a plank position exercising.

Any insights would be greatly appreciated. I hope someone can help because at this point I really feel like I have gotten the run around from doctors.

I am in Alberta, Canada and I do not think there are any doctors here who specialize in pelvis problems.

I'm off to see a urologist next week but I am lacking faith that he will help me.
Lola2
Posts: 22
Joined: Tue Mar 13, 2012 1:51 pm

Re: Diagnosis / SO happy to have found this forum!

Post by Lola2 »

Davidboy,

So weird ..my symptoms atrted after finishing Insanity too!
i am much better now,when did your symptoms atrted ,how ling have you been like this?
Maybe it is just that your nerve is irritated(pudendal) and it needs time to heal by itself.Mine have been better ,but now i am 25 lbs heavier! due to Neurontin and the lack of exercises,ha! but who cares? i'd rather be fat than having this horrible pain.

Take care

Lola2
davyboy
Posts: 9
Joined: Tue Apr 10, 2012 10:36 pm

Re: Diagnosis / SO happy to have found this forum!

Post by davyboy »

I've had the strong symptoms for roughly 6 weeks or so.

The only other issue I recall was the strange feeling in my groin with certain movements.

I don't think my case is severe because I am not in enough pain to stop me from doing most day to day tasks. For instance, I still can sit (I alter between my knees and shifting weight) for most of the day.

Is it possible to still skip rope?
White Falcon
Posts: 51
Joined: Wed May 04, 2011 9:42 pm
Location: Vancouver Canada

Re: Diagnosis / SO happy to have found this forum!

Post by White Falcon »

Welcome to the forum, Davyboy. Sounds like your vigorous exercise routine may have contributed to your painful problems. There are quite a few weightlifters and exercise buffs posting here, including me. In my case, probably the worst exercise was using the inverted leg press at the gym.

I just recently got a book by a physio named Amy Stein, Healing Pelvic Pain. I think it has helped me quite a bit so far. You may want to check it out, and follow her exercise routine.

Generally, anyone who has this pain for a short time and is younger, tends to heal better. The sooner you get this looked after, the better your outcome. You should not ignore this and you should stop doing anything that aggravates the pain! Take it from me - I had provoked pain off and on for years, and just carried on. Now, I am really disabled and have constant pain. You are right to think that the doctors are clue-less. No one warned me about this possibility. I should have had physio and dealt with my condition years ago. Now I am in so much constant pain, physio is intolerable...

Anyhow, you should be able to find a physio who specializes in pelvic pain by checking their professional association's website, or ask the urologist to recommend someone. These physios usually handle incontinence and ED, which the urologist should be familiar with. If I were you, I would avoid having a cystoscopy (where the dr. sticks a scope up your urethra to your bladder), unless the dr can give you a darn good reason for it. It's their favorite thing to do. I was referred to a urologist who did his cystoscopies at the hospital. My first appt was supposed to be at the hospital for this invasive procedure. I hadn't even had a consult or met the guy. My urinating issues are minor, and I said no way to this painful procedure. I was also told that I would not be allowed to use my reclining lawnchair in the waiting room due to no space, but a reclining wheelchair would be acceptable. (I didn't have my wheelchair at that time, so I never went to him.)

I'm glad that your situation isn't too disabling at this point. Just be careful not to let doctors make it worse with useless tests, etc. I hope you find a good physio and get better soon.
Provoked pain with intercourse 1980-2008
Intermittent flare-up beg. March 2008
Constant pain since Sept. 2009
CT guided nerve block Apr 2010 (made pain much worse)
Hysterectomy July 2010
Other issues: fibromyalgia, migraines, Lyme, gastritis, MCS
davyboy
Posts: 9
Joined: Tue Apr 10, 2012 10:36 pm

Re: Diagnosis / SO happy to have found this forum!

Post by davyboy »

I am going to a physiotherapist on Tuesday.

I am starting to believe that my problem is CPPS and not an issue of the pudendal nerve.
User avatar
Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Diagnosis / SO happy to have found this forum!

Post by Violet M »

Davyboy, as I understand it, pudendal nerve irritation or entrapment can be one of the causes of CPPS.

How did your PT appointment go?

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.
davyboy
Posts: 9
Joined: Tue Apr 10, 2012 10:36 pm

Re: Diagnosis / SO happy to have found this forum!

Post by davyboy »

Hi Violet,

I apologize for not responding sooner.

I have been going to PT and doing stretches and external work at home. Its been extremely helpful. I have flare ups. Its a long road ahead but I believe this will be the key to my recovery. Nothing invasive. I am favoring conservative measures at this point.
User avatar
Violet M
Posts: 6651
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Diagnosis / SO happy to have found this forum!

Post by Violet M »

Great! I'm glad it's helping and I completely agree with you about trying conservative therapies.

Best of luck!

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.
stratts
Posts: 46
Joined: Sat Jun 18, 2011 2:27 am

Re: Diagnosis / SO happy to have found this forum!

Post by stratts »

Hi davyboy,

Your story is the story of my life.

Read my posts and you will see i also have a long history of heavy training in the Gym, and have very similar symptoms to yourself.

I do have a very severe Lumber Spine injury injury which is also a possible contributing factor to may pain.

My issues have been going on for 10 years and i have been in horrific pain. It has pushed me to the limit both physically and mentally.

My advise would be to try and reduce your intense exercise, particularly the ones which involve hip flexing.

I have tried to keep fit and train but have had to finally accept that i will have to change. This has really tested me because like yourself i have always kept in really good shape and it kills to see yourself go down hill!!

All i can say to you is push, push and push for answers and don't be disheartened when doctors don't seem to have a clue. Unfortunately not many doctors in the world are experienced in this area.

You must do your own research and investigation, its taken me 10 years and i am still not cured. You need to find the best possible choice of doctor and push to see them. If it means you visiting your local MP or pushing your GP, then do it. Unfortunately you will have to persist and persist. You are in the best place here, lots of people have a lot of good advise and are willing to help.

Welcome to this site my friend!
Take care
Stratts
Post Reply

Return to “WELCOME CENTER”