So Desparate Someone Please Help! Don't Know What To Do.

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.

So Desparate Someone Please Help! Don't Know What To Do.

Postby Trainer » Tue Feb 13, 2018 6:39 pm

Hi

I am a 38 year old male who is a personal trainer and have been active my whole life. I am 5’10 175 pounds.

When I was around 22 so about 15 years ago I started getting a lot of groin pain that radiated down to the testicle. At the time I was taking Propecia for my hair so looking back I do not know if that contributed or was the cause. I was also doing a lot of running at the time as well. I believe I had hip impingement as well.

After being bounced around for a year of going to doctor to doctor looking for solutions I was convinced it had to be some sort of hernia. Even though there was no bulge and no doctor could find one. However a surgeon said he might have felt something and agreed to operate since I was running around in circles. He did operate and said he found a small hernia, however looking back I am not sure if he actually found one and somewhat question it.

The surgery did take away the testicle pain and groin pain. I don’t know if it was from the surgery or from all the down time the surgery caused me to take off.

The groin pain eventually would come back and I have been dealing with it for many years now. At least 5 years. It is something that I figured I would just have to live the rest of my life with and I was fine with that. However things would get much worse.

About a year and half ago I was training hard and dieting. I would get a lot of groin pain but would just train through it and it would come and go. I was also doing a lot of unilateral leg work. My legs seemed to get really stiff, but I would train through it. My hip would bother me when I would try to stand up from sitting, I would slowly have to stand up and eventually get going. Once I would walk around it was fine. I also hurt my low back when I was squatting around this time. So now Im thinking I have a hip problem, a groin problem that may or may not be caused by my hip, and a back problem. These were fine and I could live with but things even got worse.

This is where things get bad…

Around this time I was deadlifting one day and felt a pain in my perineum. I was worried as I didn’t know what muscle or what could have caused this. A week later I was squatting and felt the same sensation. Around this time I was playing floor hockey and felt a sharp perineum pain that almost brought me to my knees.

After the first injury to the perineum I started getting bladder issues. I now leak after going to the bathroom, I leak a bit with certain movements, I sometimes don’t feel empty after bathroom, sometimes I feel have to go when I don’t, and urethra irritation.

Also after this I sometime feel ball in rectum and feel weird with certain movements in rectal/perineal area. A year after all of this started I could barely walk for some reason the sports doc said it was either a labral tear or SI joint issues. This resolved on its own. Sometimes now I get pins and needles from the waste down when i stand or sit. This has absolutely affected my quality of life and put me in depression.

I have been tested for prostatitis, had a cystoscopy have been seen by many doctors and urologists with no answer. My family doctor from day 1 said it is a pelvic floor issue or damage from those deadlifts or years of lifting. I do believe all of my urinary symptoms are from something structural based on the events. Maybe neurological from spine or MS. I do not know if it is from direct damage to pelvic floor, if pelvic floor dysfunction due to hip impingement, labral tear, a disc issue when I hurt my back (MRI said torn disc but nothing pushing on nerves). Maybe its Perineal Nerve Entrapment. I also feel maybe something gave way like a prolapse or something.

I have read that problems/damage to hip can cause pelvic floor/bladder problems/perineum problems.

List of Symptoms:

groin pain
stiff hips
rectal pain sometimes
when exertion can feel in rectum/perineum
hip pain sometimes
back pain sometimes
bladder issues
hip impingement
bladder issues worse at night
overactive bladder
numbness/tingling perineum
when nervous feel like could easily pee myself
intermittent pins and needles from waste down. Seems to be worse at night after standing
urethral pain/irritation
I sometimes get really cold and shake for some reason like a blood sugar problem but no diabetes.
bladder issues seem to get worse after i do lower body things like lift things up or leg exercises. Which i try to avoid now.
I can feel posterior chain movements un perineum
When i ride recumbent bike and exert it bothers my bladder and can feel leaking/letting go sometimes. Exertion for upper body like incline press seems fine. Chinups sometimes bother.


List of Tests

blood tests
digital rectal exam
cystoscopy
MRI of pelvis and low back ( MRI said mild to moderate bulge with annular tear of L5-S1 causing no neural compression)
MRI of hip looked good but was not done with contrast and power of 1.5 T.


Treatments so far:

pelvic floor physiotherapy
supplements
stretches


Suspected causes:

Disc Problem
MS
Hip labral tear/impingement
Perineal Nerve Entrapment
Pelvic floor dysfunction/damage
Prolapse of some kind
Non Bacterial prostatitis CPPS


Doctors I have seen:

My GP
2 Urologists
Sports Med Doc



I am at the end of the rope with this and really don’t know where to go to figure out what is causing this. I feel I need to get evaluated by a Neurologist to rule out anything with nerves.

I am at the point of going to Mayo/Cleveland Clinic for some sort of answer.

I am also very close to going to see Doctor Myers and Doctor Coleman in Philadelphia as they are the best when it comes to the groin and hip. If the problems come from the hip or groin/pelvic floor then they will have the best answers for me.

Coming from Canada this will be out of pocket and these guys are not cheap especially if surgery is involved. At this point I really feel like I am running out of options and I know I cannot continue living like this.

Any help is appreciated. This is pure hell that no one seems to know the answer. I feel for all of you that are going through this!
Trainer
 
Posts: 1
Joined: Tue Feb 13, 2018 6:19 pm

Re: So Desparate Someone Please Help! Don't Know What To Do.

Postby Tara S » Tue Feb 13, 2018 7:31 pm

Hi there -
Sounds like you are having quite the frustrating time.
I'm in Canada as well - Unfortunately many of my doctors are gynecologists so I am not much help there.
If you are anywhere near the Ottawa region I have the name of an awesome pelvic physiotherapist as well as an osteopath/physiotherapist who were able to provide many answers and steer me in the right direction for seeking further treatment.
Hang in there!
Tara
Tara S
 
Posts: 5
Joined: Mon Feb 12, 2018 5:57 pm

Re: So Desparate Someone Please Help! Don't Know What To Do.

Postby Violet M » Wed Feb 14, 2018 5:33 am

Hi Trainer,

It can be really difficult to pin pelvic pain to one thing. The pelvis and hips work together as a whole and when one thing goes wrong typically it's not the only thing that goes wrong. So you have to treat the whole pelvis. I was doing weight training when my problems started. I had chronically strained ligaments that were impinging on the pudendal nerves but along with that I had SI joint dysfunction, piriformis syndrome and some other issues. Sounds like you have some hip involvement along with the pelvic floor issues. It may take more than one type of treatment to really get yourself back to a low level of pain.

I had some symptoms similar to yours, others different. I had the bladder symptoms and perineal pain. Also had trouble walking and increased bladder and perineal pain from leg activity.

Some people with labral tears/hip impingements along with pudendal neuralgia choose to deal with the hip problem first because they feel hip surgery is less risky than PNE surgery. But at this point, it seems like you need more diagnostics and opinions from specialists before you can really make an educated decision. I know it's expensive to see the specialists but it may be worth it in the end because they might be the only ones who can really help you. I had to pay thousands of dollars for my surgery but it was worth every penny of it. There have been PN patients who were able to get their treatment/surgery in the US covered by the Canadian healthcare system -- particularly if there is no specialist in your country who performs the type of treatment you need.

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: 5515
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: So Desparate Someone Please Help! Don't Know What To Do.

Postby April » Sat Feb 17, 2018 10:26 pm

Hi Trainer,

Like Violet, my pn was also caused by exercise. I was doing intensive work on a step machine (trying to push myself much harder than normal), and the pain was delayed, so unfortunately, I continued to do it (no doubt, making it worse) for about 5 months without knowing it was the cause. So, I think you're right to suspect that the weight lifting and exercise may be the cause.

April
April
 
Posts: 167
Joined: Fri Jun 19, 2015 9:59 am

Re: So Desparate Someone Please Help! Don't Know What To Do.

Postby stephanies » Sun Feb 18, 2018 6:10 am

Trainer,

Did you surgeon use mesh in your hernia repair? I have read accounts of mesh that can cause problems years later, including a wide range of issues some similar to ones you seem to have. I have heard good reviews of Dr. Coleman and know someone who had hip surgery with him in NY. If you are interested in Mayo, I understand there can be a lengthy approval process for getting in there, so you may want to start the ball rolling and then you can always cancel if you make progress somewhere else. Please keep us posted on what you find out.

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.
stephanies
 
Posts: 524
Joined: Mon Oct 25, 2010 3:07 am


Return to WELCOME CENTER

Who is online

Users browsing this forum: No registered users and 2 guests