Advice re. exercise

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.
MC1000
Posts: 13
Joined: Thu Dec 17, 2015 4:37 pm

Re: Advice re. exercise

Post by MC1000 »

Yeah, it makes sense, except that i have no symptoms at any point behind the perineum. It's all at the front. Indicates that the only injury is compression, which logically you'd assume would stop developing once the source of the compression - ie the saddle - was removed from the equation. Which it was, 3 months ago.

I wonder if it's the sertraline I've been prescribed for my depression that's suddenly made it worse. Started taking it three days ago... Just too many unknowns.
User avatar
Violet M
Posts: 6714
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Advice re. exercise

Post by Violet M »

If the perineum is included then you could be talking about 2 branches of the PN -- the dorsal penile and the perineal, not including the inferior rectal. I never had any issues with the inferior rectal either. Healing can take time but you can also develop a pattern of pain signals to the brain that is still there even after healing takes place.

Is the sertraline making your pain or your depression worse?

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.
MC1000
Posts: 13
Joined: Thu Dec 17, 2015 4:37 pm

Re: Advice re. exercise

Post by MC1000 »

Nothing about this makes sense.

Notwithstanding the fact that the compression has been removed from the equation, and yet still seems to be getting worse, there are logical inconsistencies as well with the compression of the dorsal nerve.

My glans has a good level of sensation, whereas my foreskin does not. Both the same nerve branch, right? Why then could it be that one part of the associated anatomy has sensation whereas the other does not?

Another thing is, how do you differentiate neuralgia from rhe positive pain of nerve regeneration? About once or twice a day i have some shooting burning pains through my penis that last for a few seconds but don't cause me any problems. Otherwise, just numbness, and occasionally a slight burning sensation in the perineum for a few minutes at a time and at the point of saddle compression (again, it's only slight and doesn't cause me any problems). This corresponds with what the urologist told me would probably happen in the fullness of time when i start to experience healing - but given the individuality of expression and the subjectivity of experience, there's no way of knowing that this symptom is what he was referring to. Given the trajectory of the last few months, I'm not holding out a lot of optimism.
User avatar
Violet M
Posts: 6714
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Advice re. exercise

Post by Violet M »

One neurologist told me that the nature of the pain can vary depending on which nerve fibers in the nerve are affected -- not just which branches of the nerve.

I'm not sure how you could tell whether a shooting pain is associated with regeneration or not. It may be a matter of wait and see -- and assess whether other symptoms are improving also.

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.
Bolex
Posts: 12
Joined: Sun Mar 31, 2019 10:32 pm

Re: Advice re. exercise

Post by Bolex »

Hi just came across yourself and was wondering what your history is I was a keen cyclist for two years untill I suddenly developed problems in January this year and initially was in denial and carried on cycling to my own wisdom making things worse.

My past medical history

Testicular torsion 1985
Circumscission 1991
Testicular benign cyst 1992
Familial hypercholesterolaemia diagnosis 2010
Raynaud's disease 2010
Cyst hoffa fat pad right knee
Bilateral plantar fascititus 2016
Chronic anal fissure 2016
Acetabular cyst on left hip 2016
Right calcaneal heel nerve pain December 2018

Medication
Atorvastatin 40mg note
Lactulose 10ml bd

Two months ago I had been cycling for an hour one evening uneventfully .When I finished my ride and dismounted I noticed that I could not feel my penis and had a sharp buzzing type sensation from the penis . The following week I attempted to cycle again and after 30 minutes was experiencing severe penis pain on the bike with urge to urinate. I had been wearing an athletic sports suport due to slight testical pain I had been experiencing in preceding few weeks which may itself have been caused by my cycle bib trousers rubbing on the testis ? . The pain from the penis I found eventually would continue even off the bike and I would describe it as crushing and achy predominantly from the penis . Unusually I then after a further week began to experience some strange tingly sensations from the genitalia which I can only describe as arousal like which caused me great distress! .After searching online I came across a condition called persistent sexual genital arousal which although affected females in the literature I was myself was experiencing similar symptoms at times .I also began to experience slight discomfort from my coccyx and pubic bone. My general practitioner diagnosed prostatitis another doctor linked the calcaneal heel pain I had had four weeks prior to this with the genitalia symptoms I was having.It is worth noting that the symptoms last when sitting and standing although I think sitting slightly aggregates both . I also believe bending over causes the penis pain to aggregate some 1 hour after doing so . I have no discomfort upon urination or discharge and can achieve erection though ejaculation sensation seems altered( duller) . It is worth mentioning at this point that I have had an anal fissure for three years causing daily bleeding and spasms for which I have had a recent Botox under general anaesthetic .The bleeding has ceased but defecation still remains painful .I spoke to the consultant colerectal surgeon and questioned the possibility of the anal spasms from the fissure causing trauma to the pudential nerves.He disagreed and felt the culprit could be a spinal nerve compression and is now arranging an MRI. I have been cycling for two years and increased to a total of 3 hours a week in the last eight months.My saddle had a cutout and a bike fit with pressure mapping showed no unusual pressure being applied to the perineum area .Interestingly I have lost a stone in weight three months leading up to the event as a result of a change in diet my current weight is 10 stone .The only thing out of the ordinary leading up to the event that I noticed in the preceding months was very very slight discomfort post urination .My urine dipstick which I did myself was normal.I have also had a sigmoidoscopy which was normal but no urological testing. It has been suggested to me to try a recumbant bicycle which are quite rare in the UK where the rider sits in a reclined position on a normal type seat and pedals with feet slightly in the air .However I am frightened this may aggregate things as I even tried some light swimming and it flared up my symptoms. Sorry for the length of this description .I am very anxious as these symptoms especially the arousal are deeply concerning and have tested my own sanity as I am frightened of being ridiculed .
In summary my presenting symptoms are penis crushing pain and when absent tingly arousal symptoms which thankfully does not cause erection and are not linked with sexual thoughts stress makes symptoms worst . Interestingly my Raynaud's disease has always been made worst with stress due to the vasoconstriction of blood vessels from fingers causing them to turn blue. This makes me believe the arousal symptoms are nervous system related.i am a health professional myself so understand medical terminology.
Other symptoms slight occasional coccyx pain
Slight discomfort only when preinium region pressed
April
Posts: 615
Joined: Fri Jun 19, 2015 9:59 am

Re: Advice re. exercise

Post by April »

Hi Bolex,

Many of your symptoms do sound like pn, and biking is a common cause, and as you've probably also gathered from reading this site, men can get the pgad too. Have you asked any of your doctors about pn? Have you seen a physical therapist? Is the MRI going to focus just on the lumbar spine? It probably makes sense to ask that the pelvis be included too, and if you will include the pelvis, I think it makes sense to try to get it done on a 3T machine and with Dr. Hollis Potter's protocol (she's a radiologist who has an MRI protocol for zeroing in on pudendal nerve). You can get that protocol from by emailing her clinic and requesting it (just google her name to get contact info). You mentioned that even light swimming seemed to create a flare. I think that almost all leg movements (especially when I was upright) aggravated my pn, so I think it is common to get flares from even light exercise.

April
Bolex
Posts: 12
Joined: Sun Mar 31, 2019 10:32 pm

Re: Advice re. exercise

Post by Bolex »

Hi unfortunately I live in the UK so would not be able to travel to the USA for an MRI as when I looked up Dr Potter she is based in the USA it would be beyond my finances . the colerectal surgeon I saw reckoned my penis pain was as a result of compression from the spine ? I'm unsure if MRI will only include spine ? That he has requested
stephanies
Posts: 685
Joined: Mon Oct 25, 2010 3:07 am

Re: Advice re. exercise

Post by stephanies »

It is good that your doctor has requested an MRI to look at your spine as PN can originate with issues there. Is your doctor looking at the lumbar area as well as the full sacrum? I hope you are able to figure out what is causing your problems.

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.
April
Posts: 615
Joined: Fri Jun 19, 2015 9:59 am

Re: Advice re. exercise

Post by April »

Hi Bolex,

Sorry for the confusion. I wasn't suggesting that you come to the U.S. I was just suggesting that the MRI that you have done in the UK follow Potter's protocol. Dr. Potter shares her protocol even with people who are not getting their MRI done at her clinic. I have the protocol so you can also pm me with your email address, and I can send it to you that way. But, as Stephanies notes, it's also good to have the lumbar spine included. I would request the 3T MRI that covers the lumbar, sacrum, and pelvis (though the sacrum may be automatically included when a pelvis MRI is ordered), and I also think it's helpful that the radiologist knows where your pain is (that's usually included with the order), so s/he can focus on those areas on the images.

April
Post Reply

Return to “WELCOME CENTER”