Male suffering with PNE/PN for 3 years now
Re: Male suffering with PNE/PN for 3 years now
Joe- So sorry to hear about your PGAD symptoms. I know how awful they can be! I haven't worn pants since this started three months ago and spend many days using numbing cream and ice. Its awful! There are some meds that have helped dampen the symptoms...neurontin and Xanax being most helpful. I am probably going to try an SSRI SSNRI as well. Unfortunately, ANY activity causes a flare up for me. I went swimming with my kids yesterday and am paying for it now. I used to be an avid Crossfitter. Being completely inactive has been a hard change, but its just not worth it I hope you get a break soon. The symptoms do seem to wax and wane.
Re: Male suffering with PNE/PN for 3 years now
oKAY..........had PT for the first time in 4 months and i am in the worst burning pain i have ever experienced. Do not remember PT being this bad.
She pressed on 3 or 4 spots that were excruciating towards the front of my pelvic floor(Her finger was pressing towards the front of my body, not down. If i have trigger points, could those be the cause of all these PNE symptoms?Most likely not right?
She said i still have very good control over my pelvic floor muscles, which i guess is good. She seemed to be more excited about this than i was.
But from the top of my buttcheeks to the inner thighs, it feels like i'm sitting on hot coals. Bladder feels like it has acid in it.
She also pressed on my piriformis muscle and that gave me a weird pain/zing. It actually made my whole body spasm when she pressed on it. Not too painful, just an uncontrollable spasm.
Chiro couldn't really find anything wrong, except he went to bend my right leg towards me when i was laying on my back, and my whole leg started shaking and convulsing, because my hamstring felt so tight(Like ratcheting as described below)
I am experiencing really bad CFS symptoms lately, starting to scare me a little bit. Tried to do pushups which i normally can do 30-50, after about 4 my whole body was shaking.
Also my muscles seem to have this ratcheting effect. For example when i bend over, coming back up, my whole back shakes as if my muscles are turning on and off mid movement.
I am having a myriad of other symptoms than PNE, which i am starting to wonder if there is an overarching problem causing all this, or if these are PNE symptoms
She pressed on 3 or 4 spots that were excruciating towards the front of my pelvic floor(Her finger was pressing towards the front of my body, not down. If i have trigger points, could those be the cause of all these PNE symptoms?Most likely not right?
She said i still have very good control over my pelvic floor muscles, which i guess is good. She seemed to be more excited about this than i was.
But from the top of my buttcheeks to the inner thighs, it feels like i'm sitting on hot coals. Bladder feels like it has acid in it.
She also pressed on my piriformis muscle and that gave me a weird pain/zing. It actually made my whole body spasm when she pressed on it. Not too painful, just an uncontrollable spasm.
Chiro couldn't really find anything wrong, except he went to bend my right leg towards me when i was laying on my back, and my whole leg started shaking and convulsing, because my hamstring felt so tight(Like ratcheting as described below)
I am experiencing really bad CFS symptoms lately, starting to scare me a little bit. Tried to do pushups which i normally can do 30-50, after about 4 my whole body was shaking.
Also my muscles seem to have this ratcheting effect. For example when i bend over, coming back up, my whole back shakes as if my muscles are turning on and off mid movement.
I am having a myriad of other symptoms than PNE, which i am starting to wonder if there is an overarching problem causing all this, or if these are PNE symptoms
Re: Male suffering with PNE/PN for 3 years now
Hi Joe,
I hope the burning flare after physio is starting to settle now. Ice is your friend. One tip I have found for this is put some uncooked rice in a ziplock bag in the freezer. it conforms to the shape of your body better than ice blocks. Physio on tight muscles does not seem to agree with any of us. I think doing PT is a bit like putting 'the cart before the horse' in our cases and the fact that it causes so much burning is a big clue that something 'structural' needs fixing first. Have you managed to get a MRI yet? It is scary to have weird symptoms all over your body and not know what is causing them. For my two cents worth - and I am not an expert by any means on this - just my own years of searching for what the hell is going on in my body and a nursing background - I reckon this has come from years of MUSCLES having to compensate somewhere for what ligaments should be doing. From a musclo-skeletal perspective, if you have pain, you have a 'movement' problem. Typically we are lying still for X-rays and MRI's so they aren't very helpful for diagnosing a movement problem. Though MRI's are essential to rule out serious conditions like MS and motor neuron disease first. When muscles are compensating in a major load bearing area like the pelvis for years, they will eventually become tightened, compressing nerves and blood vessels and causing pain and reffered pain. This article gives a good explanation of the anatomy of pelvic and related ligaments and you can see how a movement problem in the pelvic area will affect the entire body. http://www.physio-pedia.com/Sacroiliac_ ... rm_Closure I hope the link works OK- I am not very tech savvy I'm afraid. Also PN is a relatively new entity - worse luck for us- and all Chiros and PT's are NOT created equal. Neither are any of the best medical 'brains'. Be careful who you allow to work on your body. Did the Chiro you saw not pick up SIJ/lumber problem on your tight hamstring leg raise? Also from my perspective - and it is only my opinion - I think it is pointless and painful to bash away at pelvic floor muscles without fixing mechanical/bone/joint abnormalities first.
Jos
I hope the burning flare after physio is starting to settle now. Ice is your friend. One tip I have found for this is put some uncooked rice in a ziplock bag in the freezer. it conforms to the shape of your body better than ice blocks. Physio on tight muscles does not seem to agree with any of us. I think doing PT is a bit like putting 'the cart before the horse' in our cases and the fact that it causes so much burning is a big clue that something 'structural' needs fixing first. Have you managed to get a MRI yet? It is scary to have weird symptoms all over your body and not know what is causing them. For my two cents worth - and I am not an expert by any means on this - just my own years of searching for what the hell is going on in my body and a nursing background - I reckon this has come from years of MUSCLES having to compensate somewhere for what ligaments should be doing. From a musclo-skeletal perspective, if you have pain, you have a 'movement' problem. Typically we are lying still for X-rays and MRI's so they aren't very helpful for diagnosing a movement problem. Though MRI's are essential to rule out serious conditions like MS and motor neuron disease first. When muscles are compensating in a major load bearing area like the pelvis for years, they will eventually become tightened, compressing nerves and blood vessels and causing pain and reffered pain. This article gives a good explanation of the anatomy of pelvic and related ligaments and you can see how a movement problem in the pelvic area will affect the entire body. http://www.physio-pedia.com/Sacroiliac_ ... rm_Closure I hope the link works OK- I am not very tech savvy I'm afraid. Also PN is a relatively new entity - worse luck for us- and all Chiros and PT's are NOT created equal. Neither are any of the best medical 'brains'. Be careful who you allow to work on your body. Did the Chiro you saw not pick up SIJ/lumber problem on your tight hamstring leg raise? Also from my perspective - and it is only my opinion - I think it is pointless and painful to bash away at pelvic floor muscles without fixing mechanical/bone/joint abnormalities first.
Jos
Re: Male suffering with PNE/PN for 3 years now
Well i finally got a call back from the radiologist who said, he is going to get the 3T protocol early next week. I am assuming this means i am in fact going to be getting it, as why would they get the protocol only to not test me.
Also got a call from Neuro who said she is familiar with the condition and is going to do everything she can to get me some relief or at least a partial diagnosis.
And i see Infectious disease next week as well, who will hopefully test me for every bacteria in existence, and hopefully settle this positive lyme test once and for all.
These days i seem to be suffering with way more back pain than anything at this point. Because i am standing all day.
The burning and numbness has severely lessened, but now i feel like i can barely hold myself up because my lower back feels so stiff and achy.
Still have the golfball in rectum feeling( But i read this could be a trigger point, not just PNE, and i most certainly have trigger points as when my PT presses on them the pain is a 10)
Still notice the sitting pain, but it;s only when i lean back on my coccyx, i never had terrible perineum pain. It's a strange pain as well, feels more like a weak muscle, or something.
Still have PGAD although its been coming and going, no pun intended.
Urination doesn't burn anymore, but my stream is definitely hindered a bit, and i don't feel like i am emptying completely. Drinking 8-10 glasses a day and feel like i am peeing maybe 1-2 glasses at most.
Still have sexual dysfunction, not sure if this is mental at this point or physical.
Also another weird symptom i always forget to mention, when i have a BM, i pee like 10 times while i am on the toilet. When i first go. ANd then as i am waiting, every minute or so, a few squirts of urine.
I don't seem to have the classic PNE symptoms or at least maybe i have a milder version, i have been reading this forum everyday, page after page. And i feel so terrible how much pain some of you are in. I am not religious myself but i think about you guys on a daily basis. I hope my thoughts bring some good karma your way.
Starting to wonder since i don't excruciating pain, but more annoying symptoms, maybe mine really are related to Pelvic floor problems. But who knows. Guarding and anxiety have also become my worst enemy. Due to my chronic and debilitating anxiety, i developed a habit of guarding, which is when you squeeze your PC muscles involuntarily.
Also got a call from Neuro who said she is familiar with the condition and is going to do everything she can to get me some relief or at least a partial diagnosis.
And i see Infectious disease next week as well, who will hopefully test me for every bacteria in existence, and hopefully settle this positive lyme test once and for all.
These days i seem to be suffering with way more back pain than anything at this point. Because i am standing all day.
The burning and numbness has severely lessened, but now i feel like i can barely hold myself up because my lower back feels so stiff and achy.
Still have the golfball in rectum feeling( But i read this could be a trigger point, not just PNE, and i most certainly have trigger points as when my PT presses on them the pain is a 10)
Still notice the sitting pain, but it;s only when i lean back on my coccyx, i never had terrible perineum pain. It's a strange pain as well, feels more like a weak muscle, or something.
Still have PGAD although its been coming and going, no pun intended.
Urination doesn't burn anymore, but my stream is definitely hindered a bit, and i don't feel like i am emptying completely. Drinking 8-10 glasses a day and feel like i am peeing maybe 1-2 glasses at most.
Still have sexual dysfunction, not sure if this is mental at this point or physical.
Also another weird symptom i always forget to mention, when i have a BM, i pee like 10 times while i am on the toilet. When i first go. ANd then as i am waiting, every minute or so, a few squirts of urine.
I don't seem to have the classic PNE symptoms or at least maybe i have a milder version, i have been reading this forum everyday, page after page. And i feel so terrible how much pain some of you are in. I am not religious myself but i think about you guys on a daily basis. I hope my thoughts bring some good karma your way.
Starting to wonder since i don't excruciating pain, but more annoying symptoms, maybe mine really are related to Pelvic floor problems. But who knows. Guarding and anxiety have also become my worst enemy. Due to my chronic and debilitating anxiety, i developed a habit of guarding, which is when you squeeze your PC muscles involuntarily.
Re: Male suffering with PNE/PN for 3 years now
Joe,
Good to hear your are connecting with some helpful medical people. Hope they can find the answers and treatment to start removing your pain.
Janet
Good to hear your are connecting with some helpful medical people. Hope they can find the answers and treatment to start removing your pain.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: Male suffering with PNE/PN for 3 years now
Joe,
Glad to hear you are getting more help medically. Pelvic floor PT caused dreadful flareups for me too and it took about a week for things to calm down afterward.
We've had many discussions on the PNE forums about the chicken and the egg theory. Which came first?.....the tense muscles impinging on the nerve causing pudendal neuralgia or a damaged/entrapped nerve causing pudendal neuralgia and making the muscles go into spasm. Everyone has to figure this out for themselves because each case is different.
http://www.ncbi.nlm.nih.gov/pubmed/9934946
J Clin Psychopharmacol. 1999 Feb;19(1):67-85.
Effects of SSRIs on sexual function: a critical review.
Rosen RC, Lane RM, Menza M.
Source
Department of Psychiatry, University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School, Piscataway 08854, USA.
Abstract
Sexual problems are highly prevalent in both men and women and are affected by, among other factors, mood state, interpersonal functioning, and psychotropic medications. The incidence of antidepressant-induced sexual dysfunction is difficult to estimate because of the potentially confounding effects of the illness itself, social and interpersonal comorbidities, medication effects, and design and assessment problems in most studies. Estimates of sexual dysfunction vary from a small percentage to more than 80%. This article reviews current evidence regarding sexual side effects of selective serotonin reuptake inhibitors (SSRIs). Among the sexual side effects most commonly associated with SSRIs are delayed ejaculation and absent or delayed orgasm. Sexual desire (libido) and arousal difficulties are also frequently reported, although the specific association of these disorders to SSRI use has not been consistently shown. The effects of SSRIs on sexual functioning seem strongly dose-related and may vary among the group according to serotonin and dopamine reuptake mechanisms, induction of prolactin release, anticholinergic effects, inhibition of nitric oxide synthetase, and propensity for accumulation over time. A variety of strategies have been reported in the management of SSRI-induced sexual dysfunction, including waiting for tolerance to develop, dosage reduction, drug holidays, substitution of another antidepressant drug, and various augmentation strategies with 5-hydroxytryptamine-2 (5-HT2), 5-HT3, and alpha2 adrenergic receptor antagonists, 5-HT1A and dopamine receptor agonists, and phosphodiesterase (PDE5) enzyme inhibitors. Sexual side effects of SSRIs should not be viewed as entirely negative; some studies have shown improved control of premature ejaculation in men. The impacts of sexual side effects of SSRIs on treatment compliance and on patients' quality of life are important clinical considerations.
http://www.medscape.com/viewarticle/769813
(You will have to create a username and password to see the article) Here is an excerpt:
"Sexual dysfunction is a common adverse effect of antidepressants, particularly selective serotonin reuptake inhibitors (SSRIs) and serotonin norepinephrine reuptake inhibitors. The prevalence of sexual dysfunction has been reported to be about 60% among patients taking SSRIs.[1] Impaired sexual function includes decreased desire or libido, impaired arousal, erectile dysfunction, and delayed or absent orgasm."
Violet
Glad to hear you are getting more help medically. Pelvic floor PT caused dreadful flareups for me too and it took about a week for things to calm down afterward.
We've had many discussions on the PNE forums about the chicken and the egg theory. Which came first?.....the tense muscles impinging on the nerve causing pudendal neuralgia or a damaged/entrapped nerve causing pudendal neuralgia and making the muscles go into spasm. Everyone has to figure this out for themselves because each case is different.
I can't tell you the mechanism of action but SSRI's can cause impaired arousal and decreased ability to orgasm and may relieve the symptoms of PGAD in some people.scope wrote:Out of interest, why do ssri's help this condition?
http://www.ncbi.nlm.nih.gov/pubmed/9934946
J Clin Psychopharmacol. 1999 Feb;19(1):67-85.
Effects of SSRIs on sexual function: a critical review.
Rosen RC, Lane RM, Menza M.
Source
Department of Psychiatry, University of Medicine and Dentistry of New Jersey, Robert Wood Johnson Medical School, Piscataway 08854, USA.
Abstract
Sexual problems are highly prevalent in both men and women and are affected by, among other factors, mood state, interpersonal functioning, and psychotropic medications. The incidence of antidepressant-induced sexual dysfunction is difficult to estimate because of the potentially confounding effects of the illness itself, social and interpersonal comorbidities, medication effects, and design and assessment problems in most studies. Estimates of sexual dysfunction vary from a small percentage to more than 80%. This article reviews current evidence regarding sexual side effects of selective serotonin reuptake inhibitors (SSRIs). Among the sexual side effects most commonly associated with SSRIs are delayed ejaculation and absent or delayed orgasm. Sexual desire (libido) and arousal difficulties are also frequently reported, although the specific association of these disorders to SSRI use has not been consistently shown. The effects of SSRIs on sexual functioning seem strongly dose-related and may vary among the group according to serotonin and dopamine reuptake mechanisms, induction of prolactin release, anticholinergic effects, inhibition of nitric oxide synthetase, and propensity for accumulation over time. A variety of strategies have been reported in the management of SSRI-induced sexual dysfunction, including waiting for tolerance to develop, dosage reduction, drug holidays, substitution of another antidepressant drug, and various augmentation strategies with 5-hydroxytryptamine-2 (5-HT2), 5-HT3, and alpha2 adrenergic receptor antagonists, 5-HT1A and dopamine receptor agonists, and phosphodiesterase (PDE5) enzyme inhibitors. Sexual side effects of SSRIs should not be viewed as entirely negative; some studies have shown improved control of premature ejaculation in men. The impacts of sexual side effects of SSRIs on treatment compliance and on patients' quality of life are important clinical considerations.
http://www.medscape.com/viewarticle/769813
(You will have to create a username and password to see the article) Here is an excerpt:
"Sexual dysfunction is a common adverse effect of antidepressants, particularly selective serotonin reuptake inhibitors (SSRIs) and serotonin norepinephrine reuptake inhibitors. The prevalence of sexual dysfunction has been reported to be about 60% among patients taking SSRIs.[1] Impaired sexual function includes decreased desire or libido, impaired arousal, erectile dysfunction, and delayed or absent orgasm."
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.
Re: Male suffering with PNE/PN for 3 years now
Well i thought i would update.
Have been seen by pretty much every doctor there is and have had everything ruled out from MS to Lyme, to any other disorder that can be seen by blood, or MRI/xray of the spine, brain, and pelvis. Not really sure where else to go from here.
Everything is coming back normal.
My symptoms are changing a bit.
I now have an incredibly sensitive penis head, that is so sore and sensitive, even my underwear hurt when it touches it.
My penis is also decreased in sensitivity on the shaft to where i almost don't even feel like i have one
I am able to get an erection, but it goes away after about 10 minutes or so. Can still ejaculate, in half erection state.
have a pain in my left inguinal area, almost always feels like i have a runners cramp or something, or a pulled muscle.
Still have lower back pain, and when i sit i am not really feeling pain, but more of an odd sensation in my sacrum/coccyx. It almost feels like pgad in my coccyx if that makes sense, like the muscles are really weak and struggling.
I have random pains all over my pelvic area but none are excruciating, just a little pain, more annoying than anything.
My piriformis is extremely sore, did the tennis ball stretch, and it was killing me.
And per usual still have the feeling that something is in my rectum, and an irresistable feeling to flex my pelvic floor. Periodically throughout the day i have to remember to relax it as it naturally just wants to tighten up.
Seeing a new PT next week at MGH who specializes in Pelvic floor problems so i am hoping she can maybe be of some help.
I dont know what else to do next, i am really hesitant on nerve blocks, dont have the money for an MRN.........
Thanks everyone
Have been seen by pretty much every doctor there is and have had everything ruled out from MS to Lyme, to any other disorder that can be seen by blood, or MRI/xray of the spine, brain, and pelvis. Not really sure where else to go from here.
Everything is coming back normal.
My symptoms are changing a bit.
I now have an incredibly sensitive penis head, that is so sore and sensitive, even my underwear hurt when it touches it.
My penis is also decreased in sensitivity on the shaft to where i almost don't even feel like i have one
I am able to get an erection, but it goes away after about 10 minutes or so. Can still ejaculate, in half erection state.
have a pain in my left inguinal area, almost always feels like i have a runners cramp or something, or a pulled muscle.
Still have lower back pain, and when i sit i am not really feeling pain, but more of an odd sensation in my sacrum/coccyx. It almost feels like pgad in my coccyx if that makes sense, like the muscles are really weak and struggling.
I have random pains all over my pelvic area but none are excruciating, just a little pain, more annoying than anything.
My piriformis is extremely sore, did the tennis ball stretch, and it was killing me.
And per usual still have the feeling that something is in my rectum, and an irresistable feeling to flex my pelvic floor. Periodically throughout the day i have to remember to relax it as it naturally just wants to tighten up.
Seeing a new PT next week at MGH who specializes in Pelvic floor problems so i am hoping she can maybe be of some help.
I dont know what else to do next, i am really hesitant on nerve blocks, dont have the money for an MRN.........
Thanks everyone
Re: Male suffering with PNE/PN for 3 years now
Also if i were to get a nerve block and it were successful would my feeling in my penis come back, and would the pain in the head go away?
What if i still had symptoms after the nerve block, would that mean this might not be pudendal related?
What if i still had symptoms after the nerve block, would that mean this might not be pudendal related?
Re: Male suffering with PNE/PN for 3 years now
Hello
Was just wondering everyones opinions on an MRN. Is it worth it? Its going to cost me 2000 dollars out of pocket to get it. Do people usually find this test helpful at helping to diagnose this issue. I just would hate to spend 2k and get a totally normal scan.
Thanks
Joe
Was just wondering everyones opinions on an MRN. Is it worth it? Its going to cost me 2000 dollars out of pocket to get it. Do people usually find this test helpful at helping to diagnose this issue. I just would hate to spend 2k and get a totally normal scan.
Thanks
Joe
Re: Male suffering with PNE/PN for 3 years now
Hi Joe,
I can't advise on MRN or whether the cost justifies it. My gut feeling is that it would be a waste of money. But I say that with tongue in cheek as I could be wrong. So I will bow to an expert.
At the mo your current symptoms sound very like mine. So would I let some doc give me a nerve block injection now? No way! Reason is I don't believe it would work and it could even make things worse. Which is not what I want and I'm sure you feel the same.
It strikes me that according to other reports from people who have had nerve block injections that really it's a stab in the dark. I believe a Dr should be able to tell you a success rate so that you can make an informed choice. Saying it might help is not good odds.
I can't advise on MRN or whether the cost justifies it. My gut feeling is that it would be a waste of money. But I say that with tongue in cheek as I could be wrong. So I will bow to an expert.
At the mo your current symptoms sound very like mine. So would I let some doc give me a nerve block injection now? No way! Reason is I don't believe it would work and it could even make things worse. Which is not what I want and I'm sure you feel the same.
It strikes me that according to other reports from people who have had nerve block injections that really it's a stab in the dark. I believe a Dr should be able to tell you a success rate so that you can make an informed choice. Saying it might help is not good odds.