I am desperate for any advice or being put in the right direction to professionals in the UK current very unusual presenting symptoms .I am a 37 year old male who works as a registered nurse
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. 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
Intermittent crushing, ache from penis
Arousal type symptoms when above pain not present
Slight coccyx pain
No pain when sat down like other members talk of with pn just flare up of the arousal symptoms which also increase with stress
Unusual symptoms
Re: Unusual symptoms
Hi Bolex,
I think you are on the right track getting an MRI -- to make sure there isn't something obvious in the lumbosacral area that is causing your symptoms. You may also want to ask that they include the lumbosacral plexus and the pelvic areas. I don't know if there are any radiologists in the UK who would consider contacting Dr. Hollis Potter in New York to find out the protocol she uses for MRI's in patients with pelvic pain. Do you know if your MRI will be 3T or 1.5T? Given your symptoms of PGAD you may want to ask that they give special attention to checking whether you have tarlov cysts.
Regarding the anal fissure, I think it is possible that if you were experiencing pain, that it could have caused the pelvic floor muscles to go into spasm and that can irritate the pudendal nerve. There are some excellent pelvic floor PT's in the UK who could examine you via a digital (with a finger) rectal exam to determine if you have tenderness along the course of the pudendal nerve, which could be an indication of pudendal nerve irritation. My experience with PT's is that they can be very knowledgeable about the pelvic floor anatomy so it might be helpful to at least get evaluated by a good PT.
I don't know if the acetabular cysts on your hip could be a contributing factor. You can do a search on Lernica's posts on this forum on the topic of femoral acetabular impingements. Sometimes this type of problem can contribute toward pelvic pain.
You also have a history of exercise which can be one of the triggers of pudendal neuralgia, especially cycling. Whether or not you have pudendal neuralgia caused by a nerve entrapment is something you would need to get more diagnostics on to determine. I don't know if you want to try a pudendal nerve block for diagnostic purposes but it might give you some valuable information. If activity aggravates your symptoms, you have to be a little suspicious that there is some type of mechanical problem going on. For me, it was ligaments impinging on the pudendal nerve and exercise triggered nerve irritation. Often it flared up several hours or the following day after activity. You are correct that sitting is often a problem for people with PN. Initially I did not have pain with sitting but had primarily aching pain and PGAD. Eventually it developed into sitting pain also.
For some immediate relief of the arousal and urinary symptoms, you may want to ask your doctor about trying an antidepressant medication. Some of them dampen sexual arousal symptoms. An SSRI, escitalopram (lexapro), took about 75% of those symptoms away for me. It basically helped me survive temporarily while I was seeking the right treatments. Tricyclics work for some people. Antidepressants are powerful drugs so if you ever decide to go off of them you should wean off slowly. Some people get relief with gabapentin or pregbalin. If you are having trouble sleeping, you could add some clonazepam at night.
Most of what you read on the internet says PGAD isn't very treatable. I know people, including myself, who were successfully treated. Part of the secret is to figure out the root cause and I think you are on the right track with that. Try to stay hopeful. I think with the right treatments you will get better.
Violet
I think you are on the right track getting an MRI -- to make sure there isn't something obvious in the lumbosacral area that is causing your symptoms. You may also want to ask that they include the lumbosacral plexus and the pelvic areas. I don't know if there are any radiologists in the UK who would consider contacting Dr. Hollis Potter in New York to find out the protocol she uses for MRI's in patients with pelvic pain. Do you know if your MRI will be 3T or 1.5T? Given your symptoms of PGAD you may want to ask that they give special attention to checking whether you have tarlov cysts.
Regarding the anal fissure, I think it is possible that if you were experiencing pain, that it could have caused the pelvic floor muscles to go into spasm and that can irritate the pudendal nerve. There are some excellent pelvic floor PT's in the UK who could examine you via a digital (with a finger) rectal exam to determine if you have tenderness along the course of the pudendal nerve, which could be an indication of pudendal nerve irritation. My experience with PT's is that they can be very knowledgeable about the pelvic floor anatomy so it might be helpful to at least get evaluated by a good PT.
I don't know if the acetabular cysts on your hip could be a contributing factor. You can do a search on Lernica's posts on this forum on the topic of femoral acetabular impingements. Sometimes this type of problem can contribute toward pelvic pain.
You also have a history of exercise which can be one of the triggers of pudendal neuralgia, especially cycling. Whether or not you have pudendal neuralgia caused by a nerve entrapment is something you would need to get more diagnostics on to determine. I don't know if you want to try a pudendal nerve block for diagnostic purposes but it might give you some valuable information. If activity aggravates your symptoms, you have to be a little suspicious that there is some type of mechanical problem going on. For me, it was ligaments impinging on the pudendal nerve and exercise triggered nerve irritation. Often it flared up several hours or the following day after activity. You are correct that sitting is often a problem for people with PN. Initially I did not have pain with sitting but had primarily aching pain and PGAD. Eventually it developed into sitting pain also.
For some immediate relief of the arousal and urinary symptoms, you may want to ask your doctor about trying an antidepressant medication. Some of them dampen sexual arousal symptoms. An SSRI, escitalopram (lexapro), took about 75% of those symptoms away for me. It basically helped me survive temporarily while I was seeking the right treatments. Tricyclics work for some people. Antidepressants are powerful drugs so if you ever decide to go off of them you should wean off slowly. Some people get relief with gabapentin or pregbalin. If you are having trouble sleeping, you could add some clonazepam at night.
Most of what you read on the internet says PGAD isn't very treatable. I know people, including myself, who were successfully treated. Part of the secret is to figure out the root cause and I think you are on the right track with that. Try to stay hopeful. I think with the right treatments you will get better.
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: Unusual symptoms
Hi thanks for the reply .just saw my physio today and she's decided there is nothing more she can do so is referring me to women's pelvic floor specialist at my local hospital .she tried accupuncture with me but only helped for few hours . these arousal like symptoms are worse than pain and frightening. I started to bleed yesterday from my fissure again and the passing of a stool has again become horrific .I have read that some peoples fissures do not heal as they have a different anal sphincter pressure. the fissure was caused after I had my tonsils out 3 years ago unfortunately I was taking co codamol and we have a high disabled toilet in my bungalow which in hindsight I believe was the culprit causing me to rip when I got constipated prior to that iv never had any issues. There is an operation to permanently relax the sphincter by cutting the muscle with a small risk of incontinence 10percent which surgeons don't like to do. Sounds like I will have to have another Botox under general anaesthetic but I can't keep having them. I even stupidly tried starving myself a year ago so I would not have to go to the toilet and I blacked out after 30 hours .had a heart monitor after this which came back normal.im a very tense person which does not help and when stressed my Raynaud's flares up my fingers go blue iv had this since the age of 25 I'm now 37 . I also struggle maintaining my temperature well. The collectoral surgeon did say to me that my weight loss over last few months may have impacted on my anal canal size causing problems as well I'm now 10 stone always struggled with putting on weight . My local hospital has a permanent MRI and one that travels in a lorry to reduce waiting lists I spent a day in there when I trained to be a nurse but unsure of strength I know London has a 7 Tesla unit for research .I'll have to try and find out.
Re: Unusual symptoms
Yes, I understand about the PGAD. It is a different kind of torture. Hopefully some of those medications I suggested will help.
When you see the pelvic floor specialist, they should be able to tell you if your pudendal nerve is tender along the course of the nerve and also what pelvic muscles are in spasm, if any.
That is very difficult about the fissure. I guess worst case scenario you would have to have a colostomy to maybe allow it to heal but that would be extreme. Are you still having problems with constipation? If so, there are things you can do to keep your stool the consistency of applesauce -- such as magnesium citrate or miralax. It seems like it is very important for you not to strain right now.
Violet
When you see the pelvic floor specialist, they should be able to tell you if your pudendal nerve is tender along the course of the nerve and also what pelvic muscles are in spasm, if any.
That is very difficult about the fissure. I guess worst case scenario you would have to have a colostomy to maybe allow it to heal but that would be extreme. Are you still having problems with constipation? If so, there are things you can do to keep your stool the consistency of applesauce -- such as magnesium citrate or miralax. It seems like it is very important for you not to strain right now.
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: Unusual symptoms
Hi a colostomy involves major surgery and is only done when part of the intestine needs to be removed for example with bowels cancer, bowels obstruction or diseases of bowel . I could have the sphincter cut to relax the muscle but slight risk of incontinence so rarely done. Though there were days I would have wellcomed a collestomy to spare the pain .iv contacted two prominent doctors in the uk one a Dr Michael durtnell apparently a world known chiropractor he said to me that my symptoms sound like pudential neuralgia and that anal spasms can aggregravate the pudential nerve but not cause permant damage although the cycling may have made things worse for me trouble is very expensive to see him .Today I'm just getting the arousal symptoms but only when I am stressed I am finding this very peculiar almost out of this world ! How many males I wonder have had this?? Is it really rare !! Though I have come across people that have had limbs removed and they still feel there limbs is still there and feel pain in non existent feet??
Re: Unusual symptoms important update Hope still
Male 37 years old
Posting an update
Unfortunately I developed a right sided iguinal hernia 2 weeks ago after coughing all night possibly bronchitis no doubt as a result of extremes stress my symptoms have caused me
I no longer seem to be having the crushing like pain in my penis however I have it appears mainly just pgad primarily when sat down. The symptoms started to improve but after some light front crawl swimming symptoms flared up. I only recently was able to breach the subject with my GP I work as a nurse so I knew they would take me seriously.He is now arranging an MRI after fighting 3 months to get one with the colorectal surgeon who completely dismissed me and believed my anal fissure was improved though I now have a lumlp in my anus query haemorrhoid. was told to live with it.
I am due to make the long 400 mile round trip to harbourne physio in Birmingham this Thursday which just so happens to be down the road from my nan who died few months ago! the male pelvic physio apparently has worked with a Dr Ruth Jones.I was told that they may typically see 1 patient with pgad a week from all over the UK.I pray to God they can help me. It's like I'm living in an alternative reality where I can not comprehend that this could possibly happen to the human body.I also confided in a Freind who trained as a doctor and once briefly trained with a local leading colorectal surgeon now retired and he was very concerned at what was going on with me but remained baffled. My surgeon has refused to operate on my hernia.i have occasional testical pain that feels like I am being strangled had torsion of testis as child so been told would have to see a urologist I also have enlarged vein going all the way across testcals which presents different to a varicocelle had it for a few years and the vein can at times get very engorged and painful. I believe in hindsight that the cause of the pgad is
1 .chronic straining for 4 years with anal fissure with extreme treppidation b4 emptying the bowels and consequential spasm
2. Taking up cycling 2 years ago which may have pushed things too far though I was able to ride pain free untill that fateful night where I got off bike and felt electrical numbness in my penis although in hindsight for a year leading up to this I had extremely low discomfort after passing using which I ignored if only I could have known
Also had a weird one in a million encounter with someone local to me on Facebook who I was buying something off turns out his wife knew Dr Ruth Jones in random conversation and advised she is well regarded was very surreal moment !maybe I'm being told something .Iv experienced a few almost angelic experiences in my life which I cant explain almost like someone is guiding me maybe this is one of them .I know one thing if I get over this pgad iv decided to devote myself to the most important things in lifemy family as well as helping others as it's definitely put my life into massive perspective!!
Posting an update
Unfortunately I developed a right sided iguinal hernia 2 weeks ago after coughing all night possibly bronchitis no doubt as a result of extremes stress my symptoms have caused me
I no longer seem to be having the crushing like pain in my penis however I have it appears mainly just pgad primarily when sat down. The symptoms started to improve but after some light front crawl swimming symptoms flared up. I only recently was able to breach the subject with my GP I work as a nurse so I knew they would take me seriously.He is now arranging an MRI after fighting 3 months to get one with the colorectal surgeon who completely dismissed me and believed my anal fissure was improved though I now have a lumlp in my anus query haemorrhoid. was told to live with it.
I am due to make the long 400 mile round trip to harbourne physio in Birmingham this Thursday which just so happens to be down the road from my nan who died few months ago! the male pelvic physio apparently has worked with a Dr Ruth Jones.I was told that they may typically see 1 patient with pgad a week from all over the UK.I pray to God they can help me. It's like I'm living in an alternative reality where I can not comprehend that this could possibly happen to the human body.I also confided in a Freind who trained as a doctor and once briefly trained with a local leading colorectal surgeon now retired and he was very concerned at what was going on with me but remained baffled. My surgeon has refused to operate on my hernia.i have occasional testical pain that feels like I am being strangled had torsion of testis as child so been told would have to see a urologist I also have enlarged vein going all the way across testcals which presents different to a varicocelle had it for a few years and the vein can at times get very engorged and painful. I believe in hindsight that the cause of the pgad is
1 .chronic straining for 4 years with anal fissure with extreme treppidation b4 emptying the bowels and consequential spasm
2. Taking up cycling 2 years ago which may have pushed things too far though I was able to ride pain free untill that fateful night where I got off bike and felt electrical numbness in my penis although in hindsight for a year leading up to this I had extremely low discomfort after passing using which I ignored if only I could have known
Also had a weird one in a million encounter with someone local to me on Facebook who I was buying something off turns out his wife knew Dr Ruth Jones in random conversation and advised she is well regarded was very surreal moment !maybe I'm being told something .Iv experienced a few almost angelic experiences in my life which I cant explain almost like someone is guiding me maybe this is one of them .I know one thing if I get over this pgad iv decided to devote myself to the most important things in lifemy family as well as helping others as it's definitely put my life into massive perspective!!
Re: Unusual symptoms finally got a diagnosis
Just seen a colorectal physio who has diagnosed me with pelvic dysfunction primary as a result of a chronic anal fissure and not helped by my cycling !