Hello everyone I would be really grateful if you could offer me some advice.
Iv been suffering for around 5 months with what appears to be some sort of pelvic nerve neuralgia/entrapment. However I couldn’t be sure if it’s this or something slightly similar.
It started after I was told it was helpful to stretch your penis as a warm up before masturbating. Iv obviously applied too much pressure. There was never any snaps or noises or ripping sounds. Not even significant pain at the time, maybe a little. The only other thing I can think of is I was stretching my legs doing front swing kicks. Around the same time I was doing some exercises, down on the hunkers, bouncing around. I did feel some pressure on the groin area but nothing too major it felt.
My symptoms are as follows:
• Penis pain, almost itchy inside urethra. Horrible tingly, itchy feeling as if ready to ejaculate or shudder. It burns a bit during urination. Feels as if something is maybe stuck or trapped in there. Trapped feeling particularly at the base.
• Perinium feels the same, and hurts when I sit on it. (if i do tingles travel up my body).
• Ache in the base of the penis and pubic bone. Occasionally a prickly feeling up into the bladder.
• Testicles ache on and off.
• The penis in its relaxed state, is smaller, tighter and firm to the touch. Especially when I stand up as if something is being trapped or pulled. It is hard flaccid and very firm to the touch when flaccid.
• The penis skin is numb. (Can feel heat and cold, but not touch unless I nip it).
• The colour is not quite right, as if bloodflow has been reduced. The veins look less nourished.
• After ejaculation the penis goes into a kind of fibrosis rubber like, still state with.
• It has a slight bend to it which it never had before.
• It has an hourglass appearance in the semi erect state before fully filing up in the head. The hour glassing area is accompanied by a thin band of tissue beneath the skin.
• My muscle that is used to stop urination mid flow. This is weak, and does not immediately stop it like it used to. I also cannot twitch my penis as easily by doing this.
• The skin of the penis has become quite dry, the penis head is a dry papery texture, and looks as if its about to crack at times, almost flaky but not quite.
• It looks red at the tip, as if it may be infected but it’s not as Iv had it checked and used antibiotics. I assume this is due to lack of fresh bloodflow.
• Erections are harder to achieve and maintain.
• When erect it feels very firmly erect with no slight allowment for movement downwards like it used to.
• It appears to have lost its elasticity somewhat.
• Anus feels itchy, irritated. A fullness at times. Feels horrible to sit on.
• Groin and hip pain, like an ache.
• Lower back pain, specifically coxxycs.
• Tingly up back into spine and head at times. Even into tongue and tear ducts.
• The pain from the lower back and genitals seems to burn down into my feet at times, specially my big toes, and sometimes heels.
• When this first started I was getting this really strange cold sweat that came on with it.
• Horrible nightmares and a really anxious panicked depressed feeling on waking up.
• Tight thighs (largely gone now)
• Tight glutes (largely gone now)
• Weak jelly legs (largely gone now)
• Sciatica on left (largely gone now)
• Anxious and depressed, almost like having panic attacks. I know this would seem obvious as a reaction to what Im dealing with, but it feels as if its something physical, like overstimulation of the nervous system due to discomfort.
Sitting makes my symptoms much worse.
In large my main symptom is this strange irritated itchy feeling which is located at the base of the spine, up the anus, just beneath the bladder, and behind the penis base. It feels as if something is stuck or out of place. This is just how it feels and Im not exactly sure whether that is where all the pain starts, or whether its secondary to something else. It feels as if something is just nicking the nerve or not in the right place. I feel like I’v trapped or damaged a nerve (dorsal, perineum, pudendal???), or maybe iv damaged a ligament or blocked an artery in the pelvis, inhibiting bloodflow. Maybe damaged tissue with scarring (liberal tear). I feel secondary to this comes all of the peyronies type symptoms. Or perhaps im wrong and it’s the other way around.
Iv had normal blood tests done for STI’s, nothing, took antibiotics, nothing. On examination, all urologists have said my actual penis appears fine in appearance. No bruises or noticeable plaques. Of course I can see the difference in size and colour, but the dr wouldn’t have my previous state to compare it with. I feel the penis symptoms are secondary to something going on a little deeper inside. The drs just keep telling me its CPPS and non bacterial prostatitis. I have had a couple of lowish testosterone results, nothing major, still in the normal range but never the less, low end. That is free testosterone, FSH and LH. Prolactin also lower end of the range. I have visited numerous GP’s and even a neurologist, all have concluded that I don’t have MS or Parkinsons etc.
**The following paragraph may be irrelevant but its worth a mention**
I also have CFS and was treat for lymes disease, but my symptoms for this disease have been nothing like these new pelvic and penis nerve symptoms which appear to be injury related. I just thought Id mention about the CFS as I think its important to give a full history and contribution as I see some people with lymes have had similar symptoms. Another thing is a lot of my ME/CFS symptoms have went into remission since being afflicted with this. Things like fatigue and head splitting migraines. I know that’s maybe not relevant but for the sake of medical research I think its important to be clear.It may be just due to the additional adrenaline in my system at the minute. By the way If you do have this (CFS/LYME/EBV etc) you can definitely get largely better with time so just relax in the meantime.
Back to issue.
This is seriously affecting my life. I would be very grateful if someone could offer me advice on the following. I have tried to research a lot of it on my own but its quite a diverse topic with conflicting views.
1. What tests and scans are the most comprehensive for me to find out EXACTLY what is going on with the nerves, arteries and ligaments in that area? (iv heard a number mentioned…potter MRI, 3TR MRI)
2. I live in England, can we send results for interpretation by more experienced doctors who know what to look for? I.e. get a scan done here but send it to America, France or where ever?
3. Has anybody had a decent resolution of these symptoms especially the sitting pain and penile related symptoms?
4. What doctor or clinic in England is the best for this good thorough diagnosis. Iv had CFS for years and know too well about the existence of quacks who bank up money doing test after test for no apparent reason. I would like advice from someone with genuine interest and knowledge in this field?
5. Lastly is there really any chance of resolving this? Has anybody genuinely gotten fully better or very close to. So can sit down with no pain, penis etc working fine again.
6. Has anybody been in this situation tried something and learned from it, that perhaps it didn’t work, to save me time, so I can look at other avenues. If so please shout up?
I would love the chance to speak with someone about this who has an idea of what im going through.
Sorry for the lengthy post and thank you for any advice, I am very grateful.
Written by
healinfeelin
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Is there a specific Dr you think I should send my results to for a diagnosis? Im having an MRI of the lumbar/sacral region next Friday through the NHS. Would I need to tell them I wanted it on a disk? Do I need to tell them to focus on the pudendal nerve?
I live in County Durham near Newcastle Upon Tyne. Who is the Dr you refer to in Middlesborough. do you know his/her name? I wounder if there familiar with this pudendal stuff.
I have had my mri of lumber/sacral area, but yet to get results. could you point me toward the Dr from middlesborough as this is close to where I live.
I have been suffering with a similar problem for a while which has improved over time but has not completely gone. I found the hard flaccid Peyronies symptoms caused me the most anxiety and panic even more than the pain in my perineum which meant I couldn't sit down at work or on the train.
I've seen 4 urologists, a pain specialist and a psychiatrist.
I think CPPS and non bacterial prostatitis are umbrella terms which are used by doctors for various different illnesses that happen to be in the same region of the body.
I have come to a similar conclusion to you that my problem is some sort of nerve neuralgia.
Tests I have had done include
Ultrasound of prostate,
MRI scan of pelvic region
Cystoscopy
Blood test for bacteria
None of the above have found anything.
I've tried
Hot baths
Clearing prostate regularly
Pelvic floor exercises
Hypnotherapy
Amytriptalene
Antibiotics
None have solved the problem although I found after taking 30mg amytriptalene for three weeks it reduced pain especially in my perineum but had to keep taking them for a long while.
The most recent visit I've had is to a pain specialist who believed the pain was to do with muscles and has referred me to a psychologist who specialises in pain (i havent seen him yet)I mentioned that I thought it was a problem with my pudendal nerve. He said how can it be your pudendal nerve. At that point I curled into my shell and didn't say anything rather than saying that it was the only thing I have found on the Internet that covers my symptoms and far better match than CPPS and prostatitis.
I hope that you have now found a doctor that can help. I would appreciate it if you let me know how you got on.
Hi Keepcalm (none of te following is medical advice, im uneducated in this area of life)
Thanks for getting in touch regarding this condition. I know exactly what you mean about the panic that hideous symptom causes, it crushes me mentally and often cant work out whats worse the physical pain and comfort or my reaction to it, which is just complete dissapointment and worry about the future. The self-esteem issues, especially around sex, it has created for me are incredible. This is the case even though I can still have sex, which I know sounds weird, but its different and uncomfortable and appears to be ut of y control.
Again, completely agree, I feel this CPPS and prostatitis carryon we get diagnosed with translates as "hi you have lots of horrible symptoms in that private area, I dont understand them and am not willing to look into them, as its expensive and I can easily give you the prostatitis diagnosis which results in minimal work from myself".
Anyway Ill get to the good stuff.
So far Iv seen numerous professionals.
Iv had hormonal bloods tests by an endocrinologist following my initial low testosterone test, which are now unremarkable and in optimum range. He explained false negative/positive readings are common for this as they are very time sensitive. On having my testosteron in the AM (8.30am), it was high end of the range (24..10-30), as it should be for a 27 year old male. The first one was taken at around dinner time and was very low, like 7 or something. Cortisol, thyroid, LH/FSH, vit D etc all fine. So that for me appears to have eliminated the hormonal side.
I have had an MRI of my lumber/sacral region which was also unremarkable, apart from a slight bulge at L5-S1.
I had a ultrasound of kidneys, testes, bladder, again nothing.
Had an ultra sound of penis, absolutely fine apparently, no fibrosis or hemotomata what so ever.
Iv had slight improvement in perineum pain over the past couple of month. I honestly dont know whats helped it, time, a steroid shot, lidocaine patches and ointment, I dont know. However it coincided very closely with using 10mg of amitriptyline, which I had to come off as it had my unstable. The amitriptyline definately did something positive to the pain. it pretty much stopped premature ejac aswell which hasnt returned. It obviously calmed nerves, and relaxed muscles etc. The pain is still here but a bit better. The hard firm flaccid thing is still apparent. Alpha blockers (alfuzosin xl 10mg at night) and low dose 5mg cialis daily help this symptom more than anything else. If you have not tried this please do so. It helps mentally to see it looking more normal. The alfuzosin also helped a little with pain...a little. So does drinking water.
Is it the same for you that lying down helps the peyronies symptoms?
May I ask how long you have had this, and to what extent you have recovered?
Could I also ask what brought this on for you? If this is too personal for public please inbox me
I seen a very good pain management guy lately, he basically said its nerve irritation/damage. Its the sympathetic nerves that are causing the issues. He said nerve damage gets better and to just leave it.
Sorry I just said my pain guy said to leave it, that's not entirely true. He gave me lidocaine patches, lidocaine ointment which help a little but its early days. He also wants me to use Cymbalta but iv read some bad things on it regarding withdrawl problems and also sexual and concentration issues, so am a little apprehensive. However iv heard some really positive things about it regarding pain and mood, so may give it a go in the new year. The Pain consultant was really the only person iv spoken to who appeared to know what he was talking about, I was shocked by this. GPs just don't want to know and appear to think this is largely psychosymatic regardless of the physical presentation. After a series of tests and questions, the pain guy however agreed the anxiety and depression were secondary and therefore reactive in relation to my main issue of pain. I am fully aware the psychological status has an effect on pain threshold etc, but sometimes would it be so crazy to just LISTEN to your patient.
You said something about a psychologist saying "why would it be pudendal nerve" and you felt a bit hopeless. I would challenge that a bit and say "well because I'm having what appear to be neurological symptoms in my perineum and penis which are served by this nerve and the dorsal nerve". These are just normal people, if you have a valid rational opinion, which obviously you do, don't ne afraid to express it. Sorry for the rant, gps have annoyed me a little lately.
Anyway take care, I hope this update helps at least someone.
No I seen a different one in County Durham with a genralised interest in all pain conditions but he was really good. Very open minded which seems to be a trait some docs just don't have. I may still approach the Middlesborough doc with him having an interest in the pelvic region. Thank you for the contact, I only seen it yesterday. Iv been a little busy.
Happy new year and hope this year will be a better one for you.
Thank you for your detailed reply and sorry for my slow reply. I could try and make excuses about being busy over Xmas but that's no excuse. I have been trying to not think about my problem to be honest. I am 100% with you about GPs and feel I have been completely let down by them. they have been dismissive and gone straight for the psychosomatic diagnosis.
I've had this problem for 7 years and also have self esteem issues around sex. This problem resulted in me breaking up with someone I was hoping to marry 6 years ago and I haven't had a girlfriend since.
Regarding your question whether laying down helps the Peyronies symptoms maybe a little but the thing that makes the biggest difference for me is sitting on the toilet seat. I also have tried taking 5mg of cialis daily but tend to only use it occasionally on bad days rather than everyday. I've requested alpha blockers in the past but has fallen on deaf ears. You mentioned that you have had ultrasound of the penis which has shown everything is fine.Have you noticed any thickening of the tissue at all? As I have some thickening of tissue along top and bottom of shaft which didn't show up on ultrasound scan which I had.
As I have said above I have had the problem for 7 years and in terms of the pain things have improved significantly and the hard flaccid things has also improved. I have been taking 30mg of amytriptalene daily on and off for the last 3 years. I have always struggled to get up in the morning but taking these makes me feel like a complete zombie when I wake up and am frequently slightly late for work trying to get every minute of sleep I can so am keen to come of them. Every time I stop the symptoms worsen.
It sounds to me that you are seeing the right people and getting good advice.
I have an idea what caused this problem but would prefer to tell you privately to your inbox.
Yeah i notice improvement sitting on the toilet seat. Amitriptyline really helped my pain but I could couldnt think straight or anything, really groggy and nmotivated, just felt so unnatural. My pain managemnt guy said that it may not necessarily be a damaged nerve as such, although it could be, but perhaps something chemical in nature. He did say the sympathetic nerves were the problem.
I highly recommend listening to all of the PN/PNE shows we have in the archives- also the one about sex with Dr. heather Howard- there are also 2 shows all about mens pelvic pain
Hi guys same problems here have you found anything that is working and how are you coping as i noticed you haven't posted in a while. Mine started after doing squats with heavy weights and a Urnary track infection.
Hey guys, this is in response to healinfeelin and keepcalm. I too have been experiencing almost exactly the same symptoms. I have also undergone the same tests with normal results. My issue started 10 months ago in and oral sex encounter with a woman, subsequent e coli infection, and now chronic pelvic pain almost identical to what has been posted. In 10 months of independent research and seeing every doc under the sun, these are my findings that correlate with your experiences. The pain improves upon laying down. In fact, I sleep with no pain. I generate pain after I awake, through the day until I go to bed. Everyday. Amytripline is the only prescrpition that has offered some relief but some pain remains. I conclude that the sypmtoms are nerve damage related whereby pins a needles occur periodically in my feet, thighs, legs, arms and at times head. Back pain is periodic and hot and cold sensations are very common in the pelvic area. One thing that I just stumbled on by accident is cialis. I found that cialis took away the pain in the tip and shaft of the penis, which up until now had only been somewhat quenched by amytripline. Cialis makes it disappear until it wears off. I believe that its is not prostatitis but rather pudendal nerve compression or damage. Rest and lying down must help at least in my case. Standing, walking and sitting must aggravate the nerve. I have yet to get this diagnosis from a doctor. I have been waiting 6 months to see a pudendal nerve specialist with no set date yet. Tomorrow I see my uroligist who thinks its prostatitis. I will see what his reaction is when I tell him that cialis provides temporary relief. There must be an association between nerves and the increase or decrease flow of blood. Cialis increases the flow of blood to the penis and in my case offers relief. It does nothing for the pain in the testicles. If either of you have come across anything else that you can add, it would be greatly appreciated. I do have a question. Keepcalm mentioned that you had this condition for 7 years and that you have had some improvement. How would you rate that improvement on a scale of 1-10? And how long after the pain started. I would appreciate some insight. Thanks guys.
I have exactly the same symptoms for 10months after oral sex with an sex worker!
My 5th uro says it's Prostatodynia, my prostate felt weak and i can only come off with no stress, normal sex life and pelvic floor physiotherapist.....
The symptoms are not as hard as 8 months ago but just really annoying and depressing!
Wth can it be?? :s
Exact all symptoms like first poster but no testicle ache
Sometimes pain in feet, like i have walked in the city for 12 hours.(pins needles pain)
Some days i feel totally normal for hours.. but it always comes back
Another sufferer here - carbon copy of OP symptoms except no hard flaccid (thankfully). I got mine after a spot of 'DIY' and had same partner for 20 years so convinced - in my case at least - it is not caused by infection.
Perineum, penis, testicle pain, itchy anus went away after 4 months but I am left with excruciating tight muscles in lower back, hip and abdomen. Also the aforementioned feeling of having walked miles, in my feet. Anxiety and depression is through the roof, exasserbated by the apparent impotency and dismissive nature of healthcare professionals to my problem. I have imagined every doomsday scenario going.
I have tried Amitriptyline and Gabapentin. Amitrip worked wonders for the pain, but experienced some unpleasant side effects after a month. Gabapentin seemed to send my entire nervous system into overdrive and caused very low mood. Currently on naproxen which is pretty useless.
One of the side effects I got from amitrip was numbness or pins and needles in several nerves, which seemed to coincide with everywhere I have had a problem in last 10 years, eg right facial nerve from bout of bells palsy in 2011. However one notable exception was the right sciatic nerve - could this offer a possible clue? (Maybe grasping at straws!)
I am in county Durham as well so would be very interested to speak to the neurologist in Middlesbrough - please could I have his details?
((Hi There, may be this is the solution))((kegels)),I have the same thing from a year ago, I have seen the a lot of doctors and same as you I've tried every thing else and no thing works. it works for somes as they said,
I think all us of may be ready to do any thing for make him self back again,
, it worked for some guys have the same issue with no time .
, will search deep in that and try it starting from to day and feedback you by the results
if you still a live keep going there is a lot of hope . if some thin new happened please with
hi guys , I've just spent the last couple of months going through so much of what u have described above and as you can imagine I'm desperate for any help you can give me - really dont know who to turn to as doctor Is uninterested but as u know this is making my life so miserable, any advice would be gratefully appreciated
Mr healinfeelin - the way u described everything is just so ridiculously uncanny as I couldn't express everything in words like u have tho it's exactly how I feel
I'm online again searching for relief and found this blog. My symptoms started in 1989...yes 1989. (I'm now 59) For many years I lived with it after finding out it was non bacterial. I've tried all the Triptelenes, Gabapentin, and Elmiron most recently. Most caused bad sides affect and I thought Elmiron was helping the last four months until the weather got warmer . I started a diary last year and again, when the weather got warmer, (and sex started) I started the horrible pain again. I have been single most of the last 15 years...a lot having to do with the after sex pain, and now, dribbling and premature ejaculation. I hate that I don't want to even have a relationship because of this thing. The swing is usually 6 months bad and then a calming period of a few months. I feel worse after ejaculation...like a hour later and it continues for months if it do it twice in one week. The burning is bad in the groin, testicles, and at times goes from the tip to the anus. One hour it feels better, then I sit and that is the worst. Walking isn't great and laying down is not good either. I went to several Drs and had to tell them about CPPS. I think it is a nerve issue having to deal with blood flow as well...because sex sets it off. As I type I'm sitting in my chair on a ring and a frozen bottle of water under my groin and testicle area. then at night I taken a heat pad to the area. My Dr. referred me to the Pain Clinic here in Seattle but I don't want to be told I need to see a shrink ...I really feel the muscles/nerve area gets inflamed ....so why can the Dr figure this out? I started Quercetin this week taking 1500mg a day for a month to see what happens. I can say that over the years I have gotten very depressed and don't know how I can handle this along with other pains in my old age. Just wondering if over doing sex and or masturbation over the years did damage or wore something out??
can relate to so many of your symptoms and really hope u can let me know if u have had any progress as I don't know who to turn too next regarding these issues
Quercetin this week taking 1500mg a day for almost two weeks... I don't feel any worse and I sit on an ice pack as often as I can. If this doesn't work I looking at Prosta-Q or most likely Q -Urol.
...has anyone had any experience using a trigger point wand than some physical therapist recommend? I have read of some great relief from pain. The thought of using the wand does not excite me though...sort of speak.
Back again...I read in a UK site that some have found relief with Diazepam 5mg. I've had this since 1989, and have not found anything to treat the pain at all...next year I plan on going to the pain center and tell them to do whatever they want to me. Those who do not know what CPPS is...please read about it...it is not an infection or caused by bacteria....my crotch and all related areas have burned on and off for 25 years...worse after sex, and don't even think of sitting . I honestly sit on a frozen water bottle all day long, and even to bed at night. No, I am not married anymore.
Im dealing with the hard flaccid problem. I believe it is CPPS . right now im focused on a gluten free, added sugar free diet. Pelvic floor release yoga. Hf unraveled book. Im hoping it goes away. Please let me know if you'd like for me to continue to post here.
You put everything I feel into words, so much so that I can basically show this thread to a doctor and say "I have this !".. Well I've bookmarked this page hopefully one of us gets some help.
If Something works PLEASE COME BACK and share you experience
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