Hi, firstly it was great to find this forum, so thanks for all your efforts. I've read quite a few of the previous posts and a couple seem to reflect similar things to what I'm experiencing, but unfortunately the posters didn't follow up on how things progressed for them.
My problem started around 5 years ago, when I was convinced that a circumcision for a minor foreskin problem would be in my interests. I had no other medical problems. Sadly for me the circumciser removed so much skin that there was initially not even enough skin left to accommodate nocturnal erections and in the weeks following the surgery, when everything was still swollen, this caused internal damage. The skin did stretch a bit and pull forward from the pubic region after about 6 months but by then the damage was evidently done.
I started getting pins-and-needles in the penis and when I tried to enjoy sexual activity again, the glans actually felt so numb I would sense almost nothing... An intense pressure in the perineum area began (like sitting on a bike seat) as well as unwanted feelings of pressure and stimulation in the pelvis. This has all been going on since then and now the lower back is damaged due to walking so badly with the pelvic pains.
I have felt very panicky and gloomy a lot of the past few years - to be expected I guess. And of course, I've not even gone into the emotional effects of all this...and how depressed I am.
Seen GP, Urologists and Neurologists but no real breakthrough yet. I've had MRI pelvis and lumbar, plus prostate ultrasound. I have a referral to the urogenital pain specialist in London on the NHS, which I will have to wait many months for. In the meantime, I take Pregabalin when I feel I should and need to, Citalopram daily, and Cialis - all of which I think help somewhat.
So, I would be very grateful if there is anyone else with similar symptoms who could give me some advice on what to do. Are there any specific scans or tests I should try and have? Is there an ultrasound or MRI that could really focus in on the area I feel there is a problem?
I would also be grateful if anyone could tell me of any physical therapists who specialise in this kind of thing, whether it be external or internal manipulation they offer, I don't really care.
Every single movement has become a torture, for so long, and I'm not really dealing with it well, because I never get a break from it. Having unwanted stimulation to these regions when you are trying to concentrate on a task or have a conversation with someone is really not fun. I'm sure many people have it worse than me (not that I find that thought particularly comforting) but the duration of these symptoms has left me feeling very hopeless and totally exhausted.
I'm sorry, but I can't really offer any advice.... But didn't want to read and run.
What a horrific experience you have been through... My heart goes out to you.
The initial thought I had was that they should have sent you to a plastic surgeon right in the early days to see if any of the remaining skin could have been freed up a little. I expect you are now dealing with a mixture of nerve and ligament damage.... And all that goes with it.
If you get a hospital appointment through, you could always phone them and ask to be put on stand by for any cancellations... That way you may be seen sooner??
All the best to you xx
so many doctors and none can think of the most obvious explanation which is nerve damage? you need to see a pain consultant from now on. don't worry, nerves can grow back and you should regain some function ...it should take between 6 months to 3 years
by the way, only a 3T MRI can "see" moe details, so CT scans are useless.
because it's external, you can also try lidocains ointment 5%. it works nicely for me
sorry about the typo, I meant lidocaine ointment 5% ..don't try EMLA, you neeed to wash it off
Sorry to hear what you are going through, sounds like torture and credit to U for having the strength of character to handle all this , So many wouldn't be able to handle Ur position so I hope U are giving yourself the credit U deserve - life can be a total bitch at times pal
Sorry to hear about your struggle. I can relate to some of it, since I have been there too. Since I'm a woman my story is slightly different but it may give you a bit of hope and possibly a few contacts to start out with. So here we go: For three years I've been suffering from a combination of nerve pain (pain in clitoris, inner and outer labia on the right side - sorry if spelling is wrong here, not fluent in English on these issues) and PGAD (one of many abbreviations - persistant genital arousal disorder). Both these symptoms are related to the pudendal nerve which reaches the anus/genital area from both sides of the pelvis region (which is why it is possible to have bad pain on one side but not the other). For a year all I could think about was how to stay sane.... I read a lot, contacted people all over the world, added two and two together and finally "diagnosed myself" since no doctor I could find in Sweden (where I live) at the time had ever encountered these problems or was interested. Pretty sure I had a pudendal nerve problem (but unsure of its cause) I went to see a physiotherapist in London - Maria Elliott - who is a pelvic pain specialist. For the first time I met someone who was not at all puzzled by my symtoms. She showed me it could be released and - above all - she gave me my hope back. Since then I have been moving in the right direction. My latest step has been to start working with David McCoid, specialising in something called Restorative Exercise. He works in Bristol but I meet him through Skype. He has been there, suffering from pudendal nerve issues too. Both Maria and David have given me hope, treatment and advise that work. I'm much better.
If you are in England it makes things easier. I have found these two much more knowledgable about this stuff than äny doctor I've come across. That does not mean there are no good doctors around - just that I haven't met them in relation to this issue. I see that you have some other problems too that are "skin related" which may or may not be linked to the pudendal nerve situation (and cause - the pudendal nerve pain/messup is probably a symptom), but I recommend you to contact these two simultaneously (or even before) to looking for help among doctors. I think they can give you hope too - which is so important at the stage you are in! I wish you the best of luck.
There are two great physiotherapists in London that I can highly recommend. Their names are Trish Evans and Maria Elliott. There is also Dr. Ruth Jones (Doctor of Physical Therapy) in South Hampton; she's an amazing physiotherapist. All treat men with various pelvic pain conditions.
Another suggestion: Fiona Nicolson is a Cognitive Hypnotherapist and has helped many patients with chronic pelvic pain. She has an office on Harley Street in London and one in Henley on Thames.
I'm sorry you have to deal with all this pain. Stay strong, don't give up and keep looking for the right doctors, therapists until you have some quality of life back. Best wishes to you.
Wow, didn't expect so many helpful and compassionate responses in such a short space of time. Thanks, means a lot to me. I will start looking into some of the names mentioned, and trying to make contact.
Yeah, it has been a torture, both mentally and physically, but I have become desensitised to it slightly over the years and, even though I still have the constant symptoms, I have somewhat integrated it into a way of life - although this way of life feels very unhealthy in many ways. It also makes it hard to related to other people (i.e. most people) who don't have these symptoms.
I've come to realise that the mind-body connection is most intense when it comes to the genitals.
I will post again over the next few days as I wanted to add some other points. If there is anyone else who can offer any advise I would be most grateful, as I am with what has already been said.
Hi everyone, I just wanted to update this thread. Thanks again for all the responses. I plan to join the Facebook group that has been mentioned in these forums.
I'm sure you'll understand that with this kind of condition it's difficult to find the time and space to do anything you want in life, which is why I've been delayed in posting a follow-up. I seem to spend 90% of the day 'caught up' in this condition.
Anyhow, I've booked in to see a therapist who specialises in male pelvic pain. It wasn't one who was mentioned, but it seems he knows what he's doing nonetheless. I'll see how it goes and update this thread after my first few sessions.
To be honest, I'm struggling to deal with "life" due to this problem. Literally every movement causes the glans to catch and rub against my underwear (no mater what kind I wear) and causes a spasm in the pelvis (due to what seems like an extremely hypersensitive bulbocavernosus reflex), keeps the pelvic symptoms aggravated and continues the cycle of physical irritation and the resulting emotional illness. I wrap up the glans with sports tape everyday to try and reduce the effect but it still occurs, all day until I go to bed. I'm constantly burnt out and very short of patience with myself, and my emotions are so consumed by this problem I have little energy to really experience anything else in life. I've not felt love, laughter or happiness for over 5 years, and sadly that's the truth and not just me exaggerating. Well, it's a genuine torture.
I've been drinking too much alcohol just to deal with things, or more particularly, just to get through the day. I pushed through the suicidal stage a few years ago, but that doesn't mean I've stopped suffering. I think that until this is really sorted out, things will continue like this. And, being constantly aware of this region of my body, it doesn't help that I've not felt any pleasure from my penis or have not had any sexual satisfaction for over 5 years dues to what must be serious nerve damage.
I know I should really give myself a pat on the back for what I do manage to achieve in the day: I get out walking despite the pain, I volunteer for a charity, I try and seek out solutions to my problem, I'm kind and thoughtful towards other people, I work around the house and do hobbies. But still, I can't help but beat myself up about feeling this way and I'm actually like a bully towards myself. I think part of the reason I do this is because these sensations make me feel really dirty, like I am deliberately stimulating my genitals in public or in front of other people by moving around. So, I could lie in bed all day and feel relatively comfortable or I can 'engage with life', experience constant pain and feel disgusted to the point I start thinking I'm a pervert (even though I'm not), and that by continuing 'trying' in life I'm actually just degrading myself and losing my dignity. What would you do (considering you'd be strongly criticised by society for staying in bed all day)? I know this might sound like irrational thinking, but it's how I feel emotionally, and I can't change this. I feel like this is somehow my fault. I think this attitude has also been reinforced by what doctors have said to me in the past few years as, whenever I 've sought help for my problem, most have told me that nothing shows up on scans so these symptoms are produced by my mind. Surely many real physical problems don't show up on scans?
The average person in society seems to complain about the smallest of things, like standing in a queue or being caught in traffic, or if someone is 'rude' to them. Really? And then the professionals I've seen tell me that it's me who needs to get things in perspective; that constant pain, reflexing and irritation to the penis and pelvis and near total sexual dysfunction doesn't warrant a strong emotional reaction? That I should just 'stop thinking about it' and 'get on with things'? I'm often lost for words by the attitudes of those who are supposed to help us.
I shall sign off. Wishing everyone with any kind of similar symptoms, whether male or female, the strength and insight to overcome and enjoy the life they truly deserve.
Hi.......I have PN and PGAD, have been to the NHNN in London where you are going.......I have seen many "experts" on this, Dr Goldmeir in London is the UKs sexual dysfunction specilsiat and is possibly one to see also, I paid to see him it was £200.00 ish a year ago
I also get driven mad by the attitude its in our minds because the scans see nothing......are you going to see a physio? or a Chiro? The NHNN says it takes on average 5 years before people get to them........I was there within seven months......I hope they offer you something to help........do you also have bladder problems? That feels like you have a UTI but tests say you don't? If that's the case you more than likely DO have a bladder wall infection and Professor James Malone - Lee is the specilsiat to see NHNN said he is the only guy to fix the bladder.
Thanks, I'll look into the name you mentioned.
No, I don't really have a bladder problem.
I've also learnt about the 'ganglion of impar', and how this area can be involved in pelvic pain/symptoms, and that nerve blocks can be done to this area: ainsworthinstitute.com/gang...
Hi...I've had this feeling in my body/mind for 3 years now's, I get this tingly numb sensation In the lower parts of my body around the penis and a feeling of numbness it gets worse everyday my body overheats to the point where I'm wet through , I feel like everyday is a hassle I've had so many tests I've been to the urology department for over a year they found nothing, as I'm writing this my body and palms and heads are warm to the point of sweat , I feel like this is holding my life back , I hardly go out anymore par from work the problem is controlling my every day life it's like everyday I go through the same horrible routine , I just feel everyday is a struggle , I want my normal self back !!! When my mind is thinking one thing and trying to not think of it my body is doing the other , constantly fighting against me! I just feel helpless at 21 years old I just cant deal with it doesn't seem to get better but a lot worse! I've found this site through typing my symptoms into Google and thought I may be able to talk with people who can relate to how I feel . Thanks
Do you remember when this started? Did you suffer an injury?
Do you spend a lot of time sitting? Or do you ride a bike? These can put pressure on the nerves on your underside and cause numbness and other sensations in the genitals.
Do you have the same numbness during masturbation or sex?
Have you ever had constipation or felt you had to push too hard when emptying your bowels?
Have you had a scan of your prostate? Have you been offered antibiotics for prostatitis? Or alpha-blockers for non-bacterial prostatitis?
You might like to think about these things.
Sounds also like you're trying to distance yourself mentally from the unpleasant physical sensations which is maybe why you're describing a disharmony between your mind and body.
The feelings of panic are understandable and something I can relate to.
Try some stretching exercises too, especially the hamstrings and pelvic area.
Sorry to hear about your troubles. I too am suffering with exactly the same syptoms as you but when i get the sensation i usually end up wetting myself i have no desire to pee i can not feel the urge to pee or the pee itself coming out. This all started after i slipped and fell in hospital on a wet floor i have had chronic pain since and loss of strength in my left leg meaning i simply collapse if i put weight on it. I have been to se emy GP who has reffered me for MRI but whilst appliying for personal injury i informed of a condition which causes these syptoms i struggle to recall the diagnosis im sorry but it did point the finger to a trapped nerve in and around the lower back area which cause slight paralisis wetting of ones self and pins and needles. If this is any help then i am glad to of been of use if not then again im sorry but should you have any joy in your own search then please let me know.
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