Introduction & Dealing with Peyronies at 17

[ThisTooShallPass]

Hi all,

I have recently been experiencing some symptoms of Peyronies and I am looking for some advice/thoughts on the matter.

I am currently 16, nearly 17, and I first learned about Peyronies when I was 15. I had masturbated when I was younger in a somewhat awkward position that meant I never really saw my erect penis much. When I changed this position, I noticed a left-pointing curvature on my penis (around 15-20 degrees). I also had a twist anti-clockwise in my penis, again maybe around 20-25 degrees. Whether this was congenital or due to the position I used, I am not sure. Researching this led to me discovering Peyronies, and I asked my GP about it. He said to me that amount of curvature/twist is normal and not to worry about it. From then on, when masturbating, I held my penis in a way that straightened out the curve/rotation.

Roughly one year later, around last week, I began experiencing pains when having an erection - this was very different to a pain I might experience from overuse and I felt like something was wrong. After a bit more investigation, I have identified a very small bump near the base of my penis, on the right hand side (not on the top of the penis but on the side of it). The degree of curvature/rotation hasn't developed further (yet). Furthermore, while my memory is hazy most mornings, I don't seem to remember waking up with an erection as I usually do in recent days. Perhaps somewhat promisingly, I had a delayed spontaneous erection this morning on my way to school that was absent of pain.

I have two thoughts about this:

1. I could have had Peyronies since last year and I am experiencing these additional symptoms now. I feel this is somewhat unlikely as pain (from what I can tell) is much more prevalent in the acute phase. Would it be possible to experience pain as a new symptom that far on in the progression of the disease?
2. I am just developing Peyronies now. This is quite worrying for me as I feel my curvature is already on the more dramatic side (for congenital curvature) and I fear how much the deformity will increase.

Overall, this experience has been pretty devastating for me so far. I feel quite angry, upset, and afraid of what my future holds. It has been very hard for me to keep any form of positive outlook for my future (sexually and emotionally).

A brief summary of my main concerns with Peyronie's are:

1. Relationships - Obviously everyone struggles with this disease, and I don't mean to diminish anyone else's struggles in any way, but I feel as though this couldn't have happened at a worse time. I hope to be going to university soon, and as I am at a stage of life where a lot of sexual relationships are developing, I feel as though I will miss out on a lot of my adolescence and will feel isolated as my friends develop relationships while I remain isolated due to the disease. I'm not very sexually experienced, and don't want to have an impaired sex life before it even properly starts.

2. Risk in Treatments combined with time constraints - This fear sort of ties in with my next point. I feel with a lot of the safer treatments, time isn't exactly of the essence. When you are older, you can take time experimenting with treatments, whereas in my situation where I am attempting to preserve my youth, I feel as though a quicker solution is necessary. While I have some patience, I would want to have a fairly functional penis by 19. This leads to some problems for me in that many of the more aggressive treatments have severe side effects. For example, the loss of size in Nesbit, some horrible side effects with injections etc. I have not been diagnosed with anxiety, but I am an extremely anxious person. Even the prospect of potential damage through VED misuse terrifies me - I don't think I could cope with many of the treatments. Especially some of the more painful ones. It seems to me like a very much lose/lose situation in that I can't get better without damaging myself or missing out on my youth. I am very paranoid/anxious about undergoing treatment that could worsen Peyronies, even in rare circumstances, e.g. injections, VED, surgery etc.

3. Loss of size - I wouldn't say I have a particularly impressive penis. My length is a bit above average (around 6.2-6.5) while my girth is perhaps slightly below average (4.6). I have seen some people experience a loss of nearly 2 inches in length using operations such as the Nesbit procedure (which seems to be the favoured option of the NHS) and this would really devastate my confidence. I also don't have much girth to spare, so I am concerned as to how this disease might progress. I feel already as though my size is decreasing (although this could be a result of less full erections due to the pain/mental barrier). I would ideally like to find a solution soon, but again, I am prohibited by my previous options as quicker methods seem to carry this risk of size loss.

Despite having a very bleak outlook on this and generally feeling really low, I do want to try and combat this disease. I have a GP appointment for tomorrow and I hope he will refer me to a urologist. I will be using the NHS and would really struggle to afford private care/consultation (uni will already be a heavy burden). From what I have read, the NHS can be particularly tricky regarding Peyronies. I read that they have a very 'wait and see' approach and will often subscribe vitamin E for 12-18 months and then suggest Nesbit surgery if no improvement. For me this would be a very poor outcome for aforementioned reasons. If my uro is no good, I will push to be seen by a specialist. Treatments that I am currently interested in are pentox, coq10/Ubiquinol, & L'Arginine. I have heard cialis mentioned in these forums but I am unsure if it would benefit me. I have also heard keeping a better diet can help, and something about less bread (). With some reluctance, I would look into VED and traction devices - although I am still concerned if this could damage me due to my age/improper use. Surgery and injections are a last resort.

Furthermore, I would like some advice on what to do just now, especially regarding erections and masturbation etc. When dealing with younger patients, I see many people suggest giving your penis a rest, but I also see people strain the importance of maintaining erections. I would quite like to monitor my progress and feel this would be difficult without being able to give myself an erection. Should i give myself one semi-regularly to measure progress/keep it healthy but not masturbate or do sex acts? Or should I just abstain as much as possible all together?

Apologies in advance for the very long post, but any thoughts/advice would be greatly appreciated. Thank you for all the help.

[NeoV]

Welcome and great post.

I was 18 or so when I first noticed changes in my penis, and a lot of us got it younger. Keep in mind that a lot of guys have bent dicks and scar tissue on the penis is common, whether or not you call it Peyronie's or whether or not it involves a genetic factor.

Masturbation and sex is fine as long as your erections are natural and caused by genuine arousal. Watching porn too much and masturbating a less than hard erection while sitting is one of the worst things you can do. Make sure you are hard and do so gently without clenching your pelvic muscles! Relax your pelvic floor. As weird as it sounds I am nearly 100% sure my Peyronie's was made worse by doing this since a very young age.

You can be sexually "successful" in high school but it will be largely dependent on the maturity levels of the girls around you. You can have a very bent penis and sleep with the most attractive ones and keep them coming back. It depends on your attitude and ability to let go and talk to them.

Some girls actually like it, as in it makes you more human or relatable to them. I say "I have this genetic thing, it really sucks but I'm working on it and I still love sex and am turned on by you". I say this half smiling with no tone of seriousness. As I've said before, the principles (I will not say rules) of success with women apply to men Peyronie's or not, and the best thing is that you have a reason to learn them while others don't and won't.

God do I wish I could enjoy high school again knowing what I do now!! At the same time, as I said most girls are simply not open and being surrounded by so many of the same people makes it hard without winning over the crowds. After high school will be great my friend. Take this apportunity to fail with girls so you stop fearing it. I started succeeding with girls massively after going out with guys and failing on purpose by approaching as many girls as possible. My heart used to pound so hard approaching girls at random and now it's just funny and dumb. Women just want to see that you are okay with your penis, they do not care. All insecurities are the same. Girls will test you to find out how you feel about yourself.

Girls may tell you they care about muscles, penis size, etc, but they usually don't. My wife is 8 years younger than me, and she used to make fun of me balding every day non stop. She even made me wear a hat. Every time it came up I would laugh with her and make jokes like "you have no idea how many benefits there are to being bald, in time you will know them all." Or just pretended to be sad and pouty and blow it out of proportion. Now she loves that I'm bald and she says she prefers bald guys now. Isn't that interesting. It doesn't matter man!

As far as treatment goes, I recommend traction over everything else and the basic supplements for penile health and nitric oxide. Citrulline is great, so is pine bark extract, ginseng, and many others.

I never bought a traction device. I just used my hands and over the course of two years I'm pretty much straight now. The studies on traction are very good, and also showed that men gained length and girth after using it somehow. Be careful as hell of course.

You may want to try Pentox and low dose cialis as well, but it's perfectly fine to avoid drugs if you want to.

[eshow07]

Hi everyone.  I also am a young guy (20) like NeoV who was just diagnosed with Peyronies.  I have had some penile pain, some 2 noticeable lumps which are soft which I think is causing the hourglass shape only when I'm semi erect.  I've also had problems with ED.  Although I can still get hard it's alot harder to achieve a full erection and it will go down if I stop physical stimulation.

I think the cause of my Peyronies was jelqing.  I jelqed on and off for about 2 years and never really noticed any pain.  I did gain some girth and length (about an inch) but that could have been due to puberty.  One day the pain become very noticable so I stopped jelqing.  

I just had a few questions for everyone.  If my erection isnt distorted at all (only semi erect) does that mean that the plaque and lumps in my penis have not calcified?  Also, over the last month ive noticed my penis has become a little smaller.  Have any young guys experienced a loss in penis size from Peyronies?  Im only 5 inches erect to begin with so the idea that I could lose length and girth scares the crap out of me.  Also, does the ED eventually go away with Peyronies or does it become worse?  Because I cant tell if I'm in the chronic or acute phase because the lumps seem somewhat firm but i still experience pain and hourglassing effect.  

I'm really worried that I wont ever have a normal life and a normally functioning penis again.  If anyone could help me out it would be a huge help.  Thanks Everyone

[kuaka]

In my opinion it is important at any phase of this disease to expand the Tunica "fabric" as much as can be done without introducing additional "injury", both to prevent the plaque from forming with the Tunica "bunched up" and to stretch out what has formed as you soften it.  Total "rest" is one of the factors I attribute my own PDS.  VED would be a good way to exercise the "expansion" of the Tunica.

[ThisTooShallPass]

Hi everyone,

I have had an appointment with my GP, and unfortunately I haven't had much success. He was fairly concerned with my symptoms, and has referred me to a urologist, however, he has told me that the consultation could take months to come through. At this early stage in the disease, I feel this is precious time that I can't afford to lose. I am going to try and afford private care, at least for the consultation, as this will allow me to ask him to subscribe me some medicine that I can use to treat myself - something my GP was reluctant to do due to his inexperience with the condition. Unfortunately, the urogolist I plan on seeing seems to lean more towards the surgery route and says there is little evidence behind many medicines on his website. I have heard some people say there are studies you can bring to your uro to help convince them - could anyone link these to me?

You may want to try Pentox and low dose cialis as well, but it's perfectly fine to avoid drugs if you want to.

Hi Neo - thank you for your advice - it was very encouraging and has helped me have a more positive outlook regarding my situation - I will be sure to keep it in mind. I am glad you are taking the condition in your stride. I think I will try some of the drugs, especially Pentox, as I already have a fair amount of congenital curvature and I am scared of further increases, and I am also struggling with the pain a little. I will look into some of the other supplements you recommended as well. Best wishes for the future.

...without introducing additional "injury"...Total "rest" is one of the factors I attribute my own PDS...VED would be a good way to exercise the "expansion" of the Tunica.

Hi kuaka - many thanks for your advice. From what I can understand PDS = peyronies symptoms? It is good to exercise the penis, although nothing too vigorous so as not to exacerbate any injury? My GP was reluctant to recommend a VED as he said many of the benefits are temporary. I am not entirely convinced by this, so will probably look into it for the near future. In the mean time, would I be able to emulate the benefits of a VED through giving myself repeated natural erections with little external stimulation? Thanks again and I wish you luck with your symptoms.  

If anyone could help me out it would be a huge help.  Thanks Everyone

Hi eshow - unfortunately I don't have much advice for you as I am new to the disease myself - if you haven't already though, I recommend you look at some of the forums dealing with treating this and devise a plan for yourself. Best of luck - I am sure you will be able to fight through this.

------

At the moment, I think my general plan of action will be to get medication as soon as possible, with the possibility of VED/traction device in the future. The pain is quite bothersome at the moment - it occurs both flaccid and erect every now and again - although it is by no means unbearable. I am also concerned by plaque growth. I believe the best way to combat this would be oral medication. I am going to try and seek out pentox, CoQ10/Ubiquinol, acetyl-L-carnitine, and low dose cialis, hopefully with the blessing of my uro - to help alleviate my condition. Is this a a good combination - is there anything I am potentially missing, or is there anything dangerous/or any bad side effects with this combination? I know some of these can thin your blood and may cause problems if your blood is too thin. If I fail to convince my urologist - I plan on ordering from River Pharmacy which seems to have a good reputation around here. If anyone has any experience with them, especially in the UK, I would appreciate your experience. Any other comments/advice are also welcome. A massive thanks for everyone's comments so far.

[kuaka]

https://www.peyroniesforum.net/index.php/topic,6303.0.html

I made my own.  Vacuum source is an automobile brake bleeder pump, although "sucking" on the tube works.  I find the smaller of the two I made works best for now.  The home made traction device was an early attempt at a fix, and I did get some benefit from it early, but it is not comfortable enough for significant use.

[ThisTooShallPass]

I made my own.  

Hi kuaka - thanks for the reply and the link. I'm probably not resourceful enough to pull something like that off, but it's a very impressive creation  . I'm a little apprehensive about using VEDs until further consulting with my uro and what not, but I think I will just try and get regular erections whenever possible in the mean time - hopefully it might have some benefits. I do know a decent amount of people have success with VED on the forum however.

Interestingly enough, it would seem my most significant plaque is on the opposite side of my curve (plaque on right, curve to the left). While I believe this will unfortunately just result in shortening, I hope I will also experience little (or at least a reduced amount) of further curvature.

I'm still a little unsure of my treatment plan and obviously scared for the future - but I'm trying to stay positive. Thanks again for all the help!

[Jonbinspain]

Thistooshallpass;

If surgery is the route you decide upon, try to avoid plication or Nesbitt technique. It's surgery from the dark ages. It doesn't get rid of the problem, I.e. The plaque. It shortens your penis - sometimes quite dramatically, and recurrences of the disease have been recorded.

If at all possible, opt for excision and graft surgery. This removes the plaque ( which, I have to say, is normally on the side of the curvature) and there is no loss of length.

Regarding your symptoms. The plaque is, or should be on the side of the curvature as it's the plaque that prevents the tunica from expending properly on that side. If you have curvature on the other side, are you sure you didn't already have a congenital curvature?  

Lastly, whichever surgical route you may decide on - and it is the last resort -  be very cautious about who you let near your dick with a scalpel!  Ask how many of these surgeries he has successfully completed, check him out to see if their are any bad references etc.  

[kuaka]

ThisToo...

Surgery is an absolute LAST resort.  If I were in your position, I would immediately begin Magnesium Citrate or Magnesium Chloride supplementation, and a careful VED use.  The proper technique for VED involves up/down/rest cycles...15-20 times in as many minutes, once or twice in a day.  Do NOT over pump, as that can cause additional injury.  The objective is to soften the plaque and reshape the Tunica as the plaque softens.

kuaka

[ThisTooShallPass]

If surgery is the route you decide upon, try to avoid plication or Nesbitt technique. If at all possible, opt for excision and graft surgery.
If you have curvature on the other side, are you sure you didn't already have a congenital curvature?  

Hi jonbinspain - thanks for your reply. I have known for a while that the Nesbitt procedure definitely wouldn't be for me (idealistically, I won't need surgery at all) - so it's definitely something I will avoid even thinking about. From what I have read as well, excision and graft surgery does seem to be the optimal route, if surgery is needed. In terms of doctors, it seems to me that Dr. Kuehhas is one of the best people to see regarding this, and the London Andrology Institue in general - I believe you have recently had this surgery? I also believe now, as I had maybe thought in my original post, that I do have a reasonable degree of congenital curvature (thus the plaque on the opposite side). I do feel some pain while flaccid however on the left side, so I could have a less significant plaque there. I think the fact that the most significant plaque is on the opposite side will mean my biggest struggles will be size loss, pain, and reduced erection quality, although curvature might still play a part. I am unsure if excision and graft would help with all of these, but I can tell it would help more than Nesbitt. The pain from the significant plaque on the right side can be fairly strong during erection.

Surgery is an absolute LAST resort.

Hi kuaka - thanks again for the help. I absolutely agree, and hope, that I will not need to resort to surgery. I do have a family history with Crohn's - and suffer from bowel problems myself - which I know magnesium can aggravate. However, I think I will get magnesium supplements tomorrow and see how I handle them. I'm leaning towards chloride, though I don't know if there's any real difference between that and citrate. I will most likely consider VED use after my first uro appointment. I am fairly concerned about causing more damage through overpumping since I am in the acute phase, but will try it if I have problems after initial oral treatments.

Tomorrow, I plan on purchasing CoQ10, magnesium chloride, and l-arginine or ACL ( whichever I can find). I will also be visiting my regular GP for a second appointment before meeting with a urologist soon, in hopes that they might subscribe me pentox. Hopefully a combination of those treatments, perhaps adding low dose cialis in place of l-arginine or ACL if they don't work in the future, will help stabilise my condition. Thank you once again for advice and such so far.

[Jonbinspain]

Yes, I recently had surgery at the London Andrology Centre with Dr Kuehhas. It's early days but I have to say that so far I'm very pleased. He's not cheap! But, he's damn good!  And his after surgery advice and support is something I've never encountered with a physician of any genre. I'm still in daily contact with him through Whatsapp.

He's is primarily a surgeon, but also is a very good andrlogist. An initial appointment with him, if you can afford it, would be a good idea to establish where you are with the disease, it's progression, a prognosis, etc.  

[ThisTooShallPass]

It's early days but I have to say that so far I'm very pleased.

I'm glad you're surgery has been going well so far - I wish you a good recovery. I wouldn't be able to afford Kuehhas for just a consultation, however after some thought, I have cancelled my initial private appointment so I can see a different urologist. It means having to wait an extra week, but the doctor I have now booked (Dr C J Shukla) seems to be much more up to date with the condition. I'm not looking for Xiaflex injections just yet, but the fact he is trained in them suggests a better grasp of the disease to me.

I've began taking CoQ10 and magnesium supplements. I couldn't find plain ACL, so in the meantime I am using a sort of hybrid tablet that has both n-acetyl-l-cartinine and alpha lipoic acid. I also had a chat with my local pharmacist, who said he reckons I would have major difficulty getting pentox in the UK - this slightly worries me - although I have heard of members getting it on prescripion. One of the accounts on the forum said he had success getting my new uro to prescribe pentox. He thinks I'd be much more likely to get potaba and cialis, although it seems opinion on potaba in the forum is divided. I have heard it can be effective in the acute stage though - so I wonder if it's worth giving it a go - at least before I can get pentox.

[LWillisjr]

This topic is now locked as an introductory topic.