27 years old checking in

[trekky]

Hi,
Where do I begin.. well.. I suppose by telling it exactly as it is, the truth straight up (I shall try and re frame from turning this into a long winded sob story, I shall try to sum up some of my issues as short as possible)

I'm a 27 years old virgin, that has suffered with the lack of confidence for quite some time, the past year or so I have just been able build enough confidence to start dating after my ex ran off with best friend, I was starting to feel better about myself until now. I didn't even know this disease existed! but it seems I'm not alone which is in itself a relief but dreadful to discover that soo many people suffer from this disease

Two questions which are bugging me.. firstly, how does one cope mentally with such disease?- How does one go about dating/sex life when it is so painful to have an erection, how the heck do you go about explaining to a woman that your physically damaged in that department (surely they would run a mile!?), I have never considered myself to be much of a catch to women but after discovering I have this disease I have completely distanced myself from the dating scene.

I don't feel this is something I can talk to with my friends/family, I'm not that open of a person, I prefer to keep my life somewhat private so this is exceptionally difficult. - I would be extremely grateful for any advice/guidance you can share on this matter.

Secondly the disease itself, I started to notice some slight pain in early February, and it has rapidly gotten worse since, I initially thought I was just bruising (as I play paintball and I do very occasionally get shot in that area which can be extremely painful) but it didn't get better within a few weeks, I then thought it was some sort of infection and thought it would improve, however it got worse, so much so that I made an appointment to see my doctor in April, he suspected and confirmed that it was indeed Peyronies Disease but couldn't offer any advice apart from booking me to see a urologist.

He stated that the urologist would be in touch via letter, a month went by without any such communication so i contacted my doctor and he stated that it could take 3-4 months before a Urologist would be able to schedule me in.. knowing what the NHS is like in Britain I'm wondering if there is another option or someone I can go and see privately?

It seems like a mine field of advice out there, so far I haven't taken many steps as I am unsure what are the right steps, apart from buying in a load of tablets; L-carnitine, Omega 3-6-9 - which includes Vitamin E.

I apologies as I dare say all these questions have been answered in previous posts but I have been reading hundreds of posts and seem to be getting more and more confused but mainly shocked by the amount of people suffering from this.

Thank you for you time.

[Skjaldborg]

trekky,

Sorry you have to be here but we are glad you found us. I will try to keep this as short and clear as possible in answering your questions. (Also, just to be sure, have you read this post yet? MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums
There might be some additional info in there that would be useful to you)

First, I suggest calling various urologists in the NHS system and ask if they prescribe to pentoxyfylline, also known as trental. I came down with Peyronie's disease at age 29 and was on pentox/trental for 8 months. Within weeks my pain was gone and after 8 months I started seeing some physical improvement (reduced scar size and slightly improved appearance). I am not cured, but I have been off pentox for 4 years now and I still continue to see minor improvements with no worsening. Download these studies on Pentox here Pentox - Dr. Lue Case Study / Levine mentions his use of Pentox - Peyronies Society Forums and show them to the urologist.

Regarding dating and Peyronie's: by and large women don't care. You don't need to tell them you have a disease, just say you got hit with a paintball, have a little scar tissue, and move on. Concentrate on being an emotionally mature, thoughtful and caring lover and the ladies will be all over you. A man is greater than the some of his parts, particularly the penis.

Start wearing a cup for paintball. Seriously. Re-injury during the acute (painful) phase would be bad news. Also, use lots of lubrication for masturbation and sexual activity. Erections and sexual activity are good for blood flow and healing but don't go crazy. No reverse cowgirl or girl on top positions for now.

The hardest part of this disease is the mental aspect. You are going to have bad days where you feel awful. It's OK to feel bad, but it's important to turn frustration and anger into productive activities: run, hike, explore, play paintball. Do things that you love even if you aren't in the mood for it. Eat right and ease up on the boozing. Use this disease as an opportunity to make yourself a stronger and better man over all.

Good luck and feel free to PM me anytime with questions.

Regards,

Skjaldborg

[trekky]

Hi Skjaldborg,
Thanks for the reply containing lots of useful info/advice! - I shall take these onboard and try and contact a urologist instead of waiting for them to contact me.

I know nothing about urologists/ how to contact them, is there a certain urologist I need to ask for? ("technical names" for the specialists)?

Thanks for the advice, it is very much appreciated!

[Skjaldborg]

Hi Trekky,

I believe in the UK they are called "Andrologists." Read through this thread here: https://www.peyroniesforum.net/index.php/topic,21.msg27214.html#msg27214 for information on well-regarded andrologists in the UK.

I am in the US so I don't know how the NHS system works. Nonetheless, it can't hurt to contact the office of an andrologist you are interested in and ask them what the process for getting an appointment is.

Good luck!

-Skjald

[Noway]

hey trekky you dont say exactly what your penis is doing which im curious. Is it a curvature or impotence erectile dysfuntion. Im your age i could give you my treatment regimen which is working pretty good.

[james1947]

Noway

I am more than double your age but I would like also to know details about your treatment that you say is

working pretty good

James

[Noway]

I first started off with pentox which worked well and then took cialis. Im also taking some coq10 which helps alot. I have a traction device but it keeps slipping out my doctor prescribe this one too me and on the next visit will show me how to wear it.

[trekky]

hey trekky you dont say exactly what your penis is doing which im curious. Is it a curvature or impotence erectile dysfuntion. Im your age i could give you my treatment regimen which is working pretty good.

Hey, Sorry I haven't been online for a long time.
I eventually received an appointment to go see a Andrologists but stupidly mistook it for being at my local hospital not the one which was an hour away, so I failed to attend the appointment in time, thus I now have to wait another month - my own fault! - but atleast I do have an appointment booked, not that I'm overly comfortable with talking about this issue.

At the moment the issue is curvature to one side and slightly upwards, Things haven't really improved, the pain went away slightly for a short period of time but it seems to have returned.

Glad to hear there is light at the end of the tunnel! - how long has it taken to see some form of improvement? As for a possible treatment I can't say I've ever heard of "coq10"  

[james1947]

trekky

Some information regarding CoQ10 and other oral meds:
Oral Treatments General Information - Peyronies Society Forums
Hope it helps

James

[Noway]

i actually brought up coq10 with my doctor and he sais its a good choice to take.  

[trekky]

Hi all,

First of all, I would like to apologies for not coming back here sooner! - Where has the time gone!? months just seem to fly by.
Secondly, Thank you for the wealth of information/advice it is very much appreciated!

Quite a few things have happened since last May, I 'eventually' got to see a specialist after waiting months, he basically told me to stop taking such products as L-carnitine, and Vitamin E as there was not sufficient evidence to say they worked, he said it was a waste of money.   - The basic outcome was to keep a record of the length, curvature, angle and see how it goes as apparently the condition can sometimes cease without any treatment, I have an appointment booked next February to see how things are going, the only treatment option that was offered was surgical and that would only be available once they decided that it needed doing.

As for the condition itself, it still hurts to get an erection but the pain does kind of go away after a short time, the angle is still there but I haven't noticed it getting any worst.
I also met a lovely woman, I was truthful and upfront about my condition from the off and gave her the option to stop seeing me if she wished, thankfully she understood and it did not bother her one bit (or so she says), few months on and she's still seeing me, our sex life is good and the condition is more of a nuisance than anything else at the moment, I just hope that my condition doesn't progress, as it is I can cope with it, although my sex drive is not as it was, I'm not sure if this is just a phase, or the extra strong antihistamines that I am taking to combat dust allergies I suffer from my work place, or something else.. how knows, it's odd though.

Not sure where this message is going, just thought I would update my post as I consider that it's rude not to do so after everyone has kindly taken their time to reply to my request for help/information/reassurance, I once again apologies for the amount of time that has elapsed since my last communication! - It's shocking how quick the months have gone, but the past few months have been busy to say the least.

[Jonbinspain]

Trekky;

First of all, perhaps you might like to show your"specialist" this. There are several other studies all indicating ALC can be effective in treating Peyronies.

Acetyl-L-carnitine vs tamoxifen in the oral therapy ... [BJU Int. 2001] - PubMed - NCBI

He is right that some times this will resolve itself automatically, but these cases are rare. Personally, I think doing nothing, and adopting a "Let's see if it resolves itself on it's own" strategy is both foolhardy and bordering on unprofessional, on his part.

[jackp]

trekky

Let me reassure you that in about 25% of peyronies cases the curve will spontaneously correct just like it suddenly appeared. That is what happend to me.  Be aware when this happens you will loose penile size. Depending on the curve that can be 25%, more or less, depending on the the curve.  

To combat this the VED exercise is highly recommended. The single cylinder exercise I used is posted on the VED board. It will also help keep your penis healthy and reduce the curve.  

Jackp
http://jackp-penileimplant.blogspot.com