Intro and Cry for Help

[Stressed]

Hello All,

Age: Im 28

What did your medical doctor conclude?
Went to my GP couple of days ago and he said I have peyronies. Never heard that name before. He never perscribed anything just gave me a link to this forum. He referred me to a surgeon. So waiting to hear from him. To be honest I dont want that.

How long have you had symptoms?
I think I have curve in my penis for good 10-12 years but I never thought that Its an illness until recently when I decided to ask my GP during routine visit as I thought its turning to left more.

What are your symptoms?
I have a left curvature of about 40-45 degrees when erect. During flaccid state it looks twisted. There is a dark skin near the top.
Never had issue with erection so I never thought that its an illness.

What treatments have you tried and what were the results?
My GP prescribed me nothing. He said only surgery is the option but I dont want that. I have decided to use John Park's treatment plan while I wait to see my surgeon. I am ordering a traction device as well.

Do you have insurance or means to get treatment?
I dont have insurance and I think I cant afford expensive treatments. Money is tight

where are you in dealing with the psychological aspects of Peyronies Disease?
I felt like this diseases is the worst, I mean if you have cancer you can talk to your family members and work colleges, they all sympathise but with this evil you cant tell anyone. You are on your own. Thank God for this site. A ray of light in utter darkness.

Are you in a relationship?
I am single now and I guess I will be until I do something with this diseases. Not sure if I can face any girl while suffering from this or until I get at least 20% correction.

Lastly Please suggest any way (non surgical) that I can use to get some correction in curvature ??

Stressed  

[Jonbinspain]

Ok, firstly see a specialist and establish that it definitely is Peyronie's. your GP sounds pretty useless - let's hope the specialist is more knowledgeable.
In my experience, they do vary. I saw a urologist, here in Spain, who prescribed Vitamin E. Now, Vit E is helpful in cases of this disease, but it's hardly advanced madicine. The problem you may encounter is that many in the medical profession don't take this disease seriously. However, for those afflicted with it, it's extremely serious.
For now, I would start there plus maybe CoQ10 also. Neither will harm you if it's not Peyronie's.
IMO, surgery is the last recourse. However, that's jumping the gun.
If you are diagnosed with Peyronie's you will find more help and support on this forum than you will get from the majority of the medical profession.
Good luck. Let us know how you get on.

[Stressed]

Well there could be a wait of two weeks before I see a specialist. I just dont want to waste any more time. So I started on some (seemingly) harmless treatment.

I will definitely post my progress here. At the moment Im using DMSO with Vitamin E gel (from capsules) and Potassium Iodide as a topical treatment. Also I am talking Accetyl-L-Carnitine supplement.

I have ordered a traction device from ebay (cheap one) just to check how it feels before I spend some money with other known brands.

I'll also order CoQ10 and some Pentox as after reading threads here, everyone seems keen on pentox.

My GP just did not care even though I was shocked. Lets see what surgeon do. First question I'm going to ask him is this "How many Peyronies cases have you dealt with?" hopefully the answer would be in higher numbers.
This forum is a real blessing. Best of luck to all suffering with this disease.  

[MattFoley]

Stressed, I agree with Jonbinspain.

Pentox is critical so I'm glad you're taking that. And, you may wish to add Citrulline Malate to your protocol as well instead of Arginine.

Also, when you see your doctor, insist on a full panel of blood work be done. Have them check:

Testosterone Total
Thyroid Panels (T3, T4, TSH)
IGF-1
CMP Profile
Lipid Profile
CBC w/Diff profile
PSA
C-Reactive Protein
DHEA-sulfate
LH
Estrogens

Then, let us know the results.

[Hawk]

Stressed,

Welcome to the forum.  

I echo much of what has been said but for starters, you told us very little that would confirm a diagnosis of Peyronies Disease,  A curved penis is but one symptom of Peyronies Disease. If you have been aware of the curve since adolescence maybe it is congenital unless you remember not having a curve.

Also, I have an important question.  Did you say your doctor gave you a link to this forum?  If so, what did he say?  How did he come by the link?  Was there conversation about the forum?

Hawk

[Stressed]

MattFoley
I will keep that in mind and print the list that you mentioned and take it with me on my appointment.
Do you mind explaining why Citrulline Malate ? just wanted to know how this will help. Is this the best way to get some sort of
curvature correction?

Hawk
I definitely remember having a straight penis back in early teens, also during my half erection I see the hour glass shape (know this term from reading some posts here) as well. But its not visible during full erection. In full erection I only see a curve to the left.

I asked the same question to my GP that are you sure I have a disease then he looked at me and said "Proof is in the pudding"
he was referring to a photo of my curved penis. I never showed him my penis I just took few photos on my phone.
Now Im thinking that I made a mistake. But I was worried that how Im going to have erection in front of him.

My GP did a search on this diseases in front of me on his NHS software and then he clicked on a some links and wrote down this domain address http://www.peyroniessociety.org. He said if you are not willing to surgery then this site can point you to some non surgical treatments. He did show me this forum in his clinic but only for few seconds. He also said that I have to see a surgeon as he'll be the best person to advise me.

[Hawk]

Stressed,

Thanks for the reply.  That is very enlightening information.  

Your mention that your penis was straight is suggestive that you could have Peyronies Disease but obviously a picture of a curved penis is not since it could be either a congenital curve or normal scar from an injury.

Do you recall the process by which you went from straight to curved?

Also, a 40 degree curve is not likely to prevent you from having sex and may even work fine in a common missionary position, especially if mild pressure straightens it even by a few degrees.

[Jonbinspain]

Seriously, get to see a Urologist ASAP!  Your GP sound even more lacking in knowledge about this disease than i first thought. it sounds like he'd never even heard of the disease until nhe looked it up!.
If he's recommending a surgeon right away, it's clear that he knows absolutely SFA about Peyronie's.
your course of action, should you be diagnosed with Peyronie's, is up to you. But again, surgery is the last resort in the opinion of most experts.

[Stressed]

Hawk
I am sure I have injured my penis back in the days by some aggressive masturbation routines (now Im thinking about it and they seem very stupid - what I did to myself)

Also I do have kind of dark skin just below my penis head, the skin is like burned or something. But 70% of the shaft is fine it's only the area just below the head. Does this mean anything?
During erection even a very mild  (just putting a thumb to the left and index finger on the right middle shaft) pressure straightens it quiet a lot. I am hopping that I can get some correction in curvature by using traction device when it turns up in post.

Jonbinspain
Yes man, I am waiting to hear from surgeon. I have to follow the National Health protocol. Dont have insurance so cant go private. You are absolutely correct about my GP and I am not thinking about surgery (touchwood). I was looking at some videos on youtube and they are not very pleasant.

Thanks for all the support.  

[Skjaldborg]

Stressed,

Welcome to the forum. Two things:

1. You might not have Peyronie's disease. A urologist must confirm the existence of scar tissue. It is entirely possible that you had a straight penis in early adolescence that changed to curvature after puberty due to the corpora (erectile chambers) having slightly different lengths. Get confirmation from a qualified uro.

2. That dark spot is probably your circumcision scar. If you are not circumcised, it may be some other unrelated skin pigmentation anomaly. Either way, it's not related to Peyronie's.

Even if you do end up confirming Peyronie's, it's not the end of the world. I got this at 29 (now 33) and I'm getting along just fine after taking pentox.

Good luck!

Skjaldborg

[Stressed]

Skjaldborg

Thanks for the comments. Did pentox helped you to get some sort of correction in your curvature ?

[Skjaldborg]

Hi Stressed,

I only had a tiny bit of curvature with Peyronie's, my main problem was hourglassing and loss of length. I took pentox for about 8 months, during which time my pain went away and the scar tissue shrank significantly, there wasn't much change to the hourglassing/shrinkage at that time though. The deformities were quite noticeable.

However, about 6 month to a year after stopping pentox, I returned to about 95% of my pre-Peyronie's length and the hourglassing is much diminished. My wife has said that unless you told her, she would not notice the deformities.

Once you conquer the acute inflammation, it takes awhile to see improvement since the tunica does not receive a lot of bloodflow, so it is slow to heal. Improvement are possible and worst case scenario there is always surgery.

Best, Skjald

[Stressed]

Update

I got my appointment confirmation with urologist yesterday. I am going to seem him on 30th Jan.

I have also tried pentox for couple of days but have to say it was not pleasant as during second day I had a headache a nasty one and at night I woke up few time. I have stopped it and now Im feeling fine.

Does anyone else has this sort of effect with pentox? shall I continue it or wait for my URO to confirm?

[MattFoley]

Pentox does have some side effects that are usually overcome with a bit of time and patience. When I first started it, I was urinating so frequently that I became dehydrated. It doesn't happen anymore and I'm taking 2,400 mg/day as prescribed by my doctor.

If you're getting unpleasant side effects, please consider what a forum member here advised me: Cut the pills and slowly ramp up to the recommended dosage.

While I don't advocate taking prescription drugs without a doctors authorization, if you already have the prescription, you are free to do as you please. Just take no more than 400 mg/3x/day until your doctor says otherwise.

[Stressed]

Well I dont have a prescription. I started on my own. I'll try cutting a pill in three.
I will also tell my uro that im taking this. Lets see what he says.
Thanks for your reply

[MattFoley]

Stressed, unless your doctor has an extremely valid reason to deny you the Pentox, I would go see another doctor since all the big doctors treating Peyronie's prescribe Pentox as a first line of defense/attack. If it were me, I would insist on the Pentox, but again, that's just me.  

[funnyfarm]

The instructions say not to split the pentox pills,  otherwise they are not sustained release and may have worse side effects.

[Stressed]

I'll hang fire on Pentox until I see the doc. What u guys think about CoQ10/ubiquinol whats the recommended dose ?
shall I mention that to my doc as well? I see loads of member recommend this.

[MattFoley]

I agree with funnyfarm that you're not supposed to split the pills since the instructions tell you not to do it.

However, I can only relate my personal experience and what another member here suggested and that is, to split the pills in half for a short ramp up period. That worked for me with no additional side effects. I did that for a few days until I could tolerate the Pentox.

Having said that, I do not recommend anyone do anything that is in contrast to the instructions of a medication or the instructions of a doctor.  

[Stressed]

An update

Had meeting with urologist, nice fellow. He thoroughly examined my penis by press, twisting and turning then said you dont need any treatment. Just get on with it, the only medication is radiation therapy and surgery and these will leave you in mess. There are no lumps and no pain so just be normal.

Then I asked him about blood work and pentox and he said again that I don't need any of this as an medication will do wrong then good.

Not sure what to do now, shall I seek a private uro or just get on with life?

[Skjaldborg]

Stressed,

Go to another uro. Many uros know little to nothing of this disease and very few are up to date on treatment options. Try to find a uro who will do a flaccid ultrasound to find out where the plaque is. Get a prescription for pentox. DO NOT cut pentox pills ever! They are designed to be sustained release and will not work properly if you do so. You will feel rotten and not get the benefits.

Good luck!

Skjald

[Stressed]

Anybody know any good uros in Manchester England ?
I'll continue on Pantox. I can only take one pill a day any more and it makes me sick.
I remember to not break it.

[james1947]

Stressed

First I will second Skjaldborg, you need to find an other uro and urgently.
Second, your Pentox is slow release? The fast release made me also sick.
Third, again Pentox, our body is getting used to those medications, now I am on 3*400mg daily, I started with one 400mg daily.

James

[Stressed]

It say Pentoxifylline Extended (Trental 400) so im not sure if its a slow release one or not

[Hawk]

I have almost certain that: Extended Release, Slow Release, Timed Release, Prolonged Release, Controlled Release are all interchangeable terms meaning the same thing and used by various drug companies in prescription and over-the-counter medications to indicate the pill is digested slowly.  This is usually accomplished by layering the pill in different layers that break down at different rates one after the other and release the drug into the body slowly. That is why these pills SHOULD NEVER BE CUT OR CRUSHED because that would make them instant release.

These pills usually have the initials CR, TR, ER on the label and/or right on the pill.

[Stressed]

Ah that makes sense, thanks for clarification Hawk

[funnyfarm]

Hawk I agree with you all variations of Pentox have inactive ingredients that slow the absorption.  However from my experience the rate varies significantly from manufacturer to manufacturer.  The pentox I have bought from river has by far had the slowest release and least side effects.  They are coincidentally also the largest sized pills I have purchased. However I have only tried three different ones, and the other two were from mexico.

All the pills have the same active ingredient, so in terms of efficacy treating Peyronies Disease they should all be equal.

[Hawk]

I would obsess over whether the ones from the on-line pharmacy were causing less side-effects because they were missing the drug or had a lower potency.

How would you know and what is the regulation or protection?

[funnyfarm]

I initially shared your suspicion.  However the Indian Pills are from Avantis, a multi billion dollar french pharma company, that has plants in India that ship drugs world wide, including the USA.   And secondly, I get the same flushing/redness effect in my hands and feet, and initial heavy urination, with all three pills.   So although there are no guarantees, I feel the pills are full strength.

If anyone else has tried River (Indian Avantis) pentox and does not think they were as effective please chime in.  I don't want to come across as a spokesman for the pharmacy.  

[Hawk]

Thats good info Funnyfarm.  I would like to think they are the real thing. Your side-effects are at least an indicator that the only evidence suggests they are the real thing.

[james1947]

I bought my Pentox from River and pleased with them
Funnyfarm is 100% right.

James