23yr old male with Peyronie's

[Tim468]

Response is located in "Progression of Peyronie's Disease" area

[MedStudent86]

Thank you for the response Tim, and to everyone else who has reponded and taken it upon themselves to private message me, the support on this forum has been phenomenal.

Tim, could you explain to me how the VED is able to remodel tissue? Does the negative pressue cause the plaque to be broken up? I'm still foggy on how exactly this works.

I have started 400IU Vitamin E PO BID. I can get a script for just about anything, so even if the Uro tells me to go screw, I'll handle it. So far the suggestions have been Pentox and Trazodone. I am also considering starting 600mg/wk Testosterone Enanthate, and Proviron 15mg PO QD . I'm also considering rHGH at 2iu IM QD. I'm a little hestitant to use an SSRI for erections, when I can use a supraphysiologic dose of Testosterone and achieve the same or better results without messing with my brain chemistry as drastically. Has anyone here considered Pramipexole(dopamine agonist) for the night time erections as opposed to Trazodone? I'm just kind of speaking outloud here. I think that Proviron would be beneficial for the older members that have low testosterone as this drug binds to SHBG (Sex Hormone Binding Globulin) allowing more free testosterone to become bioavailable. Just a thought.

So far things I have been suggested through here and PM are:
Pentox
Vitamin E
VED
FastSize

Am I missing anything else?

You are right Tim, the peer reviewed literature on this disease is sparse. Honestly, even finding things in the text explaining the disease process has been a struggle. Some members have asked if I had any Erectile Dysfunction prior to the injury, and I responded no. I have had no trouble achieving firm rigid erections prior to the injury, and after the injury. However, now they are somewhat painful/uncomfortable and the mental stress FROM the condition has made it really tough for me to get into the mood so to speak. I have avoided all sexual contact since the onset of symptoms, and suspect I will continue to avoid sexual contact until symptoms are attenuated somewhat.

Hi MS86,

Well, I am not a med student - not any more. But I had Peyronie's before I went to med school and I still have it a few years later. OK, 35 years later. It was scary then and less scary to me now.

You will not find any good randomized clinical trials (RCTs) on this disease. You will find multiple small studies lacking statistical significance, or more commonly have a p-value, not no clinical significance.

Given the acuteness of your injury, you may yet go back to where you were with time and not stay where you are now.

To avoid it getting worse, though, most of us would recommend that you do the following:

1) Vitamin E using a broad spectrum product.
2) See a urologist who is up to date and get him to prescribe Pentoxifylline ("Pentox").
3) Get a good quality VED and a pump with a gauge (some do not think that is needed - I do) and pump and release to encourage good blood flow, but also remodeling of the tunica.

You are right - a VED may make it worse. It is our collective experience here, though, that it does not when used properly (A case report in the literature can be found of a man who developed Peyronie's from abuse of the VED - he pumped for hours to very very high pressures). You can start with low pressures and go from there. A protocol is in common use here to use variable sized cylinders - the notion is that the "tight" cylinder will exert a longitudinal pull, whereas the slightly larger ones will allow for lateral expansion on "dents".

You may want to take Advil at 800 mg 3 times a day for the next two weeks for an acute injury.

Do not engage in any rough sex that might hurt you more (some do that - to "prove" to themselves that they are OK).

Hang in there. You are getting good advice here - consider taking it. Please ask for feedback on your urologic visit (or vent about it!) as e find most guys go to several docs before finding a good one.

Tim

[Tim468]

Hi MS86,

Well, I am not a med student - not any more. But I had Peyronie's before I went to med school and I still have it a few years later. OK, 35 years later. It was scary then and less scary to me now.

You will not find any good randomized clinical trials (RCTs) on this disease. You will find multiple small studies lacking statistical significance, or more commonly have a p-value, not no clinical significance.

Given the acuteness of your injury, you may yet go back to where you were with time and not stay where you are now.

To avoid it getting worse, though, most of us would recommend that you do the following:

1) Vitamin E using a broad spectrum product.
2) See a urologist who is up to date and get him to prescribe Pentoxifylline ("Pentox").
3) Get a good quality VED and a pump with a gauge (some do not think that is needed - I do) and pump and release to encourage good blood flow, but also remodeling of the tunica.

You are right - a VED may make it worse. It is our collective experience here, though, that it does not when used properly (A case report in the literature can be found of a man who developed Peyronie's from abuse of the VED - he pumped for hours to very very high pressures). You can start with low pressures and go from there. A protocol is in common use here to use variable sized cylinders - the notion is that the "tight" cylinder will exert a longitudinal pull, whereas the slightly larger ones will allow for lateral expansion on "dents".

You may want to take Advil at 800 mg 3 times a day for the next two weeks for an acute injury.

Do not engage in any rough sex that might hurt you more (some do that - to "prove" to themselves that they are OK).

Hang in there. You are getting good advice here - consider taking it. Please ask for feedback on your urologic visit (or vent about it!) as e find most guys go to several docs before finding a good one.

Tim

[MedStudent86]

Thanks man...I have been trying to avoid having erections, because it makes me literally sick to my stomach to see the drastic change that has occurred. The psychological effects are having a severe toll on my emotional state. I am under a tremendous amount of stress and pressure with my schooling, and to add this into the mix is just putting me on the edge of a mental breakdown. I suppose it may help after I speak with the urologist, but if he doesn't know much about Peyronie's I am probably going to be extremely frustrated and angry. I feel very angry as it is, that I can't just be normal like every other 23 year old. And this came on SO suddenly. Like I said I have had the congential curve all my life and it was never a problem. But this is drastic, indentation on the right side or hourglassing, and a more pronounced curvature to the left. In addition the reduction in length and girth is a HUGE ego hit to me. I have been avoiding all sexual situations since the onset of symptoms. I am having a really hard time dealing with this mentally. I have been kicking myself in the ass so much because of the poor decisions I made which led to me having this condition. I have read the various literature on pentox, verapramil(injections and DMSO), and the various other methods. To be honest, the mechanical methods scare me, I am afraid to do more damage, and I would like to read some peer reviewed research indicating its safety and efficacy. Mike if you would, please shoot me a private message or an e-mail, thanks.

Med,

I am going through the same thing as you - maybe 6 months further down the line.  I have learned a lot here & from 2 urologists, 1 of whom many here see (Dr. Levine).  All of this is just based on my opinion & experience... but here goes: First, you want to attack from the mechanical front. Scar tissue is naturally going to want to contract, so I would suggest looking up FastSize (promoted by most urologists who study Peyronies Disease) - and using it asap.   You can also use a VED.  The fastsize device just has more studies on it, but many people here have had positive VED experiences.

From a chemical front, verapamil injections are the most recommended by doctors,  but I would be very very cautious about them right now.  I am not happy with them at the moment (though it's hard to say if I got worse from them or from the disease progression) & this board has many unhappy customers of these injections.  They hurt and they can make the situation worse...potentially.  

Many urologists are clueless about Peyronies and will give you vitamin E and tell you to come back in 6 months.  The top Urologists who specialize in Peyronies Disease will prescribe Pentox - but Levine (major Peyronies Disease doc) says Pentox isn't significantly different than a placebo in one study (for Peyronies Disease aesthetics - it can help pain, which happens later on).  L-Arganine is a supplement that he recommends and many people here take.   Having regular erections & nighttime erections is also important...so if you are not having these, looking into the viagra class of drugs & also a small dose of Trazodone (25 mg) at night could be helpful.  

You should see a doc who can do an ultrasound of the penis & determine how much plaque you have and how much, if any, has calcified - though this may not alter your treatment recommendations that much...it will give you a baseline at least.

[MikeSmith]

Med,

I am going through the same thing as you - maybe 6 months further down the line.  I have learned a lot here & from 2 urologists, 1 of whom many here see (Dr. Levine).  All of this is just based on my opinion & experience... but here goes: First, you want to attack from the mechanical front. Scar tissue is naturally going to want to contract, so I would suggest looking up FastSize (promoted by most urologists who study Peyronies Disease) - and using it asap.   You can also use a VED.  The fastsize device just has more studies on it, but many people here have had positive VED experiences.

From a chemical front, verapamil injections are the most recommended by doctors,  but I would be very very cautious about them right now.  I am not happy with them at the moment (though it's hard to say if I got worse from them or from the disease progression) & this board has many unhappy customers of these injections.  They hurt and they can make the situation worse...potentially.  

Many urologists are clueless about Peyronies and will give you vitamin E and tell you to come back in 6 months.  The top Urologists who specialize in Peyronies Disease will prescribe Pentox - but Levine (major Peyronies Disease doc) says Pentox isn't significantly different than a placebo in one study (for Peyronies Disease aesthetics - it can help pain, which happens later on).  L-Arganine is a supplement that he recommends and many people here take.   Having regular erections & nighttime erections is also important...so if you are not having these, looking into the viagra class of drugs & also a small dose of Trazodone (25 mg) at night could be helpful.  

You should see a doc who can do an ultrasound of the penis & determine how much plaque you have and how much, if any, has calcified - though this may not alter your treatment recommendations that much...it will give you a baseline at least.

[Skjaldborg]

MedStudent86,

I too got Peyronie's due to a minor injury during intercourse at a young age (29). Feel free to ask any questions you may have. As far as treatment goes I suggest asking your urologist at your upcoming appt to prescribe pentoxifylline for at least 6 months (400 mg 3 times daily). If that urologist refuses to prescribe it, find one who will. Many forum members here have used it and it has been shown effective in limited studies to encourage healing (i.e. reducing plaque size), to reduce pain and to a very limited extent, to reduce curvature. One key study by male sexual health specialist Dr. Lue may be found here: http://www.peyroniesforum.net/index.php/topic,772.0.html (you can print these out and take them to your urologist). I took pentox for 8 months and it completely got rid of my pain. Hourglass deformities did not improve much though.

As far as other treatments, many men here use or have used VED (vacuum erection devices) and have reported some success with it in reducing curvature and hourglass deformity. That thread may be found here: http://www.peyroniesforum.net/index.php/board,38.0.html. Forum member Old Man is particularly knowledgeable on the subject and always takes time to answer questions.

Best of luck and feel free to PM any time with questions.

Skjald

[GS]

MS86,

I'm sorry to hear you're one of our classmates.  Obviously, you will want to read as much information as you can from our website and forum, but, in my opinion, the first things you need to research are the VED and Pentoxifilline.  You will need a prescription for the Pentox, so it would be a good idea to ask for that when you go to the urologist.

Don't be surprised if the urologist knows very little about Peyronies and don't let him or her discourage you.  Mine did.

There are a lot of experienced people at PDS and a lot of information to garner.  Good luck.

[MedStudent86]

Hello everyone,

This is my first real post here... I'm a 23 year old medical student, and have just recently (4-6 months) noticed a drastic change in my erections, including a reduction in length and girth. For all of my life, I have had a congenital curvature to the left, however it was mild (10 degrees off midline, at best) and never interfered with intercourse. Additionally, I was considered by most partners to be very large and somewhat uncomfortable to have intercourse with. Well, I fear those days are over, for now. I came home from the bar this past February 2010, and myself and the girl I was with were pretty inebriated. It was about 5am in the morning, and we were attempting to have sex, but from the massive amounts of alcohol I consumed, it was very hard to achieve a full strong erection. So essentially, we continued to have sex for about 45minutes with a less than stellar erection. I thought nothing of it, until the next day, I woke up extremely sore on the side of the congenital curvature. It took about 3-4 days to feel back to normal, but after that I got very busy with school and didn't really engage in any activities for about 3 weeks. That is when I noticed a slight slight change in erection curvature. It curves much more drastically to the left, and now slightly upwards (approx 10 degrees) as well. There appears to be a stricture right below the head of the penis, which causes an hour glass shape around the bend.

Clearly, there was trauma preceding the onset of symptoms. This is where I am at now. I have an appointment with a Urologist next Thursday. I will report back with his findings and any dx he makes, but based on the literature, I can be about 90% certain it is Peyronie's due to trauma. A medical education does not even begin to touch on something like Peyronie's, certainly I find the anecdotal experiences posted on this board to be far superior to anything in the current literature. It seems this is a disease that warrants much more attention, as it can and has had a severe impact on quality of life for me. The curvature itself is not even that bad, it's progressed to maybe 20 degrees from midline, however its the reduction in size and girth that is more troubling to my psyche. Any help that you guys may be able to offer me in the way of treatments that have been most successful would be appreciated. I am following Xiaflex very closely, and I would seek out the phase III trials, however, I do not think it's worth having a 50% chance of being in the placebo group, and having saline injections into your penis. I'd be much happier waiting a year for them to bring the drug to market, or perhaps discussing an "off the label" use with a Urologist, than being a part of a study that could make symptoms worse by inducing additional trauma.

MS86