Open Questions on Peyronies Disease (That won't fit under any of our current topics)

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George999

Manrico,  I pretty much agree with newguy on this.  Because your symptoms seem to be systemic and not just limited to Peyronie's, I am thinking you might want to carefully consider LDN.  In any case, I think you should have your vitamin D levels checked and evaluated and at least get on Pentox if you don't want to pursue LDN.  My only concern with Pentox would be whether it might exacerbate one of your other problems.  The good thing about using LDN is that it seems to be helpful for such a wide range of problems, you would probably be able to use it without risking making something else worse.  - George

joe

Manrico,

I took Accutane for acne, in 2002.  I didn't develop Peyronie's until 2007 after an injury.  Also my father has Peyronie's so it's in my genes.  I never thought of a link to the Accutane before and don't feel there is a link in my case, but who knows.

Joe

Woodman

Manrico- My brother took Accutane when he was about 18 for acne. This was back in 1989 hes nearing 40 now but he complains a lot of joint & back pain. He never can explain it except just explaining it as getting a little older. He did have a bad reaction or side effect to the drug. He experianced like a Bi polar disorder back then they called it manic depression. It lasted for 6 to 9 months tapering off towards the end. He went from being a normal kind of shy guy. To a wild out spoken person not sleeping for 2 to 3 days at a time being a danger to himself and others. Wrecking trucks driving reculously etc. With lots of energy and hair trigger. You kind of get the picture. Then after about 2 months he would go into a depressive state just the opposite and would get to the point of not really leaving the house staying in side sleeping etc. It was hard to figure out it was before the days of the net. We finally figured it out with the help of the doctor. He quit taking it and it took a good year to year and a half for it to completely leave his system. Once it was gone hes been normal ever since. Its been 20 yrs ago.

If you do a search Iam sure you have it has some real bad reactions and side effects. I always told people I know not to take it unless you have no choice. If you do besure to have someone monitoring your behavor and personality. If it changes get off of it immendiately.

Woodman

despise

Hey guys I'm not to sure where I should have posted this. The problems I'm having with Peyronies Disease are stranger. I'm basically asking you guys if you have these same symptoms. I feel as if I could have another problem other then Peyronies Disease. I was diagnosed with Peyronies Disease but I'm suspicious I have something else. Possibly having Peyronies Disease and something else. My symptoms include of very large swelling of my flacid penis. I don't get erections normally except for night time erections. To get a full erection it takes a while of stimulation to masterbate. I have had erections that are straight to the left. Straight as a arrow but just completely to the left. When I get a rare full erection from masterbating its mostly straight but upwards to stomach. Other times its up and more the left. When I get a full erection and masterbate I cum almost right away. The ejaculation will hurt and the sperm is either yellow and brown or bright yellow. When I urinate my penis can be really tight curved to the left and then relaxes and gets swollen when I start to urinate. My peyronies is on the left side on the bottom but also after that the whole left side is hard. My urologist says it hasn't calcified yet and that it will go away in October but he always says that and I feel like it's not getting any better. I can't even sleep because my dick gets so swollen that i squish it trying to sleep on my right side. I can't sleep on my back because its so swollen it hurts and my anal hurts, maybe because of my hemeroids? Does anyone possibly think I could have something else going on? I mean I have urination issues as well. Whenever me and my friends drink they piss like a horse and for a while. I drink like 6 beers hold it all in my bladder and finally piss and its usually not a lot. I can feel pain while im urinating. I've told my urologist about this and he says my bladder is sensitive? I need help guys cause that urologist is free. I'm only 18 years old and I have no money. I'm thankful Glendale healthy kids is helping me out and getting me into that one urologist for free.

Hawk

Quote from: despise on August 27, 2009, 04:59:13 AM
The ejaculation will hurt and the sperm is either yellow and brown or bright yellow.


Despise,

Beyond ANY doubt, this has NOTHING to do with Peyronies Disease.  Have you had a digital rectal exam of the prostate and a PSA test?  If not, get to a urologist and get one now and go over your list of symptoms.  Some of your other symptoms also seem unassociated with Peyronies Disease but no aspect of Peyronies Disease can discolor ejaculate.  You could have anything from prostatitis to prostate cancer to several other issues going on and it is not an issue for self-diagnoses or internet diagnosis.  
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

ohno

Hey guys, I've had this horrid condition for about 14 months and my Doctor said it's too late for pentox and that I should use the traction device and start the verapramil injections. This is the probably THE expert on peyronie's (which aint sayin' much) on the east coast (nyc). The injections scare the hell out of me. I've started the traction (looks like a device from the mid-ages). I've got the hour glass effect at the base- lucky me! Do you fellahs think its too late for the pentox. Any guidance would be helpful. Thanks

George999

Quote from: ohno on October 04, 2009, 11:56:57 PM
Hey guys, I've had this horrid condition for about 14 months and my Doctor said it's too late for pentox  ...  Do you fellahs think its too late for the pentox. Any guidance would be helpful. Thanks

I don't know how he comes up with that.  I was more than 14 months along when I started Pentox and Pentox certainly worked for me.  I don't see anything at all in Dr Lue's literature that suggests that there is some time limit on starting Pentox.  I don't know where doctors come up with these ideas.  ???  - George

UK

George, can you explain what you mean by "pentox certainly worked for me"?

George999

Quote from: UK on October 05, 2009, 01:50:04 PM
George, can you explain what you mean by "pentox certainly worked for me"?

It stopped the inflammation and the progression.  I think any doctor that thinks verapamil injections can do better than that needs his head examined.  Traction, maybe, but traction can be used with Pentox.  In any case, I would avoid verapamil injections (or any other kind for that matter) like the plague.  - George

LWillisjr

Quote from: ohno on October 04, 2009, 11:56:57 PM
Hey guys, I've had this horrid condition for about 14 months and my Doctor said it's too late for pentox and that I should use the traction device and start the verapramil injections. This is the probably THE expert on peyronie's (which aint sayin' much) on the east coast (nyc). The injections scare the hell out of me. I've started the traction (looks like a device from the mid-ages). I've got the hour glass effect at the base- lucky me! Do you fellahs think its too late for the pentox. Any guidance would be helpful. Thanks

ohno,
Many uros will assume you are past the "active" stage and entering the stable phase which may or may not be true at this point. I think you will find the consensus here will say to get started on Pentox, it can't hurt. There is no documented wind of time when it is effective or not. Many (including me) have had the VI's and it didn't help much. There is a recent post from someone who stated that the VI's did help him. They are not pleasant, but I lean towards trying whatever you can. Many here will advise against them due to the invaciveness (sp?) of the needle. I'm one for trying all I can and not giving up.

Definitely start either the traction or VED (many posts here on both). The point is to try different methods as not any single therapy is the cure for us all. Surgery can be the last step, but there are many things to try prior to surgery.
Les
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

ohno

Has anyone here utilized heat therapy and if so, duration, daily, heat pads, jazuzzi, bath tub, etc? Any good results? Thanks (and thanks for the response to my last question)

George999

Quote from: lwillisjr on October 05, 2009, 10:52:33 PM
Many uros will assume you are past the "active" stage and entering the stable phase which may or may not be true at this point. I think you will find the consensus here will say to get started on Pentox, it can't hurt. There is no documented wind of time when it is effective or not.

I believe Dr Lue has 50 documented cases of reduction in calcification.  That would lead me to believe that Pentox can be helpful far beyond the "active stage".  From this I believe that the Dr advising ohno is ignorant when it comes to Pentox.  I would not want such a doctor advising me as to how to treat my Peyronie's.  In fact if I were him, being in NYC.  I would try to get an appointment with Dr Levine at Urology Specialists and get on an airplane to Chicago.  And I wouldn't fiddle around with the guy he is currently seeing.  - George

newguy

I do think that there's some sense in thinking that pentox is most likely to work when the condition is active rather than stable. For instance, if there is no pain at all, and no changes in curvature for 1 year plus, I'd think that pentox has about the same change of altering any penile scar tissue as it does changing any other long term scars on my body (not much). I can see the logic is using it to avoid or reverse calcification, or as a preventative meausure (in case of further injury), so I wouldn't rule out use completely, but I wouldn't expect changes in curvature to occur after the condition is stable, if pentox is being used. At that stage I see the VED as a good option. Just my view though.

Skjaldborg

Quote from: newguy on October 06, 2009, 11:26:11 AM
I do think that there's some sense in thinking that pentox is most likely to work when the condition is active rather than stable. For instance, if there is no pain at all, and no changes in curvature for 1 year plus, I'd think that pentox has about the same change of altering any penile scar tissue as it does changing any other long term scars on my body (not much).

In Lue's study, Pentox was effective in reducing some calcified plaque in a patient who was in the inactive phase. The patient continued to see beneficial effect after taking pentox for 2 years, reporting better erectile function without erectogenic medications. The nature of the drug as a blood thinner that increases tissue oxygen levels probably encourages some healing at every stage of the disease. I'm with George999 that Ohno's current doctor is a dope, just like most general physicians (and some uros) are when it comes to Peyronie's. Remember, it's because of ignorant and reluctant doctors like this that there is no cure for Peyronie's. Lay blame where blame is due.

-Skjald

newguy

Indeed Lue reported "regression of calcified chronic plaques in over 50 men treated with 6 months of pentoxifylline". Levine states that pentox (In animals) "has an anti-scarring effect particularly when the scar is just beginning to form". I do think that the effectiveness is maximised by taking it as early as possible. The sooner the better. Perhaps I'm being a bit too pessimistic and taking too many of my experiences from here, rather than what the professionals claim to have seen. Lue's words are helpful in getting urologists to prescibe pentox, but very low an actual detail. I wish he's provide more information relating to success stories that he has seen.


despise


I have gave my urologist a sperm sample and the test results came back normal. At the time I was drinking a lot of alcohol and caffeine so im assuming that was the reason I was having trouble with my sperm. I think I have been a little more paranoid then I should be so that was the reason of my concern. However is there a possiblity I could have something else going on? I would feel pain sometimes after ejaculating but also other times it seemed to be normal, again this leads me to believe it was the joose alcoholic beverage I was abusing with alcohol, caffeine, ginsing, and taunsine.


Quote from: Hawk on August 27, 2009, 07:56:32 AM
Quote from: despise on August 27, 2009, 04:59:13 AM
The ejaculation will hurt and the sperm is either yellow and brown or bright yellow.


Despise,

Beyond ANY doubt, this has NOTHING to do with Peyronies Disease.  Have you had a digital rectal exam of the prostate and a PSA test?  If not, get to a urologist and get one now and go over your list of symptoms.  Some of your other symptoms also seem unassociated with Peyronies Disease but no aspect of Peyronies Disease can discolor ejaculate.  You could have anything from prostatitis to prostate cancer to several other issues going on and it is not an issue for self-diagnoses or internet diagnosis.

despise

Quote from: ohno on October 06, 2009, 02:29:30 AM
Has anyone here utilized heat therapy and if so, duration, daily, heat pads, jazuzzi, bath tub, etc? Any good results? Thanks (and thanks for the response to my last question)

The only heat thereapy I have done is a hot bath and it does seem to help it relax. I tend to get very hot and dizzy so I can't last long in a hot bath but let me explain what happened. At first my penis was just to the left while under the hot water but then I noticed it went to the right! To me that was a very good thing and then it went into the middle. So it definitely seemed the hot water did something to the peyronies. I also notice when I get out my penis is a lot bigger. So im thinking it helped the plaque in some way and let more blood flow in my penis. From this alone I am inerested in heat therapy. Can anyone explain to me the other heat treatments please?  

newguy

Quote from: despise on October 11, 2009, 09:42:43 PM
At first my penis was just to the left while under the hot water but then I noticed it went to the right! To me that was a very good thing and then it went into the middle. So it definitely seemed the hot water did something to the peyronies. I also notice when I get out my penis is a lot bigger. So im thinking it helped the plaque in some way and let more blood flow in my penis. From this alone I am inerested in heat therapy. Can anyone explain to me the other heat treatments please?

When you mention that your penis was to the left, then right then the centre, over what period of time are we talking? Was it fully erect in all of these states (e.g fully erect but pointing to the left, then fully erect ten pointing to the right). Did any change in size occur during this time? If there is scarring on one side, if usually bends one way. I can understand changes over a period of time, but from the description is sounds like something sudden. I never really get what people mean when they say stuff like this so I want to get to the bottom of it :).


Also, can I have a quite recap of the treatments/supplements ou're currently taking, and how your pain/situation is since you joined?  

despise

Sorry about that newguy =P remember im young so its hard for me to explain things as well as you guys but I am trying. Well first ill explain how having a bath was when I first got peyronies. My penis would somewhat get a erection but not quite. I guess you could say it got partially but it never got really hard, just got a little larger than normal by being filled with blood. Now it seems to be less large and no, no erection. While I was laying down waiting for the water in the tub, my penis was touching my left leg. When my penis was finally submerged in the hot water it was to the left, diagonaly. It did not take more than 15 minutes for it to move to the right, very odd I know. It felt as if it was relaxing the plaque and somewhat stretching it. Then it went into the middle and then finally back to the left. So the hot water definitely did something and this was actually earlier today =P I feel no difference now but I am convinced the hot water did something positive so I am going to try to take a hot bath everyday.

despise

Quote from: newguy on October 11, 2009, 09:53:19 PM
Quote from: despise on October 11, 2009, 09:42:43 PM
At first my penis was just to the left while under the hot water but then I noticed it went to the right! To me that was a very good thing and then it went into the middle. So it definitely seemed the hot water did something to the peyronies. I also notice when I get out my penis is a lot bigger. So im thinking it helped the plaque in some way and let more blood flow in my penis. From this alone I am inerested in heat therapy. Can anyone explain to me the other heat treatments please?

When you mention that your penis was to the left, then right then the centre, over what period of time are we talking? Was it fully erect in all of these states (e.g fully erect but pointing to the left, then fully erect ten pointing to the right). Did any change in size occur during this time? If there is scarring on one side, if usually bends one way. I can understand changes over a period of time, but from the description is sounds like something sudden. I never really get what people mean when they say stuff like this so I want to get to the bottom of it :).


Also, can I have a quite recap of the treatments/supplements ou're currently taking, and how your pain/situation is since you joined?  

Oh and I aplogise once again for not answering your question fully. I am only taking vitamin E 400, Vitamin d3 and sometimes fish oil. I stopped taking Vitamin E 400 and noticed that my peyronies got tighter and worse. So I immediately got back on it. Would you recommend me getting on any other supplements? I would say my pain has subsided but I still do feel pain on the left where my peyronies is located. So basically its not completely gone but its not as bad.

newguy

despise - I'll try to state the question in a different way. When you get a very hard erection does your penis always point in the same direction? I'm trying to eliminate the possibility that you are talking about the movements of a semi flacid penis. All that matters is what your penis is like in an erect state.

despise

When I get a erection it always points in the same direction. I don't get erections when I'm taking a bath but I guess you could say it gets semi erect because its not completely flacid either. Hope I'm at least somewhat helping =P

chiguy

I have monitered the forum for a month or so and finally decided to join. I know there are some knowledgeable folks on here. To give you all a little bit of information:

I am 24 years old. One morning I woke up and had significant pain in my groin and was unable to get an erection. I also experieced browning on my shaft. This continued for 3 weeks. I went to a urologist who said to wait and see. This was March 2009.

Fast forward two months: The pain was present only in erections, which had begun to curve (I always had a slight curve). I also felt a tightness in my erection. The doctor again said to wait and see, but gave me motrin for inflammation.

In August 2009, I switched to a different urologist who diagnosed Peyronie's almost immediately after feeling the plaque. He prescribed 1600 mg of vitamin E, 20 days of Prednisone, and cortisone (for the browning). By this point, the erection was at a 35-40 degree angle upward with a significant leftward rotation on the head. The pain was cut in half due to the prednisone. My doctor it appears is very good. He does not want me to pursue surgery at this point.

I still experience some pain in my erection and it appears the curve has not significantly changed since August. The browning all over the bottom 2/3 of the shaft has not gone away, but the doctor had me discontinue the Cortizone. He also gave me alleve, but it doesn't do much for the pain on erection some of the time.

I have no problem getting or maintaining an erection.

Now for the questions:

1. Is there any reason why on some days I experience pain with erection (and the plaque is hard as a rock) while other days I do not experience as much pain (plaque is present but not as hard)?

2. The penis doesn't look that odd curved upward, but the leftward rotation is weird looking and makes it hard to function. Have any of you ever just had a rotation at the head fixed as opposed to the entire penis?

3. It feels like I have a lot of plaque on the dorsal side, but it doesn't curve upwards as bad as others who have this disease yet say they only have a little plaque. Any thoughts on this?

4. In my condition, what other medications could I press my doctor for to get rid of the pain and stabilize (if I am already not stabilized)?

5. How do you tell if the plaque begins to calcify? (my biggest concern)

Thanks


jackp

chiguy

I will try to answer some of your questions. First I believe in vitamin E it thins the blood there fore you get better blood flow to the penis.

It usually takes peyronies 18 months to stabilize. During that time you need to start VED therapy. Go to the VED board and do some research. The goal is to keep the penis healthy and keep from loosing penile size. The most common complaint with peyronies is loss of size, length and girth. The VED is the best therapy for that.

As for pain, I did not have pain with my peyronies, I took 800mg of ibuprofen twice a day for arthritis, so that may be a reason. Other pain killers will block feelings to the glans and make erections and ejaculation more difficult.

You will know when the plaque has calcified when it turns hard.

Like I said at this point the Vitiaman E and proper VED therapy is your best bet.

Jackp



chiguy

Thank you Jackp.

Would it be safe to assume that my plaque has not yet calcified? Sometimes it feels hard, yet other days I can feel it, but it is not very hard to the touch.

I will look into the VED, though I am under the impression that it is best used for people that do not get active use of their genitals or already have experienced erectile dysfunction?


jackp

chiguy

The VED therapy I recommended is not for sex it is to keep your penis healthy, help reduce curve and prevent loss of penile size.

Like I said before the number one complaint of men with peyronies is loss of penile size. You do not want to wake up one morning and wonder where did 1 1/2 inches of my penis go.

The 3 cylinder protocol is recommended but I already had a Rx single cylinder. Old Man worked with me and worked up a therapy. I have it posted on the VED board under Single Cylinder VED Therapy.

You can see how the VED helped me by going to My History, a link is posted at the bottom of this post.

The therapy takes time to work. 3 months of more so just be patient.

Any questions do not hesitate to ask

Jackp

chiguy

Hey Jackp,

For some reason my PMs aren't showing in my outbox so I am not sure if you will get them. Thanks again for all the help.

I have an appointment with the urologist for a followup in less than 2 months. Do you think it is beneficial to wait to see him prior to ordering a VED? He sees a lot of Peyronie's patients and doesn't rush anyone out of the office, so I trust him as a good doctor.

What is the difference between the one and three cylinder VED devices?

I have full insurance so maybe if I get it thru his office the insurer will pay.

Thanks

BentYoung

Does anyone experience accompanying urinary issues with their Peyronie's? I am 24 year old male with Peyronies Disease for as long as I can remember (hourglass and upwards curve). I have had painful urination with cloudy urine since I can remember as well (maybe once a month). My theory is that my plaque constricts my urethra and causes bacteria buildup that leads to infection. Anyone have comments or similar stories?  

George999

Quote from: BentYoung on November 16, 2009, 01:12:17 AM
Does anyone experience accompanying urinary issues with their Peyronie's? I am 24 year old male with Peyronies Disease for as long as I can remember (hourglass and upwards curve). I have had painful urination with cloudy urine since I can remember as well (maybe once a month). My theory is that my plaque constricts my urethra and causes bacteria buildup that leads to infection. Anyone have comments or similar stories?  

Brent,  Fred and I am both in the same or similar situation as you are.  My theory is a bit different than yours.  I am thinking that Peyronie's itself is part of a broader inflammatory syndrome that affects the whole body.  In some cases the only effect is Peyronie's.  In other cases it includes other things such as, in our cases, chronic urethritis or inflammation of the urethra.  In my case I have had extensive studies done which have found no infection, but have found microscopic bits of tissue exhibiting an ongoing inflammatory process in the urinary tract.  - George

chiguy

I have done some preliminary searching about the link between propecia and Peyronie's. A lot of younger members seem to have taken propecia at some point and then developed the disease. I myself have taken propecia for 6 years. I googled "propecia peyronie's" and some stuff showed up. A lot of people are convinced that propecia may assist in the development of Peyronie's.

I will ask the doctor about this when I go see him to gauge his response. Sometimes propecia can cause erectile dysfunction (according to the FDA), but there is no mention of Peyronie's on their website.

GaryNC

Have you had your testosterone level checked?  I am 53 now and have been using the rub on your stomach supplemnt for years now.  Do you still have any hair on your legs?  My leg hair grew back when my hormone level was increased

ComeBacKid

One thing we are noticing on this forum is there seems to be some kind of a link between lack of erections and peyronies.  Whether its men who had prostate surgery to remove cancer, or bladder surgery to remove cancer, and didn't get any erections, then ended up with peyronies disease.  Anything that causes ED or partial ED could aid in the developement of peyronies disease.

Comebackid

BentYoung

Random question,

Being a 24 year old still in college, I enjoy normal drinking for my age (weekends 4-5 drinks) - I forgot to ask Dr. Lue about alcohol's interaction with Pentox - I realize that drinking makes everything worse, but that said, does anyone know if these drugs interact or what I should look out for when drinking?

Thanks  

Skjaldborg

BentYoung,

When I had my appointment with Dr. Lue, his assistant Dr. Schindel discussed my lifestyle habits including my alcohol intake. I have about 7-8 drinks per week (spread out over the week), an amount which Dr. Schindel found completely acceptable given my age and fitness. He did not mention any interactions with Pentox and in my own research I have found nothing mentioning alcohol interactions with pentox. Nonetheless, 4-5 drinks, and let's be honest, that number is probably higher, it was for me when I was in college :) , is a lot of alcohol at once. Cutting down wouldn't be a bad idea and maybe limiting the drinking weekends to 1-2 weekends per month is a good way to start. It's ok to drink responsibly and blow off steam every once in awhile, but make sure you "earn" you drinks by eating right and exercising the rest of the time.

The only drug I can find listed as dangerous with pentox is sodium thiopental, a drug used as a general anesthetic. If you will be having any surgery (including dental or oral surgery), let them know if you are using pentox. I don't know if sodium thiopental is used commonly in the US, but it is listed as an essential drug for the World Health Organization so be mindful of that if you receive medical care while living or traveling in a country other than the United States.

-Skjald

ComeBacKid

The last time I was on pentox I had heavy alchol intake for 9 days straight  while on pentox, I was at a business training with a bunch of hooligans, did it kill me? No , it won't hurt you as far as I know.  Is alcohol good for peyronies?  Not at all.  I don't drink at all really anymore, maybe for special holidays I'll have some wine.  Heavly alcohol use can lead to liver fibrosis, and I noticed my penis worsened at points in my life when I had heavy alcohol intake.  I would avoid it all costs if it were me.  If you do choose to drink, at the end of the night when your "sobering" up you could drink a few glasses of water to help soften the dehydration blow, 3-4 8oz glasses of water.

Comebackid

I_H8_PD

Hi all,

This is my first post

I am 22 years old, and i have been living with peyronies for about 7-8 years. The progression of the disease has gotton quite bad. I have been reading up and i have found that i have a rare case where the penis is angled directly downwards. and very sharply. maybe about 80 degrees.

it looks very similar to this photo i found:

beverlyhillssurgical.com/images/photo_curve_down.jpg

It has been a slow progression towards this state. and i believe it has remained unchanged since i was about 19 or 20 years old. I have NO PAIN at all when i have an erection but it reaches that curved down state.

I seriously dont know what to do, i realize i have a severe case. But will Xiaflex work on a case this severe or will i have to have surgery? I dont know what to do...

I live in Sydney, Australia

its honestly not fair that i have this disease at this age.....Sad. I hate my life.

cowboyfood

I had not visited this website in at least six months, but Dr. Gelbard has acknowledged and suggested many of the treatments (and timing of them) that are strongly endorsed on our forum over this time period (VED - even gives a plug for the Augusta Med. Device, Pentox, Viagra-like med).

http://www.peyronies.org/pages/forum.htm

CF
Currently:  L-Arginine (2g), Vit D3)

skunkworks

Quote from: I_H8_PD on November 25, 2009, 04:43:29 AM
I am 22 years old, and i have been living with peyronies for about 7-8 years. The progression of the disease has gotton quite bad. I have been reading up and i have found that i have a rare case where the penis is angled directly downwards. and very sharply. maybe about 80 degrees.

it looks very similar to this photo i found:

beverlyhillssurgical.com/images/photo_curve_down.jpg

It has been a slow progression towards this state. and i believe it has remained unchanged since i was about 19 or 20 years old. I have NO PAIN at all when i have an erection but it reaches that curved down state.

I seriously dont know what to do, i realize i have a severe case. But will Xiaflex work on a case this severe or will i have to have surgery? I dont know what to do...

I live in Sydney, Australia

its honestly not fair that i have this disease at this age.....Sad. I hate my life.

You have had Peyronie's since 14? Was it caused by an injury that you know of?

Have you been diagnosed by a doctor who is familiar with Peyronie's?

Is your erection functional? ie/ can you achieve penetration?
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

chiguy

Quote from: I_H8_PD on November 25, 2009, 04:43:29 AM
Hi all,

This is my first post

I am 22 years old, and i have been living with peyronies for about 7-8 years. The progression of the disease has gotton quite bad. I have been reading up and i have found that i have a rare case where the penis is angled directly downwards. and very sharply. maybe about 80 degrees.

it looks very similar to this photo i found:

beverlyhillssurgical.com/images/photo_curve_down.jpg

It has been a slow progression towards this state. and i believe it has remained unchanged since i was about 19 or 20 years old. I have NO PAIN at all when i have an erection but it reaches that curved down state.

I seriously dont know what to do, i realize i have a severe case. But will Xiaflex work on a case this severe or will i have to have surgery? I dont know what to do...

I live in Sydney, Australia

its honestly not fair that i have this disease at this age.....Sad. I hate my life.



A good surgeon can fix this problem, but first you need to make sure you have peyronie's. If it is indeed a congenital curvature, meaning you were born with it, a surgeon can fix it by plication. Plication is a procedure by where they will make the longer side (in this case the bottom) equal to the length of the short side.

If it is indeed Peyronie's, a doctor may do excision of the plaque and grafting.

The most important thing to do now is see a urologist, get a doppler ultrasound to check for plaque, and see if it is peyronie's.

Tim468

Dear "I hate Peyronies Disease"

So do we...

The downward angulation is said to be the hardest to surgically fix. My recommendation is to see a urologist to get an opinion, but seriously consider seeing one of the "best" surgeons available. That translates, simply, into seeing a surgeon with good hands who does good work. Those who do research may be very good (and usually are) but for surgery, you need someone who has done many, many surgeries.

Please ask you urologist (if he recommends surgery) how many surgeries he has done on downward angled penises (peni?) and ask him if there are any surgeons who stand out as "best" in his mind for doing such a rarely done repair. See what he says.

Tim
52, Peyronies Disease for 30 years, upward curve and some new lesions.

nebula

Hi, I'm new here. 19 years old.

In August of this year, my girlfriend and I were messing around and she wound up masturbating me. We were lying in kind of an awkward position, and she was being somewhat aggressive. Afterward, there was some redness and slight pain but I thought nothing of it and figured it would go away in a few days.

After a few days, the redness did go down. It was still slightly sore, but nothing unbearable or anything, so I just went on with my business. I did notice something though; I was still able to get erections, but they didn't seem as strong. AND, it didn't hurt, but there was definitely some sort of sensation that I hadn't experienced before.

A few weeks later, my girlfriend sees my penis and says "Why are you crooked?". This would have been about the middle of September. It's worth noting that prior to this occasion, she had never see my penis in light before because we had only been dating for a short period of time and anything we did was done in the dark. When she said this, my penis WAS bending rather to the left. And for the life of me, I couldn't remember if my penis had always looked like that. I know it seems stupid since we see the thing every day, but I just couldn't. I started thinking "Have I always been like this or is this some sort of recent development?"

So around that time I started researching some things online. Through some searches, I stumbled upon something about Peyronie's Disease, which I had never heard of before. Once I read that it can be caused by trauma to the penis, I thought back to that time of my girlfriend and I in August because that's the only "trauma" I could think of that could have occurred. I started thinking that maybe I had this.

But, I kind of just forgot about it because I had other things going on and thought maybe it wasn't such a big deal anyway. I figured, "the thing still works and, who knows, maybe I've always been like this". However, now in December, I have to say that my penis looks more curved than I can ever remember it being. In fact, it's not so much a HUGE EXTREME curve or anything (although there is a curve), but more like the thing just points or twists or tilts to the left, erect and non erect. But when it is erect, it's at about a 50 degree angle or so the left and won't stand up..sticks out.

As I mentioned, I couldn't totally remember what it looked like before, and I don't think I've ever been totally straight down there, but I'm pretty sure it had never been as extreme as this. Plus, if I use the tip of my finger, I can feel a a sort of "scaley" type formation on the left side, which isn't present on the right (or at least nowhere as bad). Not sure if this is just a normal part of the penis or not, but it still alarms me.

So, I figured it might be time to get it checked out since it's been about 4 months since the incident. But I'm not sure what I should do. What do I tell them when making the appointment? Do I need a referral from my primary doctor to visit the urologist? Will they be able to tell me for sure if I have it in one visit? Being fairly young, I'm just not fully familiar with how this kind of stuff works. And it's not like this is something I want to talk with my family about, so I feel comfortable posting here.

I just need some piece of mind. And I'd like to think that if it IS Peyronie's, something can be done to help me straighten it out. I see a lot of people on here seek treatment for pain, but I'm not really experiencing any pain. I just want to be straighter down there because I think there has been a change. Sorry if there has been a little too much information in here.  :-\

Thanks

BentYoung

Question - Have any of you seen vein or vascular changes since Peyronies Disease. I have the band form of scarring that causes hourglass/upwards curve. I noticed that my dorsal vein has been getting progressively bigger since this began, which makes sense because scarring intersects the vein along the top and causes restriction. Is it possible for this vein to rupture due to the pathology of the scarring placing pressure on it? Has anyone heard of vein rupturing due to Peyronies Disease? If so, what should I look for?  

chiguy

Nebula,

Depending on where you are located, you may be able to make an appointment with a urologist. Most of us on the forum are from the United States. Depending on your insurance carrier, you may be able to make an appointment immediately or you may need a referral. If you are in Great Britain or Canada, I think you will need to go to your general practitioner first for a referral to a urologist.

This disease is best treated early, assuming you have it. You may have a congenital curvature, which has been present since birth, but becomes noticeable during puberty. This is fixed with a plication surgery, where they shorten the longer side to match the shorter side.

If you have peyronie's, most doctors will start you with natural vitamin E supplements. I take 4 400mg pills a day. Most forum members take far less. There are several options in treating peyronie's, but it is important you confirm you have the disease first. There is also the possibility of scar tissue unrelated to peyronie's.

The most important thing is to make the appointment with a urologist immediately if you can. What geographic area do you live? A lot of forum members know the best doctors to treat peyronie's in both the US and Great Britain. We can provide some recommendation. Also, describe your insurance carrier.

ohno

I'm pretty new to this forum and there are many people on here with a lot more experience than I... but I think you should read about pentox (enter it into the search - find Dr. Lue's study) and take that with you to the urologist. Many doctors don't have a clue about this condition and if it is confirmed you will want to immediately start on pentox (unless there is some medical condition which might prohibit its use). Dr. Mulhall indicated to me that had I started on pentox during the early stages it would have corrected the condition. Hopefully you don't have peyronie's. Good luck.

bobshouse

have had for a little over a year now , nothing seems to work even $600 medication prescribed by my Doctor .......

George999

Quote from: bobshouse on December 11, 2009, 05:57:21 PM
have had for a little over a year now , nothing seems to work even $600 medication prescribed by my Doctor .......

Bob, are you referring to Potaba?  - George

exoduS

Hello all. i am very new to site and has been searching for peyronie for few days.

i injured my penis while doing penis enlargement excersizes back in June 2009. i had varicosed veins in my penis and they were so painful and disturbing. i have been taking vitamin e, detralex(vein pill), and recently started a multivitamin supply.

i didnt have any deformity of penis till 2 weeks ago. i recently realised while it is getting erect i see that hourglass shape then it turns to normal. also when it is in flaccid state it is so hard and like something is squezing it in the middle and gives great discomfort.

i feel it is very hard in the root of penis. i was in several urologists and they never told me i have peynorie but i also didnt have anything hard in my penis till last weeks. it is something like surrounding root of my penis.

i am thinking maybe the reason for this is the supplement i took and there are many vitamins, iron , calcium and others. so maybe some ingredients made it hard??

already i have been taking vitamin e for 2 months and i just started using vitamin e cream, it feels better when it is flaccid now. can u give me some recommendations about my situation? i feel it is very hard in the root of penis.

i am only 25 years old and feel very down..


chiguy

Exodus,

Sorry to hear you may be affected by this condition. You need to go to a male sexual function specialist, preferably one that specializes in peyronies. Not sure which country or state you are in, but let us know so maybe we can find a good one for you.

Read the board and all of the forums, and they should provide more in depth information. In the meantime, continue with the vitamin E, although many say it doesn't help. Monitor the situation. It sounds like you could be in the early stages.

The first 12 months are the active phase, where the condition progresses. Certain medications like pentox (trental) are proven to be effective, but a urologist must prescribe them.

You can also start taking 2000 mg a day of l-arginine supplements, which can be purchased over the counter at any drug store.

To determine if you have peyronie's, you should get a penile doppler ultrasound. There is plenty of information on that on this board.

Let us know if you have further questions.

exoduS

Hello. i had a penile doppler ultrasound 2-3 months ago and it was clear. but something strange happened. when they injected me the solution i didnt get any erections but the guy still checked my penis with the prob and in his report it was written i had enough erections and normal blood flow. also the images were showing the blood flow rate in the report.

i have met a site that there are people claiming they got rid of this situation or at least correct some of it. but dont know if it is real or the guy is trying to sell some products or videos. there people were claiming that they had a lot correction in 1-2 months with some supplements also vitamin e.

peyronies-disease-help. com/

and here is a site that i found recently and it is a good resource to find information about sex and penis.

cure-erectile-dysfunction. org/

his reply to my question about peynorie was to make hot wraps, vitamin e cream, using some multivitamins and it will be ok in some months.

i am trying to check the forums but i dont see anyone who really got over this problem.

i can say vitamin e cream helped my feeling for flaccid state as it doesnt feel so hard and i dont feel the band around but still when it is getting erect the band is visible and when it is erect middle is more flat.

i will report you my improvements and check your forum more..

thanks a lot

chiguy

It's possible that the condition has progressed since you got the ultrasound, especially if you were still within the active phase of the disease. A lot of us question the effectiveness of some of the treatments on those websites, but this forum is by far the best source of information. Dr. Therazy's institute claims to have a high success rate, but most mainstream doctors do not utilize his treatments, so you must use them at your own risk if you choose.