PEYRONIE’S Progression & timing

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zhukov

I am a 30 year old male and about 4 to 5 years ago I noticed I had a hard flat spot under top flesh of  my penis (about 1 cm long and .5 cm wide) so I went to the urologist and he told me it was just a lesion, probably from a trauma during rough sex, but he told me not to worry and to just take Vitamin E for about 3 months which I did. However, just last week I went for a regular check up with a different urologist and he diagnosed me with Peyronie's Disease and told me that the hard spot was a plaque. He only prescribed me Colchiquin and Diprosan but other than that he just said I should wait and see what happens since I had had the same plaque with no changes for the last 5 years with no consequences. My sex life has not been affected at all by this plaque and I have never had any pain or noticeable bent but I am still worried. I would like to know what are the chances that the plaque will stay the same size as it has for the last four years or if there is a chance it will expand and create future problems? and also if it is wise to just 'wait and see' as my doctor suggested? Is there a chance the plaque will eventually disappear? and are there any side effects from the medication he prescribed?

newguy

Quote from: zhukov on June 19, 2010, 12:43:54 PM
I am a 30 year old male and about 4 to 5 years ago I noticed I had a hard flat spot under top flesh of  my penis (about 1 cm long and .5 cm wide) so I went to the urologist and he told me it was just a lesion, probably from a trauma during rough sex, but he told me not to worry and to just take Vitamin E for about 3 months which I did. However, just last week I went for a regular check up with a different urologist and he diagnosed me with Peyronie's Disease and told me that the hard spot was a plaque. He only prescribed me Colchiquin and Diprosan but other than that he just said I should wait and see what happens since I had had the same plaque with no changes for the last 5 years with no consequences. My sex life has not been affected at all by this plaque and I have never had any pain or noticeable bent but I am still worried. I would like to know what are the chances that the plaque will stay the same size as it has for the last four years or if there is a chance it will expand and create future problems? and also if it is wise to just 'wait and see' as my doctor suggested? Is there a chance the plaque will eventually disappear? and are there any side effects from the medication he prescribed?

Personally, I would say that if the area has been like this for such a long time with no curvature or pain, then there isn't much to worry about at this point. Perhaps past injuries/abnormalities can point towards susceptibility to future problems but we're talking about five years here, so whatever is present doesn't appear to be casusing you problems and is likely stable.  With peyronie's disease the "wait and see" approach is usually ill judged, but in your case it perhaps is the correct advice. If you ever experience pain, or a change in curvature or the hard area, then you're in a very good position to act immediately (by taking pentoxifylline and using traction or vacuum therapy). My hunch is that there is nothing to worry about. That's just my take on it though. I'm sure that others will chip in too...


LWillisjr

I agree with Newguy. What seems to be the critical time to treat Peyronies is when it is what is called active. This is generally the first 18 months of the scar appearing. Unfortunately many urologists recommend a wait and see during this period, but those of us on the forum recommend treatment during this period as quickly as possible.

As state in your case you are well beyond this with no problems at this point. Just monitor for any changes and don't worry about. Avoiding rough sex in the future might also be advised as this can definitely be an initial trigger for scarring/Peyronies to occur.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

zhukov

I would like to know if anyone has any experience with injections of Diprospan? I have had Peyronies for 5 years and it has been stable all this time, no pain or complications at all, sex life is good but I have had a plaque for all this time and I recently changed urologist and he suggested I could try this medication. Does anyone know of any side effects? is it even worth trying this is my condition has been stable for so long? is there a chance it could trigger the creation of plaques again? The doctor also recommended taking Colchicine orally so same questions apply for this medication.

zhukov

Thanks for your replies, they are reassuring. And how about the medications that the doctor recommended Colchicine (oral) and Diprospan (injection but not on the penis), do you think I should still take them after all this years? will it help at all or could it make things worse?
Thanks again!

Zhukov

LWillisjr

You will get differing opinions on this. Many along with myself believe that once the Peyronies Disease stabilizes that there is little you can do with meds. If you Peyronies Disease causes pain however, several here continue taking Pentox or other meds to help with the pain. If you Peyronies Disease is causing other issues, then you will need to investigate other paths like traction, VED, or surgery.

If your Peyronies Disease is not causing any problems.... no pain, no problems with intercourse...  then I would consider yourself lucky and focus so much on your Peyronies Disease.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

zariche

I'll be 22 next month, but I believe I have developed Peyronie disease through injury.

Does catching it early give any advantage or is it once you get it you really lose control of where you are heading?  I haven't been to the doctor yet, but over the past few weeks I've developed a small lump on the left side mid-shaft and a decent size indention mid-shaft on the right.  I really don't have any pain or bend other than right under the head on the right side where I can feel a hard piece of tissue and during erection the head of my penis twists a bit, although it sorta feels like my entire penis has twisted a bit, but I could be wrong.  It takes a bit longer for me to get an erection as it gets half way erect and stales, but I can stimulate it the rest of the way and it can get pretty rigid after a minute or so.  I've have noticed a bit of reduced girth, but my length seems ok so far, at least I haven't noticed a huge different.  

Anyway I bought these supplements

Acetyl L-Carnitine - 750 MG per day
dl-alpha E - 400-600 I.U. per day
Omega-3 Fish Oil 1200 MG per day
One a Day Energy - 1 per day

I'm not sure if I should be taking more and of what.  I've read up on the forums on other supplements, but I'm not sure if or what else I should be taking.

Another question I have is if I visit my GP and he feels the plaque can I have him prescribe pentox or do I have to visit a Urologist.  If I need to visit a Urologist is there a good urologist In or around Central Texas that will know about Peyronie disease and not just give me the "wait and see" treatment that it seems a lot of people get.

This is a pretty depressing development as I just started seeing this girl and this has seriously put a lot of strain on my emotions, lol I'm also a virgin so compound that upon the anxiety train.




ComeBacKid

Go to the PDS Resource Library and print out the Dr. Lue studies on pentox, study it so you know the results, and take it to your urologist and lead on him for pentox, that will help you if you get on it early.  I wouldn't waste any time screwing around with other doctors, go to a urologist, tell him you'd like to try pentox for at least six months, but try to get a refill when that runs out, you want to be on it longer, it seems to help more than.  If I had no one to get pentox from and I only saw modest results, knowing what I now know, I'd exaggerate the results to get another six months of it.  Its sad you have to do that, but I really believe it takes longer than 6 months, its a very slow process as it blocks the autoimmune system, replacing cell by cell.  A lot of doctors won't listen or will BS you cause they don't know enough about the disease.  If I could of gotten on it really early I'm sure I'd be in great shape right about now.  Its challenging when doctors don't listen, or won't listen to you.  Print the studies youll probably need them!  Seeing the impressive results from this drug,but recgonizing that some have seen no results, I say get on it ASAP!

Comebackid

zariche

Thanks for the reply and tip, I hope I don't have to fight too much.

On the subjects of supplements I am confused on the differences between Acetyl L-Carintine, L-Carintine and L-Arginine.

BrooksBro

They are some of the 21-22 amino acids.  Proteinogenic amino acids are found in proteins.  The body can make half of these, while the other half (essential amino acids) must be consumed in the diet.   Arginine is one of the essential (and proteinogenic) amino acids.  Non-proteinogenic amino acids are not found in proteins.  Carnitine is a non-proteinogenic amino acid.  The "acetyl" part means it is a chemical compound, rather than the pure form.  We know aspirin is acetylsalicylic acid.  Aspirin is the synthesized version of the salicylic acid that naturally occurs in willow tree bark.

L-arginine and L-carnitine are found inside cells.  Acetyl L-arginine and Acetyl L-carnitine are dietary supplements.



Quote from: zariche on July 15, 2010, 02:37:28 AM
On the subjects of supplements I am confused on the differences between Acetyl L-Carintine, L-Carintine and L-Arginine.

zariche

Intresting, so should I be taking all 4 kinds?  I saw regular l-Arginine/Carnitine at the store and wasn't sure which to get.  Since you say half of them can be made by the body while others must be consumed I assume it's best to take arginine too.

As for erections, the consensus is that it's good to have strong regular erections.  Though is it more helpful or harmful to tighten up and  force as much blood into the erection as possible or is it better to just relax as much as possible but in result don't get as rigid as possible.

Edit:

On a side note after ejaculation is it normal for the penis to engorge at the base first and then work it's way up and after ejaculation is it normal for the at midshaft to the tip to lose blood first?  

Here is an example of what I mean, hopefully it demonstrates well enough.

||  ->   /\   ->   |  |  ->  /\  ->  ||

|| = flaccid
/\ = engorged at base first then slowly expands to tip
|  | = fully engorged, but of course it's a bit less girth at the tip end which is natural for most I believe (although I have lost a bit of girth towards the tip which is why I am asking about the enogrement)

Honestly I can't remember how it was before the injury, but it seems a bit abnormal since the /\ effect seems to happen right after the lump on the left and dent on the right.  

LWillisjr

zariche,
Care to share any details on what type injury you suffered? It may help others here in identifying their own symptoms.

Also, I follow exactly what you are describing with your graphics. It may help you to understand that there is a tough sheath of tissue called the Tunica that surrounds your penis. You skin covers this and it surrounds all the internal parts of your penis. The tunica will expand to a point and then doesn't expand anymore. And generally will expand uniformly. In your case, your damage may be in the part of the tunica from mid-shaft to the tip. It still works but may not be as elastic as it was. So as blood flows in to create an erection, the lower part fills and expands first now. And the mid to tip section may be less elastic so it is slower or lags now. But enough blood/pressure does force it to is maximum stretch. When your erection starts to go down, this section is going to try to go down and return to it's flacid state first. Make sense?

Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

zariche

Honestly I'm not fully sure.

I was stupid and used a pump 2 years ago and had problem getting it off, that caused some pain and discomfort for some time.  Then recently I was trying Jeleqing for a few days and really I didn't feel any problem with doing it, but after a few days I noticed a sudden change in shape.  

Although close to a month ago I was doing sit ups and felt a pop or something down close to the pelvic bone.  I had hard time getting erections after that.  Other health issues is that I have irritated/pain in pelvic muscles for the past few years.  I also have a pinched nerve between my L5 and S1 vertebrae.

On related to graph I showed sometimes it's better and sometimes it's worse, is this due to inflammation or what?

zariche

This is probably one of my biggest concerns right now; how gentle do I have to be with Peyronies Disease?  By this I mean how rough is too rough before it can worsen the condition?  Can a tight grip or really anything related to any form of sexual act cause problems when in the acute or later stage.  lol I don't plan to do anything rough with it, but if there is some dangers I would like to know; obviously I don't want to be afraid regular of sex or masturbation if I don't have to be.

Old Man

zariche:

Well now, how rough is too rough! That is a question that only you can answer. Anything you do to your penis that causes any discomfort or pain would be considered too rough. There are many forms of manipulation that guys do with their penises that could be considered too rough. Rough or excessive masturbation that causes pain is the most common one being reported around the world. Woman on top sexual position might come in second to rough masturbation for the cause.

Other "unnatural" sex positions can and will cause micro trauma to ones penis leading to possible Peyronies Disease. So, one has to use their own body to determine what may or may not cause trauma to their most prized possession. So, analyze what your sexual activity is and then decide if it causes pain or discomfort, and if it does, then it would be considered excessive.

The above carries my usual caveat which is, it is my own personal experience of that of others confiding in me with their problems.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

zariche

Alright thanks, I just wanted to make sure I didn't have to feel like I needed to protect it like it was a house of cards and any slight touch could destroy it.  Just didn't want it to kill my psyche oo regular unpainful acts.      What is the danger of the girl on top besides slipping and crushing you, possible bending or something?

Old Man

zariche:

The problem with the woman/girl on top is this:  if you move one way and she moves another way at the same time and your penis slips out and she comes down on it real hard, it can actually break the tunica or the erectile tissue. If this happens, Peyronies Disease is usually the result of this accidental bending or crushing the shaft. If not corrected in some way, plaque will normally develop after a certain period of time. This time limit varies with the individual as each person is totally different than any other.

So, if you use this sexual position, it is real important that you both are on the same page when engaged in sexual activity. One slip out can do permanent damage that is real serious.

Regards, Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

zariche

You know I am curious if Vitamin E has possibly been the culprit my Peyronies Disease, or at least exacerbating it.  I was reading about how Vitamin K deficiency can be made much worse by taking Vitamin E.  My only known intake of Vitamin K is through a multi-vitamin that only gives 25mcg (31% of the daily value) but also gives 22.5 IU of Vitamin E (75% daily value) according to the label.  That would make a 44% offset from the beginning and then adding in anywhere from 4-600 IU (1333-2000% daily value of) of vitamin E that would make up to over 2000% offset in daily value consumption.  Obviously this math is most likely insanely wrong in terms of connection between the two, but it should express what I'm trying to get across in terms of lopsided intake.

The reason I think it could be the Vitamin E is because I started taking Vitamin E a couple of weeks before my flare up in hopes that it would help increase circulation to my pinched nerve, and then obviously once I saw the recent signs of Peyronies Disease I increased my dosage of E due to it being one of the main supplements suggested for Peyronies Disease.  

So could low Vitamin K possibly cause inflammation in tissue or at least the calcification, as right now it sorta feels as like my entire body is a bit inflamed and not just my penis, though that just could be due to my pinched nerve causing irritation.  

I tried finding some Vitamin K at the store but didn't see any. Since Vitamin E really has shown little in being affective I am going to get off of it for a few weeks to see what happens.  Although it could just be a fools hope, especially since I have no idea if this could even possibly be related due to my ignorance of vitamin's, but it's worth a shot I guess.  I'll still keep taking my Multi-vitamin since the dosage of Vitamin E is pretty minuscule compared to what I was taking.

Oh and I also noticed some blood in my bowel movement today, I'm not sure if that could be connected to anything.

zariche

Just wanted to report how well taking the supplements have helped with my blood flow.  Since injuring my penis a few years ago with the pump my head would rarely engorge, also the underside engorgement was pretty weak.  Now I am getting pretty good blood flow, it's not perfect, but it's much better than before.  I haven't noticed a huge improvement in nocturnal erections, or at least I haven't woken up with many.  Maybe that will come with more time on the pills.  

On the side of Peyronies Disease I haven't noticed much negative changes recently so hopefully it will stay that way till I get to go to the Urologist in 1 week and hopefully get some Pentox.  

Here's my regimen as of today:
Acetyl L-Carnitine - 750 MG per day
dl-alpha E - 400-600 I.U. per day - I removed the Vitamin E till I can get some Vitamin K, but I may take 200 I.U. ever other day to stay on it.
Omega-3 Fish Oil 1200 MG per day
l-Arginine - 1500-2000 MG per day
One a Day Energy - 1 per day

newguy

zariche - That's great news. Pycnogenol and L-arginine are also a good combination together. You could always add those to what you already take and see if you experience further improvement.

zariche

Just read up on pycnogenol, sounds like an interesting thing to try.  Is there any side effects like vitamin e surpressing vitamin k?  Anyway if I start taking it what is your recommended dosage?

zariche

It seems that hard plaque like thing under the right side of my head is gone, I'm not sure what that means though.  I was having some annoying discomfort/pain at the area where the hard plaque was but that discomfort is gone.  Is it strange to see the plaque disappear like that so fast?  I haven't noticed any positive change in the dent or bump on either side though in mid shaft and the rotation is still there.

BrooksBro

I take 50 mg pycnogenol along with 2,000 mg L-Arginine nightly.  There was a study on the combination of 1.7 gram Arginine + 40 mg pycnogenol x 2, funded by a company selling these two products as a single tablet combination.

Quote from: zariche on July 21, 2010, 02:22:36 AM
Just read up on pycnogenol, sounds like an interesting thing to try.  Is there any side effects like vitamin e surpressing vitamin k?  Anyway if I start taking it what is your recommended dosage?


zariche

Interesting thanks.  I've been taking 1500-2000 MG of L-Arginine through out the day, would it be better to just take the 2000 all at once before bed time to help with night time erections?

BrooksBro

My urologist - Larry Lipshultz - said all at once, before bed, to help with night time erections.

Quote from: zariche on July 24, 2010, 06:04:10 PM
Interesting thanks.  I've been taking 1500-2000 MG of L-Arginine through out the day, would it be better to just take the 2000 all at once before bed time to help with night time erections?

zariche

Ok I am having some very intense strange pain in my lower abdomen and in the area of my pubic bone.  My testicles also seem swollen along with an irritated looking red scrotum and they (the testicles) sorta ache when touched.  Not sure whats going on.  Is it possible I have a pinched blood vessel or something in my abdomen.

From what I've read it could either be a symptom of CPPS or varicocele.  It's most likely Varicoceles I guess since the increase bloodflow from the supplements.

Lennyman

Zariche,   I believe you have prostatitis.  the inflamation is actually from your perenium area. I would limit ejaculation to 1 time a week to let the prostate heal. Take a vitamin pack from gnc daily. Hope this helps.  Lennyman
Lenny was here  :)

zariche

I did have my urine checked not too long ago and it was clean of bacteria, though I believe I do have the non bacterial form.

Would doing as you say help the symptoms of the non bacteria form?

Lennyman

yes I believe it would and read my posts w the cortisone  cream ok
Lenny was here  :)

zariche

I'll look into cortisone.

It seems I do have some form of cyst right above my right testicle, it's pretty large, a bit larger than a pea, and seems to be on the spermatic cord or whatever its called.  I won't be able to get into the doctor for another couple of weeks though since they are booked, gonna have to keep calling to see if they got any cancellations.  It's pretty strange that all of these incidents are running together at once, although I guess all are related to inflammation.

lol I'd rather have two broken legs and arms right now than deal with something as mysterious as Peyronies Disease and whatever is going on with my testicles.

Edit:

lol I know I post and ask a lot of questions, but I'm still trying to get a grip on the supplements, disease and other subjects.

Anyway I just read up on some erectile dysfunction and I am curious if I am taking too many blood thinners and vitamin K suppressants, especially since I don't get much vitamin K in my diet.  It seems since I've started taking an increasing amount of supplements that have the side effect as blood thinners I've had increasing problems with the time it takes to get an erection.

Overall I just want to figure out if taking these could be the reason for my prolonged time for getting an erection and making it harder to maintain.  Though it could just be anxiety or the scar tissue/inflammation I want to be sure I am not taking too many blood thinners as I'm sure that cant be good for my health much less my erections.  

I assume if I was older and I had bad cholesterol problems it would be beneficial for erections, but since I am 22 could it adversely effect me?  

Vitamin E, Ginko Biloba, Fish Oil, L-Arginine (lowers blood pressure)

I think for the next few weeks I'm going to stop everything but L-Arginine, Acetyl L-Carintine and my regular One a day vitamins to see what happens, that is unless someone comes in and tells me I am wrong which is very likely since I'm still pretty ignorant.

zariche

I am very curious about my lumps.  They are quite noticeable while flaccid and when I tried palpating them to see if I could feel hard tissue the lump seems to increase in size or even double.  Is this something that happens to everyone?  I really cant seem to think of a reason why it would do this other than it increases the inflammation, but even then it seems strange that it would have such quick increased swelling.

On a side note it seems like I have either a new hard nodule right below the head on top, but it seems it also could be a thrombosed vein though I am not sure.  It has a small area that has a blue color to it as if there is a vein there but with the circumcision scar its a bit hard to see.  It gets harder while erect but can be felt pretty tough while flaccid also.  

Anyway wanted to report some significant progress with nocturnal erections when I assume is to taking Acetyl L-Carintine and L-Arginine right before going to bed.  I've had some decent erections upon awaking and they are of decent quality.  

newguy

Some of the symptoms you've mentioned in this thread don't sound peyronie's related. Perhpas it could be that you have another condition altogether.... or that you do have peyronie's but have another issue going on too. The testicle cysts, abdominal pain and what not, these really sound like something you should get checked out. Hopefully when you go to your doctors appointment, you'll be able to find out more.

zariche

Yeah I honestly have too many things going on to really point in the direction of one thing.  Anyway I'll report back after I see the urologist on the 27th.  

lespleen

I got peyronie's when i was 22 as well. I was also seeing someone. I told my generalist about pentox and he was understanding. Toxicity levels  and associated side effects are minimal . You're basically asking him/ her  for the right to produce  expensive urine.Print out the Iranian and other studies on this site if the need should arise to present your GP with something more concrete . Otherwise you'll probably have more luck with a GP given their systemic understanding of the body. Urologists tend to be very brute and " mechanically" i.e. surgically minded about things.   you should probably add L-arginine to the list( perhaps it was already indicated?). Don't let this thing get to you. I let it get to me. You can get through this. When i was first diagnosed nothing was made available or could be found aside from vitamin E and " wait and see". It was a nightmare.  

zariche

Thanks for the post.  I know the progression is different for everyone, but I would be interested in hearing about your first symptoms and where it went from there since you were relatively the same age when you first encountered it.  

Right now for me it seems like my symptoms are getting gradually worse every week.  Right now I have multiple lesions on the right side and one on the left.  Overall it hasn't produced a bend (maybe a very slight one to the right), but it has made it where past the lesions at mid point of the shaft the shaft does not engorge correctly until some time after the base has fully engorged and even then it doesn't seem to expand as much as it did even a month ago.

Right now when I feel the lesions they don't feel hard, but you can feel the bulge if you apply soft to medium pressure.  If I use hard pressure to feel the deep tissue it feels like theres a divot like this ---v--- (the v being where the bulge is but how it feels when feeling the deep tissue).  

Overall it looks and feels like a mess with it all lumpy and weird.  

zariche

Just wanted to drop in and give some positive news to the forums.  It's not exactly positive news in that the shape, but I have noticed a nice increase in the sensation that I lost with due to my initial injury over 2 years ago.  I've had little to no sensation in my shaft and it was rather pale and cold most of the time; it felt rather lifeless and needed a LOT of stimulation to feel much.  Though I took a shower today and it felt really strange as the water was running down, after trying to figure out what it was I realized that I had gained some decent amount of feeling in the shaft; I don't have the full sensation but I can actually feel light touch to the skin again.  Over the past few days I've noticed a more full of life with a richer color and a lot more warm to the touch too.  I think this has a lot to due with the increased bloodflow because as I stated before the head of my penis would rarely get engorged without me straining like crazy to trap it in there, now I can stay relaxed and for most of the time it will stay at least half way engorged compared to none that it was before.  Overall I still have the dents, twist, and bottlenecking, but this is at least some promising progress.  lol I just hope I am not jinxing myself and it's only a temporary positive.

Starflower

I'm new to the forum so probably irritatingly packed full of questions.....sorry....     My husband was just diagnosed and been advised not to have sex or it will worsen the condition.  Erections also cause him a lot of pain.  Is his urologists advice correct?  It makes sense I guess that time and no erections might help heal any injury while erections will pull at the injury/scar and make it worse.  

This forum seems to advise differently though - a lot of people recommend the "use it or lose it" approach but is that when the Peyronie's has been diagnosed long after it began?  What if the injury was recent?  Is there a way to tell?

BrooksBro

Pain is a natural indicator that something is not correct.  I feel fortunate that my initial pain on erection was reduced to a very tolerable level with 30 days of taking a prescription anti-inflammatory medicine (I forgot which one).  Other men are not so fortunate, and have pain for much longer than I experienced.  Everyone is different.  Approaching two years after onset, I still have some discomfort, which, for me, is well below the level of what I would call pain.  Initially, yes, it most erections adequate for sex were very painful.  Oral anti-inflammatory for 30-days reduced that.  I think most men, but not all, have a large decrease in pain within the first 6-12 months.

Traction helped to restore length and girth, to the point my wife commented on the improvement.  There are treatment therapies which have proven to improve conditions in many men.  Some men fail to respond to less invasive treatments.  I think it is a reasonable goal to restore function sufficiently that intercourse may occur.  DO NOT ACCEPT "take vitamin E and come back when you want to to discuss surgery!"

Quote from: Starflower on August 16, 2010, 04:40:16 AM
I'm new to the forum so probably irritatingly packed full of questions.....sorry....     My husband was just diagnosed and been advised not to have sex or it will worsen the condition.  Erections also cause him a lot of pain.  Is his urologists advice correct?  It makes sense I guess that time and no erections might help heal any injury while erections will pull at the injury/scar and make it worse.  

This forum seems to advise differently though - a lot of people recommend the "use it or lose it" approach but is that when the Peyronie's has been diagnosed long after it began?  What if the injury was recent?  Is there a way to tell?

Skjaldborg

Quote from: Starflower on August 16, 2010, 04:40:16 AM
Erections also cause him a lot of pain.  Is his urologists advice correct?  It makes sense I guess that time and no erections might help heal any injury while erections will pull at the injury/scar and make it worse.  


At age 30 I was diagnosed with this disease due to an injury during sex with the wife. I experienced significant pain during erection for the first several months. At the behest of this forum, I asked my urologist for a prescription of pentoxifylline. My pain started to go away shortly (a few months) while taking this medication. I suggest getting your husband on this medication as soon as you can. It's covered by most insurance and if your insurance doesn't cover it, it's very cheap.

Also, the consensus here (and of some prominent urologists as well) is that erections are a good thing because blood flow promotes healing and overall good penile health. For me, erectile pain, even at its worst, went away after a few minutes of arousal and then it was OK. It's probably a good idea to refrain from "reverse cowgirl" or other girl on top positions that could bend the penis during sex. Use lots of lubrication if you engage in any sexual activity.

The pain will probably go away but the psychological aspects of this disease are devastating. Seeking counseling, either couples or individual therapy, might be a good idea. It was very helpful for me.

best of luck,

Skjald

LWillisjr

Quote from: Starflower on August 16, 2010, 04:40:16 AM
......... erections will pull at the injury/scar and make it worse.  

This forum seems to advise differently though - a lot of people recommend the "use it or lose it" approach but is that when the Peyronie's has been diagnosed long after it began?  What if the injury was recent?  Is there a way to tell?

Starflower,
My doctor is pretty well known for Peyronies Disease treatment, and his advice is to stretch the scar tissue. It is the scarring the prevents the tunica from expanding in that area and causing a curve. I think you will find the advice of many on this forum supports that of some of our doctors that you should try to aggressively treat Peyronies Disease and that is best done by trying to break up or stretch the scar tissue. Either through the use of a VED or by using a traction device.

There are meds that can help address the pain. Many men experience pain at first but it seems to go away for some after a period of time.

Les
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

zariche

Well I just got back from the urologist.  He told me that he didn't feel any plaque (although he didn't check too much), but did notice the puffed up area's on my flaccid penis.  He did know of Peyronies, but said someone my age is less likely to get it which I already knew.  He basically told me to come back or go to my GP if I noticed any major curvature, I do have the twist, but I agree with him that it may have been there and I just haven't noticed till now with the other issues.  Overall I'm not exactly satisfied since I know for a fact that I am having a lot of strange issues and I didn't get any answers so I'm gonna try to get another opinion.

alsofilm

Yeah I honestly have too many things going on to really point in the direction of one thing.  Anyway I'll report back after I see the urologist on the 27th.    

soronic

Hi all,
This is my first post here, although I've spoken to some of you privately. At some point, I'll post my whole story, but right now I want to try to get a consensus, especially from some long-time sufferers.

About six months ago, I was diagnosed with Peyronies Disease, even though I had been going to the doctor for penile pain for 12 months. This means that I have had this for 18 months, at the end of the acute phase by all estimations. I have a very slight hourglassing, mostly visible early in the erection, with no dysfunction. I still have pain, but it has and is continuing to fade quite a bit. My confusion comes from a few different doctors saying contradictory things:

My most recent doctor says that, given the passage of 18 months with minimal deformity, I should be fine. Some doctors agree with him.

Other doctors, and websites, say that after 18 months,  the condition actually worsens as the scar settles. Also, there is this issue of calcification.

Calcification aside, does the deformity worsen after 18 months on average, or not? Can anybody be clear?
I understand that calcification occurs after the acute stage and happens over time; is there a timeframe for when a patient can say he is "out of the woods" in regard to that?

Mostly, I just want to know if 18 months is pretty much a "safe zone" in regard to the development and progression of the basic deformity and if I have anything to worry about at this point.

Thanks.

BrooksBro

I think most of us might say your condition is now "stable."  I do not think you should expect to see it continue to become more severe, calcification aside as you said.


soronic

Thanks. It's so hard to tell with this problem.
WW.  

LWillisjr

My understanding is that after 18+ months you should be stable. Stable meaning that your condition should not worsen any. The plaque that is there causing the deformity may calcify, or may not. This imply means that your chances of stretching or resolving the plaque (scarring) on your own will become less. If the deformity/pain is tolerable then you might need to do anything further. IF you need the plaque/scar treated in some way, my understanding is that once/if it calcifies then the only way to remove it is via surgery.

Les
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

George999

Except that there is the Lue case study demonstrating that Pentoxifylline CAN dissolve calcifications.

MikeSmith0

Quote from: George999 on January 07, 2011, 11:16:02 AM
Except that there is the Lue case study demonstrating that Pentoxifylline CAN dissolve calcifications.

Was that the study of the guy who was on it for 2 years?  I'm just trying to think of which study that was... that's really good news!  I didn't realize anyone could reverse calcification.

George999

Mike, The study in question is here ->  https://www.peyroniesforum.net/index.php/topic,772.0.html

And, yes, the treatment period was 2 years.  It does demonstrate that at least in some cases, Pentoxifylline alone can resolve or at least reduce calcifications and thus does prove that with the right tools, calcifications and plaques can be reduced or even eliminated.  Its all a matter of throwing the metabolic processes that caused the problem in the first place into reverse.  I believe that means zeroing out inflammation.  Pentoxifylline helps to achieve that as does Ubiquinol.  Additionally, pro inflammatory factors like excessive visceral fat, insulin, blood sugar and factors like heavy metal poisoning need to be controlled.  IF a person can get a handle on all of those factors, I believe some pretty amazing things are possible.  But many people would rather just have surgery and get it over with.  Its a personal choice as to how to deal with health issues.

YoungOne

Hey all,

I've been blessed with Peyronies for 2 years now.  I've found the best treatment is distance running, multi-vitamins, and L-Arginine a few times a week.  This helps foster a healthy vascular system which is about all we can do.

I have a question for long term sufferers......how does the scar tissue affect the penis over the course of many years?  I can live with my curve (the hardest thing for me to deal with is the large amount of scar tissue in my member....I'm so paranoid about the what the future holds).  If it hasn't gotten worse in 2 years...can I rest assured it won't one day make a right angle?  The majority of the scar tissue is at the head and it also runs 3/4'th of the flaccid length on top.

It would mean alot to hear from someone who has had considerable scar tissue for 10, 20 years and hasn't had their penis continue to deform.