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

[RichB]

Is it normal for symptoms of peyronie's disease to fluctuate? Are there days when it is worse and days when it is better? I have days when things seem completely fine.

My undiagnosed condition right now, which could be peyronie's disease, has some odd differences in the usual prognosis of Peyronies Disease. I hurt while flaccid but when I get an erection, the pain seemingly goes away. Is this abnormal for Peyronies Disease?

[stevo]

I am 25 yrs old and I just noticed a scar-like lump on the underside of my penis (right on the penal raphe line) near the base (about an inch above my scrotum).  It is just under the skin, about 1 cm long and maybe 2 mm wide, very slightly wider on each end (like a Q-tip).  If I gently pinch the loose skin around the "scar" I can feel and manipulate the scar tissue between my fingers, so it feels like it is not attached to the penis tissue itself.  I have not noticed any pain, discomfort, curvature, or other symptoms, but I think this scar literally just formed in the past week or so, possibly due to overly strenuous masturbation one day.  Never had any problem like it before--and I will certainly be more careful in the future not to injure myself.

I opted to skip the general practitioner (don't have one I really trust at this time) and made an appointment to see a urologist.  He can't see me for two weeks though...hopefully that short delay is not a problem.  I also am going to start taking 3 400iu of Vitamin E per day since it can't hurt.

Is it possible this is an injury/trauma scar rather than a Peyronie's onset scar?  Is it likely permanent?  Also, a number of posts on this site suggest injury/trauma to be a cause of Peyronie's disease--am I at higher risk for Peyronie's now that I have this injury?  Is seeing the urologist now the right course of action or should I wait for a period of time to see if the "scar" disappears before seeking treatment?  Any other advice?  

Sorry for the flood of questions.  Chances are the doc will know best, but I am worried and wanted to get your input as well.  Thanks for the support.  I really appreciate this resource and wish you all the best.

[LWillisjr]

stevo

Is seeing the urologist now the right course of action

Yes.  See the urologist. Peyronies scarring is usually on the Tunica. You can feel it but not "move it" necessarily. But see the urologist first as it could be nothing.

Nonetheless.......    be careful how you manipulate your penis in the future.

[kenny82]

It is just under the skin, about 1 cm long and maybe 2 mm wide, very slightly wider on each end (like a Q-tip).  If I gently pinch the loose skin around the "scar" I can feel and manipulate the scar tissue between my fingers, so it feels like it is not attached to the penis tissue itself.  

I dont want to make a diagnosis, but before u have checked it out with a doctor, u should not be too worried about it. I doenst have to be peyronies as what u say likely doesnt fit Peyronies Disease. If u can move it and it feels like it superficial under the skin, that it could just be a swollen lymph vessel or a thrombosed part of a vein. just want to calm u down until u see a doc so u dont have to be all too concerned.

Bye
Kenny

[Tim468]

Stevo,

See the doc. It does not sounds like Peyronie's, and I cannot tell if what you are describing is even abnormal. So a real exam by a real doc beats us any day of the week!

The other thing already mentioned - masturbation should never lead to an injury to the penis. That is not "vigorous" or similar terms, but simply self-abuse (wait.. that's what they call regular masturbation!.. nevermind)

Seriously, do things that feel wonderful but do not cause injury. If you dodge a bullet and do not have Peyronie's, that would be great. And it would not mean (whatever it is) that you are more likely to get it. But hurting the penis is never a good thing and can lead to scarring.

Tim

[stevo]

Thank you for all the responses.  I guess there is no sense in worrying before I see the urologist.  Not much I can do til then.

I also appreceate the suggestions about thrombosed vein and lymphocele possibilities...I had not looked into those before.  I will let you know how things turn out.

[Jonny13]

Good to meet you, Emperor.  You are in a great place.  Hey, if you don't mind me asking...how would you say it has shaped your life?  I'm real curious since this is new to me, and I want to learn as much as I can, as you do.  I am curious how you feel this has affected your life...

Hope for the best, man
Jonny

Post moved from "Our Histories" since that topic is restricted to only one History posting per member with no 2 way conversation.

[Iceman]

just got back from my doctor with 6 months supply of pentox - hes great!!
He suggested to treat Peyronies Disease growth hormones - has anyone heard of this and can recommend this as a path to treat Peyronies Disease
Secondly does anyone know of any side effects of years on pentox

thx

[newguy]

just got back from my doctor with 6 months supply of pentox - hes great!!
He suggested to treat Peyronies Disease growth hormones - has anyone heard of this and can recommend this as a path to treat Peyronies Disease
Secondly does anyone know of any side effects of years on pentox

thx

Iceman - Great news on the pentox front . Pentox is a very safe drug, and I haven't heard of many negative effects even when it is used over a long period. If anything, the more you research it, the safer it appears to me. If anything it probably improves your overall health.

Growth hormones for peyronie's?? That's not an approach I'm aware of. Anyone else?

[ocelot556]

As I've been researching hormonal causes of Peyronies Disease, I can assume that Comeback's Urologist has suggested HGH to stimulate androgen production, as a few endochronologists beleive that the reintroduction of androgens can reverse fibrosis and erectile dysfunction in the penis. From what I've read it's the forefront of thinking about this problem, in that there's still many lingering questions as to the risk/benefit ratio. It's sort of like killing a wasp with a flamethrower. Ideally, however, the HGH-induced androgen levels would supercharge the healing process of the smooth muscle.

Naturally it's assumed that the patient is androgen deficient or the receptors for androgens are damaged by the fibrosis. Obviously this isn't the case with all Peyronies Disease cases.

I have a link to an interview with a doc regarding this, but the article itself is unreadable. Instead I can link to another forum that has reprinted the article in total in one of it's threads. I've done so in a previous thread here, but will again if useful. I'm not a specialist in hormones or anything, this is all my assumption of this doctor's methods.

[Iceman]

he only suggested this as an option - i really dont think he knows too much about Peyronies Disease - he just writes out the prescription for pentox and thats about it

[Cedric]

Hello everybody I was supposed to post this message some time ago but my computer broke down and here we are some weeks later. I private messaged Hawk about two weeks ago seeking advice, but he told me rightfully so that everyone should benefit from the message so I should put the question on the board and put it to the community, so here it goes. Here was my question:

Hello Hawk I have have read many of your posts and you seem to be very well informed on the aspects of ed. I was hoping I could share my experience with you. Right now I am 27 years old and I believe, I have some form of ed caused by possible peyriones disease. I live a healthy lifestyle: occasionally drink, do not smoke, and maintain a healthy weight in accordance with my weight. However, my penis can't maintain an erection and it is scary because I do want to have a family and kids but Am scared to even approach women now because the knowledge that my penis will not perform as it used to.

Symptoms:

1. when penis is stimulated for erection, it stays hard for about ten seconds and then just goes down.

2. on the right side of the benis near the base there is the indentation ( probable peyriones) where the penis just curves, but it does not hurt. My theory is the scar tissue that has build up here has does not allow the penis to maintain an erection kind of like re-routing a river.

3. still get morning erection


Conclusion:
Do you think the possible peyriones and the indentation could actually cause one's ed if all other possible factors have been ruled out. And if I do go to a urologist, what should I know in order for me to be an informed patient who ask question of his doctor rather than just listens without even questioning. Thanks again

[Starting2looseHope]

Has anyone Peyronies just gone away? I keep reading and hearing from doctors that it can just go away with no medical treatment. Has this been the case for anyone? Even if you were on oral meds...has anyone gone away?

[Hawk]

Look at our topic entitled "Improvement"  Many fail to post there and just refer to improvement in other topics but there are some accounts of improvement there.

[Starting2looseHope]

I am not sure where to post this but hopefully someone can give me some insight. Along with have a bend in my penis i have noticed that their are dents in my urethra. The doctors did not seem to care about this. But about an inch up there is a dent...almost like someone tied a small piece of string around my urethra. Also the base of the urethra seems to be hard and swollen to some extent. Any ideas? I really hope someone can answer this, as the majority of my questions seem to go un-noticed by both doctors and forums. I am 22 and there is absolutely no way i could continue to wake up every morning if I become impotent at such a young age. I just wish i could find one person or (doctor) that actually gives a ****.

[cowboyfood]

Hawk,

I noticed in your posts that you have or had a dent.  That's what I have, and I wanted to know if you could enlighten me on what it is, and what it could be??

Ever since about the middle/end of December 2008 I noticed a dent, about 3/4" long, located on the top/right side, about an inch below the glans.

From what I understand, it sounds like it's the same as a scar, plaque, etc...the same stuff.

My uro felt a scar in the area of the dent.

Basically it's remained about the same, maybe a little more obvious; but about the same.  The entire time I've noticed about 15 - 20 degree bend slightly upward from the point where the dent is located.

thanks,

C

[Jackieo]

Cowboy:  I understand the dent from our many e-mail exchanges.  I have this question:
My Uro talked about linear and banded plaque.  (I know this is neither of our areas of expertise)...could your particular case could be evidence of a one-sided banded plaque.  From what I understand, this would be atypical (maybe half-of) the "hour-glass" de-figuration (is this the right word?....spell check says it is not a word!) ....?
Just my two cents!.................
JackieO

[cowboyfood]

Cowboy:  I understand the dent from our many e-mail exchanges.  I have this question:
My Uro talked about linear and banded plaque.  (I know this is neither of our areas of expertise)...could your particular case could be evidence of a one-sided banded plaque.  From what I understand, this would be atypical (maybe half-of) the "hour-glass" de-figuration (is this the right word?....spell check says it is not a word!) ....?
Just my two cents!.................
JackieO

Outside my area of expertise is a huge understatement!  

Recently, I remember now that sometime last November or very early December I noticed a "bump"....a small swelling or something...on the spot where my dent is located...I believe the "bump" must have disappeared pretty quickly...It just went away.  It was december ish when I noticed the "lifting" of the top portion of my penis...then I noticed the "dent."

I've seen several posts about dents...it could probably be called a "bend" if it was located elsewhere; or even a "hinge"...but, from what I can tell...It sounds like what others would call a dent.

C

[Starting2looseHope]

I am not sure if this is related to Peyronies or not...but i have a red scrotum time to time...mainly after ejaculating. There is kinda of a ichy feeling on the left side, and a dull uncomfortable feeling. I have heard people describe soggy testicles...except in my case the left feels like it is weighing down more. Also my scrotum shrinks up more then it use to and mainly on the left side. the very bottom of the base of my penis on the sides also turns red and hot/burning sensation almost. Its weird that i have noticed this in the past but never thought it to be abnormal. After reading about it im sure something is wrong....i think...Also the base of my urethra, actually in the scrotum, is different..it seems more swollen and harder. Especially during erections. And my tested seem to be more off center...more noticeable when my scrotum is shriveled or i am erect. Sorry for all the question...i feel like i ask 10 a day on here...im going to the doctor (hopefully a uro) tom. Its definitely the least of my worries...i just want to make sure its nothing serious.

[Hawk]

Hawk,

I noticed in your posts that you have or had a dent.  That's what I have, and I wanted to know if you could enlighten me on what it is, and what it could be??

From what I understand, it sounds like it's the same as a scar, plaque, etc...the same stuff.

My uro felt a scar in the area of the dent.

Cowboy,

You are correct that a dent is scar tissue just like that that can cause a curve.  The type of deformity is dependent on the location and the degree of scar tissue.  Evenly dispersed scar tissue may cause a loss of size with no curve or dent.  While it is only an anology, think of the guy that makes all the shapes from balloons.  The shaping process is the same, the wide variety of shapes is controlled by where the process is applied.  Peyronies Disease is similar in that regard.

[Cedric]

Hawk:

I am going to be going to the uro, but I don't want him to take control of the conversation, and just tell me it is my age (27) and I have nothing to worry about. I want to be able to talk to him about my "dent", but also ask him questions so I could rule out all physical possibilities before he even starks contemplating my so-called mental state. Can you help me out with coming up with some informed questions. Thanks

Cedric

[Starting2looseHope]

I am having a difficult time figuring out if I should have sex, and how much I should have. My doctor said go for. I didnt mention anything about usually doing it a couple times in one sitting. I have also been told not to be sexually active if there is any inflammation (plaque)...this doesnt make sense to me tho. If i have peyronies that means I have plaque, which means i have inflammation so i should not do it? This was in response to a comment I made about the base of my penis (the part that goes into the scrotum region, has been red and seems to be larger then normal) So should i stop having sex until the base of my penis goes back to normal? This could be never? Also if i have sex the first erection is always the hardest...but i usually like to to do it once or twice after that. The erection is not as hard but hard enough....should i cut this out? Basically meaning sex in general.......

[LWillisjr]

I am having a difficult time figuring out if I should have sex, and how much I should have. My doctor said go for. I didnt mention anything about usually doing it a couple times in one sitting. I have also been told not to be sexually active if there is any inflammation (plaque)...this doesnt make sense to me tho. If i have peyronies that means I have plaque, which means i have inflammation so i should not do it?

S2LH,
This question of having sex has been raised several times. I would be curious as to who told you "not to be sexually active?". I believe most members here will tell you that you should remain sexually active, and that most doctors would tell you to also remain sexually active.

What I would be careful about if I were you is having sex multiple times in one time. Even though you are hard enough, the fact that it is not as hard means that you are more susceptible to trauma or bending during sex. This can cause more plaque to occur. So be careful.

And finally, it sounds like you have some swelling at the base of your penis. This does not sound like Peyronies to me. You should discuss this with you doctor and see if there might be a different problem here.

[RichB]

How long do you think it would take fibrosis to set in with the rest of the tissue of the penis?

[cowboyfood]

All,

As I've previously stated, I've got an dent, or indentation, about 3/4" long located about an inch below my glans, on the right side, on the top - top/left portion of the shaft;  when erect, there is about a 20 degree upward curve from the area of the dent.

My question is if anyone has noticed what I may notice: When I'm partially erect or fully erect, it looks like the part of the shaft that is below the dent on the right side seems to be "pushed out" a little...or, maybe it's not, it just looks like it compared to the indentation.

CF

[Fredca]

Cedric, if you are riding a bike or perform any action that could possiblly "compress" your perineum, stop doing that right away.  

[ken 2351]

Greeting All,
I'm new to the forum and thank you so much for your warm welcome. I'm a 56 yr. old male with Peyronies Disease. I've had the condition for 5 years now.

After reading some of the posts I feel somewhat puzzled. I have no pain or plaque associated with Peyronies Disease. I have a 60 degree upward and to the left bend. I wonder if my condition can be something other than Peyronies Disease. I've read about dorsal penal thrombosis.
I live in China and have tried some Oriental procedures. The last attempt was bee venom therapy. I injected about 10 live honey bee stings to the affected area. No luck. In the states I tried topical verapamil and still no success.

Does anyone have an idea what I might have?
Thanks for your help.

[LWillisjr]

After reading some of the posts I feel somewhat puzzled. I have no pain or plaque associated with Peyronies Disease. I have a 60 degree upward and to the left bend. I wonder if my condition can be something other than Peyronies Disease. I've read about dorsal penal thrombosis.

Welcome 'ken 2351' and sorry to hear you have this disease. You say you have this for 5 years, were you initially dignosed by a doctor or are you saying the curve first appeared 5 years ago? Becasue it is possible to have plaque that you alone cannot feel. Generally it takes an ultrsound to more accurately determine the size and shape of the plaque.

If you know for sure that there is no plaque, then yes it sounds like you might have something else going on. Hopefully some of the other guys here will have some suggestions. My advice is to get to a specialist there in China to determine for sure if you have Peyronies or something else.

[George999]

While all Peyronie's disease involves "plaque", it is not always palpable.  That is, in some cases it is not possible to "feel" the plaque.  But just because you can not feel the plaque does not mean it is not there.  That is why urologists who specialize in Peyronie's usually ask for a photograph of an erection.  If you have no pre-existing curve or deformity and it suddenly appears, that is almost always Peyronie's, with or without palpable plaque.  - George

[MUSICMAN]

After about 3 1/2 year and the trial of suggested methods for improvement of my Peyronies condition I have
come to the conclusion that I am at the end of the road. At the degree of my bend sex is not possible. At my age if a wonder drug will come it will be to late for me. Only surgery would help my condition and the cost is far out of my ability (no insurance help). My marrage  of 37 year has made changes in the feelings for each other. Instead of living with this anguish I am wondering if there is a drug that will bring my useless
erections to a full stop and also to bring my sex drive to a I don't care attitude. I know this seems against
what the forum is for but I don't see any whey to find peace. If anyone has the information I need please
send me a pm as no need to pollute the group.                  Musicman

[Tim468]

Musicman,

I am so sorry to hear of your pain - it is palpable and sounds terrible. To help me understand your position, I went back to read all of your posts, starting in July of 2007. It seems that surgery with a graft was suggested as your best option then, and it might be still true. You state that you cannot afford this, but have you explored all options?

If you have no medical insurance, have you looked at SSI or disability insurance? Have you looked at Medicaid/MediCal or MediCaire as a source of funding? If you have pain, that may qualify you.

If you call the surgeon's office and ask what options they know of, the office manager may be able to help you obtain coverage through mechanisms of which you are unaware. Certainly, when we see young patients (I only see kids) they are often uninsured and our social worker helps them find other sources of money.

Also, if you are in the Xiaflex trial, when it goes to open label, you will get drug and not placebo (currently, you should be "blinded" to what you are getting).

Finally, have you and your wife sought counseling? That too may be found through community mental health centers at low costs. That may help your marriage and allow you to find alternative ways to establish intimacy that work for both of you, not just "intercourse or no intercourse".

I think that there are probably options available to you that you do not know about, because the medical system is so foreign to you. But they are still there and one can find help.

Tim

[ohjb1]

To musicman - The results of the Xiaflex trial should be available in 4-6 months. The hope is that the drug study will show positive results. Although it may seem hopeless a few more months of this suffering is probably bearable.

[alain_br]

Tickling sensation ?

I have recently been diagnosed with peyronies and after taking oral medication (presently on ACL, Vit E and propolis) seem to be feeling a tickling/tingling sensation where previously I felt some pain. Has anyone else experienced this ? I am hoping that this should lead to some improvement, but do not want to delude myself.

[Racer]

Over the past few months, I have noticed curvature of my "instrument," when both flaccid and erect. It has always had a slight left-leaning curve, but lately, the curvature has been much more obvious. I have not experienced any pain associated with this, nor have I noticed any lumps or scar tissue, although I now encounter difficulty maintaining a long-lasting erection/ejaculation. Could excessive masturbation have caused this? Could it possibly be Peyronie's Disease? What should my next course of action be? Thank you in advance for your assistance!

[LWillisjr]

Racer,
Without more information it is very difficult to give any advice. What degree of curvature do you think you have?

If you are not having any pain, or any other issues, then I wouldn't be too obsessed about it. If you are really concerned.... then the best advice I can give is to get to a urologist and have them examine you and assess your symptoms.

Les

[Iceman]

is it worthwhile seeing my uro if i am doing everything on this forum?? - i mean whats the point - what can he tell me thats not already here??

[newguy]

Iceman - To an extent you have a point. It depends if anything significant has changed in your condition since you last saw a doctor, or if you wish to enquire into options that simply cannot be considered outside of that environment (injections, surgery, etc).  If what you're doing isn't working, maybe go for some of the most recently talked about suggestions: curcumin in coconut oil, or maybe even Low Dose Naltrexone. As long as you're doing all you can, you can't really ask anything more of yourself.

[Iceman]

newguy - OK so what is this curcumin and what is it meant to do and where do i buy it - i checked iherb.com and they have it - is this a good way to go as i dont live in the usa - plus im a bit scared to take ldn....also just found this : http://www.youtube.com/watch?v=6eJvxSXQKCI - - - -your thoughts on this

[androman]

Have you all seen this non surgical treatment for Peyronies Disease?

(link disabled)

Full disclosure.  I do represent this product as an affiliate.  If anyone has any questions or needs additional info, please email me at androman101@yahoo.com

They stand by this product and guarantee it 100% or your money back.

It is backed by scientific studies.  Please visit the site for full details, videos, testimonials, and clinical data.

I do not suffer from Peyronies Disease but I did use this product prior to becoming an affiliate and although it did not add the full 1.4 inches in length, it did add right at one inch in length.

[jfl]

I have had Peyronies in the bottom half of my penis for about a year and a half.    Last 2 months I developed a burning pain mid penis and am getting a lot of shrinkage and curviture in my penis now.  I easily have lost 3 inches of length and half my girth.      I always thought the pain was just present when you get an erection.  My pain is when i am soft.     I have no interest in sex as my penis just burns.     Is this burning pain a somewhat normal event ?
My urologist was of no help.     Any suggestions ?

[George999]

If you tell us what general area you are located in, someone here can probably recommend a urologist who CAN be of help.  - George

[jfl]

I am located in the Akron, Canton Ohio area.

thanks

[cowboyfood]

I am located in the Akron, Canton Ohio area.

thanks

I posted this a few weeks ago under the "urologists" thread:

I was surfing the net investigating Pentox's use as a treatment for Peyronie's Disease and I found a urologist located in Ohio that prescribes Pentox.

I've been on Pentox for about 5 weeks.  I'm in Atlanta, and a local uro prescribed Pentox for myself, but this may be of interest to those in the Ohio area.

http://en.allexperts.com/q/Urology-Male-issues-989/2009/1/curvature-pentoxyfilline.htm
http://www.drleslie.org/

[jimifan]

I have had Peyronies in the bottom half of my penis for about a year and a half.    Last 2 months I developed a burning pain mid penis and am getting a lot of shrinkage and curviture in my penis now.  I easily have lost 3 inches of length and half my girth.      I always thought the pain was just present when you get an erection.  My pain is when i am soft.     I have no interest in sex as my penis just burns.     Is this burning pain a somewhat normal event ?
My urologist was of no help.     Any suggestions ?

JFL:

I am about on track with your onset and experience.  My first symptms were in November '07, so a little closer to two years ago.  I had extremely painful erections for the first 12-18 months and then the pain subsided.  The same time the pain subsided, my erections became less rigid and significantly smaller.  I'd estimate that I've lost close to two inches.  Like you, I experience a burning sensation or pain now, even when I'm flaccid.  It comes and goes and is more annoying and worrisome than a "buckle your knees" kind of pain.  My ED seems to be worsening and I seem to be losing more size.  I've also posed the question on this forum as to wehether this is part of the cycle.  No one seems to know.  At least we know that our cases seem to be similar.  Please keep me posted of any developments and I'll do the same.

Bobby

[jackp]

JFL / Bobby

You need a Male Sexual Function specialist not a general practice urologist. These doctors are hard to find. The one closest to you in northern Ohio probably is Dr. Montague at Cleveland Clinic.

IMHO The best is Dr. Milam at Vanderbilt in Nashville TN. He specializes in difficult cases. I had to travel 3 1/2 hours to see him and would gladly travel 3 1/2 days.

There is no single option that works for everyone. You need expert help.

Jackp

[jfl]

Thanks everyone for your replies.
 
JackP ,  I did see Dr Montigue about a year ago.   He examined me and said basically  "Yep peronies"  nothing he could do for me.   He said come back and see me when you need surgery.  His manipulation of my penis during the exam really kicked things up and it has been straight down hill ever sense.   But you know, I think I will give him another try with the new burning pain that I now have when I am flaccid.

jimifan,   I never really had pain with an erection.  Maybe a little bit at first then it would subside and sex would be pleasurable.     Now I am in pain and dont even want to think about sex.  My wife is very understanding thank God.   It seemed when the inflammation started in the middle of my penis up to the head the burning started.    It keeps me awake some nights.    Very hot baths seem to greatly help.
I will keep you up to speed if I find any help.   I hope I do soon.   I am really small and curved now.
I am afraid to have sex and embarrassed with my male member now.

cowboyfood,   Does the pentox really help ?   I would be interested in how you do with it.
I am ready to try anything now.

[Iceman]

jfl - pentox helped me - man i was in such pain - jus gotta ride it out - it will pass - get on the pentox asap!!

[George999]

cowboyfood,   Does the pentox really help ?   I would be interested in how you do with it.
I am ready to try anything now.

Jfl,  I have been on Pentox for over a year now.  I have not had one bout with inflammation since starting it.  Pentox works by blocking the cytokines that inflame the penis.  The problem is the difficulty in getting it.  It is not FDA approved for Peyronie's and the big drug makers do not want it approved because it is a cheap, easy to take generic drug and their is no money in it.  Most of the urologists would prefer to do surgeries because there is a lot more money in that.  The links provided by cowboyfood should lead you to an Ohio doc who prescribes Pentox.  You should try that before you put yourself into a position where you are pushed into possibly unnecessary surgery.  Naltrexone is also on the horizon now and is doing miracles for literally thousands of people with a wide array of autoimmune related diseases.  It is another dirt cheap but very effective drug that may show itself effective for Peyronie's as well in the very near future.  This is not an environment where I would leap into surgery.  - George

[Manrico]

Hi, This is my first post on the board, though I've read for quite a while.  I'm a 27 year old male who has had this since I was 18.  It has slowly worsened without stop over these 9 years.  Originally it was just the left side, but recently after an injection I got it on the right side too.  My question is this.  Have any of you, especially young folks on here, ever used Accutane to treat acne.  I had very bad acne and took this medication when I was 17.  Within a year I had very bad tendonitis in my elbows and Peyronie's, both of which I still have.  Ever since I feel I have had an increased risk for injury in general.  When I get hurt I very slowly if ever heal completely and scar easier than I should.  These types of problems seem to be a somewhat common, though not often discussed, side effect with the drug and would be consistent with Peyronies (healing that went wrong).  Please let me know, if anyone else has had a similar experience!

[newguy]

Manrico - One other member did make a post about experiencing joint pain from Accutane. When I check out the wikipedia page, some of the rare side effects for this drug are outrageous considering that this is a spot treatment: http://en.wikipedia.org/wiki/Isotretinoin . I notice that in rare cases it is thought to cause Crohns disease, which is an autoimmiune and inflammatory condition. It also appears to cause other inflammatory conditions (inflammatory bowel disease etc) and is in reported than in some cases the following conditions persist, even after discontinuing therapy: alopecia (hair loss), arthralgias, decreased night vision, inflammatory bowel disease, degenerative disc disease, keloids (excessive collagen, as with peyronie's), bone disease.

It's hard to tell if the tendonitis and peyronies which occured soon after taking this treatment are truly linked to it, or whether this is coincidental. People have tried to link peyronies to various drugs in the past (propecia etc) and it's hard to ascertain the merits of that as most people are typically one one medication or another anyway. I haven't found any signs on the net that this acne medication and peyronie's are linked. However, the fact that these TWO conditions suddenly appeared when you took the acne treatment is something I'm factoring in, as well as the wikipedia statement relating to the symptons persisting even when treatment is discontinued (as appears to have occured with your tendon issues). I don't want to make outlandish statements, but "maybe" there is a chance that this drug increased your susceptibility to developing problems brought on by otherwise insignificant injuries. Maybe you already had this propensity and the acne treatment ramped it up a notch? It could of course be that all of these issues would've come along anyway and that it's purely coincidental, but the possible autoimmune and inflammatory side effects of Accutane have got me thinking. I wonder if you'd have been helped by Low Dose Naltrexone. I'm getting a bit ahead of myself here. I'll let others chime in.

EDIT:  
For your condition to worsen over a period of nine years, I can see how that would be very troubling for you. As the progression is so slow, it suggests that a treatment such as VED or traction could've been used to good effect. At least that is my belief, and it might be worth looking into those options now. It does appear that you are very suspectable to injury by fact that an injection brought on a further bout. I would definitely avoid injections at all costs in future (with the possible exception of Xiaflex if that eventually becomes available) and possibly start on Trental, L-arginine and Viagra (and maybe curcumin an vitamin d), especially if the recent worsening of your condition is still progressing.