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

[George999]

You are coming here asking for help with corporal fibrosis when you don't even know if you have corporal fibrosis.  Only a doctor can correctly diagnose your condition.  I suggest you go to a real doctor and find out what you actually have and THEN come back here and maybe we can offer some further suggestions.  The fact that Procepia is associated with fibrosis problems does NOT mean that it causes fibrosis problems.  People who have fibrosis problems generally have those issues because they have underlying metabolic problems which prescription drugs and even supplements and certain foods can aggravate.  You ask if fibrosis is reversible.  The reason you are hearing different responses to this question is because different people, even different doctors have differing opinions on the matter.  But until you get checked out by a doctor, you don't even know what your problem is.  So do yourself a favor and see a doctor and get a proper diagnosis.  - George

[Bob22]

Hawk I disagree, I've used them and wholeheartedly felt that they worked a lot for me.  I bet a doc would just give him a script for ED meds and say theres nothing else to do.  Might as well try something.  

Also let me tell you my story. I damaged my penis a couple years ago I had ED and shortening along with significant lack of overall elasticity but I didnt or dont have a curve.  I have never seen a doc but assume scar tissue was and still is my problem, however I used these products and my condition improved dramatically, certainly not 100%.  That is why I suggested them.  What is your knowledge of these products?

[Hawk]

Bob,

You are free to disagree.  However, I can think of few things more irresponsible than for someone to self-diagnose, then self-treat from internet sites without ever seeing a doctor.  That is doubly true when they do so from a site with no professional restrictions that is established solely to make money for the site owner.

The particular site you mention has every warning mark of snake oil sales.  It is based on testimonials with no clinical trials, it is sensationalistic, it is operated for money, it relies on the credentials of someone whose credentials and reputation cannot be verified other than on his site.  The site is full of disclaimers like

This statement has not been evaluated by the Food and Drug Administration.  It is based upon our customers' experiences.  This product is not to intended to diagnose, treat, cure or prevent disease.

This guy gives no explanation of how it came to be that he has found all the secret combination of ingredients that have avoided other researchers.  He provides NO body of evidence.  Possibly he just woke up with inspiration to dump a little of this and a little of that with some eye of newt in a blender and by shear luck it was the perfect formula.  How did he know it worked? Because it was fully substantiated because "she said the moment she put the cream that was miraculous for his penis, on her clit that she felt instant super charged engorgement" (presumably this was after he sold it to her prior to getting any testemonials)

He sells ingredients with known dangers like Yohimbe Extract.  Furthermore he expects people to fall for the concept (and they do) that these ingredients are actually present is some quantity with no impurities and that they can be absorbed by the skin to provide therapeutic effect.

It would truly be difficult to search the internet and find a better example of what to avoid.

I thank you for presenting the opportunity to alert others.  

[Attica!]

   Hawk,
  As usual, you are the master of decorum. May I say, a bit less tactfully than you, that the actionlove web site is the biggest load of BS and crap-ola that I have ever read. What a bunch of huckster hooey. How could anyone go to that ridiculous and visually-assaulting web site and assign it any credibility?
  Also, with regards to Greg wanting to see pictures of Peyronie's. Could someone please go to the Wikipedia page, look at the picture and tell me what the degree of upward curve is? That is what mine looks like and I would like to be able to say how much curve I have. Thank you.

[Angus]

 The picture at Wikipedia shows a man with a 45 degree upward curve. Looks familiar... I used to have one but it was 45 degrees down and to the left.  

[Old Man]

Attica:

Will just jump in here and give you the benefit of my experience with measuring curves/bends of Peyronies Disease. When I wanted to get the degree of curve that I had my uro told me to get a natural erection (if I could and I did) then observe what position my penis was in with relation of sticking straight out as a reference point. If it went downward use that as a starting point, then using a degree protractor measure the highest point my erection was up or down after getting Peyronies Disease. The angle of change produced this way would give you some idea as to how many degrees of curvature/bend you developed after getting Peyronies Disease.

IOW, remember what position your erect penis was before Peyronies Disease and then observe what position it was after Peyronies Disease, whether up or down. Use the same procedure to measure any right of left curves/bends.

In my case, mine stuck straight out with a natural erection before Peyronies Disease. After Peyronies Disease, it stuck downward about 45 degrees and about 45 degrees to right of straight out, etc. So, my curve had resulted in those degrees of change from natural.

Maybe the above will help. If you have questions, just let me know.

Regards, Old Man

PS: If you want to get an idea of how many different sizes, shapes and forms penis take, take a look at this site:  www.ejacu.com

It could be considered porn, but the intent of that site is to infom it viewers about penises in general.

[Iceman]

if i dont feel any pain - does this mean that I am getting better?

[default87]

I should have clarified, I went to the doctor some time ago, about 6 months, and yes he more or less brushed me off and gave me a free sample of Levitra (did nothing).  I, like many of us over at propeciahelp.com have learned that the majority of doctors are pretty clueless in this area and unwilling to admit propecia could have such severe side effects.

I've spent a great deal of time trying to put a name of my condition, and research has led me to corporal fibrosis.  There are studies that show Propecia can lead directly to fibrosis due to its action, I believe Mew posted many of them a few pages back.

I haven't found anything that could possible describe the consistently dense, narrow, rubbery feel my penis has taken more accurately than the descriptions of fibrosis.  If you could tell me what other condition this could be confused with I'd very much like to know.

The worst thing about the side effects from Propecia is that no, we DON'T know entirely what our problem is, and we encounter resistance from the medical community every step of the way.  Which is why I am here.

[didi20031]

Iceman
I hope so!!! I am experiencing the same "phase" of the disease as you do...
Regards,
didi

[George999]

default,  I don't think that diagnosing any sort of fibrosis is rocket science.  I think it simply involves an ultrasound in skilled hands.  In any case, you are going to need to go to a doctor for treatment anyway if you hope to improve your condition.  But it is going to have to be a doctor who specializes in these kinds of problems.  Perhaps if you could tell us what part of the country you live in someone here could offer a suggestion.  Personally, I DO believe these problems CAN be reversed.  BUT you have to understand, reversal is NOT a cure.  But first you need someone willing to do some REAL investigation and come up with some real answers.  You ask what this could be other that corporal fibrosis.  My answer would be that a really severe case of Peyronie's can be virtually impossible to distinguish from corporal fibrosis without a tool like ultrasound.  That is why doctors use such tools in the first place.  In ANY case, if you really want to start dealing with this now, I would talk to Old Man about acquiring and using a VED.  That would probably be more helpful than anything else for your current situation as you are describing it.  But in the long term you need to know what you are dealing with and get further help.  Vitamin D and Pentox are also very good approaches.  I would certainly make sure your vitamin D levels are good (>50ng/ml) because if they are not, they can cause you other problems that might be far more serious than corporal fibrosis.  - George

[Old Man]

Iceman:

It is according to where you are experiencing pain or no pain that determines if it is noteworthy or not with Peyronies Disease. If the pain occurs only during certain events like getting erections, using the VED, manual stimulation or any form of exercise of the penis, that should send up red flags. It it occurs all the time no matter the events, that would be another ball game.

This event would be cause for getting professional help and fast. Each individual has a different threshold of pain or tolerance of it, so I would say that there are not set rules to determine the level of pain from one individual to another. Each person would need to set their own guidelines for their level, etc.

Whether or not absence of pain means one is getting better, that would be a good question. Only the individual would have the answer to that based on whether or not the symptoms are reduced accordingly.

Hope this does not add to any confusion about penile pain.

Old Man

[Bobby Magee]

I had the coincidence to speak to 2 men at my urology office yesterday , and a few of my sentiments were timely answered  , I have had difficulty navigating or trying to navigate this SITE since I joined months back , the 2 men I spoke to shared my view , I,ll explain in 2 Stages , 1) Im nervous to a degree since I came to realize I am inflicted with Peyronies Disease.  so my patience is limited , I know , but this site seems to beat around the bush to often , finding a heading to just share my daily journey,  and experience has been plain trying , Hawk you told me the other day you changed my input to another place as it was not properly directed , I said Okay , where the heck did you put it , so I can get some feedback , also you as the prog. moderator , or what ever also included a sign to delete directed only to my post that day , Why  you personally did not agree with me or I didn,t sound , please explain , I don,t take to much personal , as I,m well aware someone elses view on  a matter is not always mine , I see time and again a few long time members rule the roost so to speak as if this is their platform and that is that , my 2  new friends spoke first yesterday , so I  injected  after ,  2) where are the newcomers as I am , If you would let me share outlook , you don,t have many , it took many hours for me to find any type of direction to get recent outlooks , I work on the computer  several hours a day for years doing certain tasks , this is a difficult format , a little advice from a caring , compassionate , brother on the same boat as you guys are , SIMPLIFY , get off the high and know all the answers  platform and be inviting to the newcomer , ALL SELF AWARENESS , ADVICE , offering PROGRAMS profess the NEWCOMER , is the most important person needing help and direction , ......I,m well aware of the time and effort you folks have put into this Program , so some advice from another Sick and Suffering Victim , (and hopfully on some plane of recovery , thanks to you guys and others like you , SIMPLE , EASY , Hopefully my input will be healthily accepted , I,m not quitting Peyronies Society , I,m not that way , I,m sharing a view of 2 strangers I met yesterday , and some of my own personal as well , GOD BLESS all you GUYS , Bobby

[default87]

George,
It's interesting that you mention Vitamin D, as I did have a clinical deficiency last summer, which I would guess was caused by excessive drinking (like I said I was depressed at the time) and inadequate sunlight, even though I drink a lot of milk.  I believe it was around 29ng/ml with normally healthy range being 50-100.  I've been taking supplements and lead a much healthier lifestyle now.  Is vitamin D deficiency commonly noted for these problems, or is this just your own personal experience?  At any rate I doubt I still have the deficiency but I probably should get tested.  Pentox would be good to start as well, but I imagine I'd need an Rx for that, correct?


You say reversal is not a cure.  Does this mean that treating the underlying cause (in my case something due to Propecia) would result in a natural reversal of fibrosis?  This would be good news to me, as I believe I will overcome most of Propecia's effects over time (like within 2 years, based on other testimonials).  I will likely still get the VED to gain some size back, so that waiting for further improvement will be more bearable.

Thank you for your help.

[Old Man]

Bobby Magee:

This forum is not difficult to work with in any way. You just have to learn the protocol for how it is set up. When you log in, go the link to the discussion forum. There is a total list of all the topics/threads with the exact heading of how each post to them should be addressed in any posting a reply.

Experiment with clicking of the various links to get uised to how you find things. Most are self explanatory. And, if you have specific questions, just ask and most any of us can direct you to the proper one etc.

Hawk usually relates the topic that he moves a post to so that it applies to the right topic. Sometimes, in his work schedule, he may not do that, so just browse around the topics until you find it,

If you need further help after doing the above, feel free to ask.

Old Man

[George999]

default, Vitamin D deficiency/insufficiency is being demonstrated by research to be the underlying cause of a whole range of problems.  Vitamin D directly affects both gene expression and hormones.  Its functions are crucial.  Deficiency is not something you want to fool around with.  Vitamin D deficiency has been directly linked to autoimmune issues which are in turn linked to fibrotic processes.  To put it in a simple way, when tissue becomes inflamed and that tissue lacks a sufficient amount of vitamin D, an autoimmune process begins.  Cytokines are released damaging healthy tissues which creates further inflammation and the process becomes an endless loop.  The natural damper on this is vitamin D.  But serum levels of vitamin D have to be raised to over 50ng/ml before they begin to spill out into the tissues.  This process can be bypassed somewhat in the case of Peyronie's through the use of exposure to UVB spectrum light.  I have experienced some success with this over time with a 5 minute per day exposure to fairly intense UVB.  For a long time I was unsure how effective this technique would turn out to be, but now I am becoming more confident that it is helpful.  The only way to actually know what your vitamin D status is is to get tested.  At this point, I have a test kit actually sitting in front of me.  They can be obtained through the Vitamin D Council for $65 by anyone NOT living in the state of New York.

Pentox DOES require a prescription, but finally, more and more urologists are willing to prescribe it.  It is VERY inexpensive and serious side effects are fairly rare although more than one guy here has been unable to tolerate it.

Reversal is not a cure in that, though your condition is likely to improve, it is extremely unlikely that it would go away altogether.  But reversal is definitely better than progression in my book and I would even settle for a cessation of progression.  I am extremely grateful to be experiencing reversal.

As I said before, I am sure Old Man would be more than willing to help you on the VED side.  Use of the VED is perfectly compatible with Pentox and Vitamin D and would likely only enhance the benefits if used wisely.  - George

[Mick]

Hi Bobby:

Your post on "Awareness and Advocacy" was moved to "Open Questions."  You will find it there with a number of replies.  It's reply # 1073.  To find one that has been moved without knowing where, you may find it by going to the author's profile (in this case yours) and clicking on "See recent posts by this member" which is found near the bottom of the page.  Hope this helps.

Mick

[Hawk]

BobbyMcGee,

I will send this to you in a personal message to make sure you see it but I post it here as an open response to your questions.

This forum and the PDS was established because of a passion to give members a voice and forum FREE of censorship.  It has prospered in large part because there was no moderated forum in existence that was free of censorship. This forum does not delete or edit posts based on my opinions or the opinions of the moderators or advisors.    I have had lively even heated arguments with those I absolutely disagree with but have never deleted a single word of such a post and NEVER will.  

I have NEVER deleted a post on the basis of my disagreement with that post or because it was poorly written or off topic.  I move less than 1% of the posts here and do so only to put them under the topic that relates to what is being discussed.  

Per forum rules, the only time I EVER delete a post is:
If it is a duplicate post - If a member made the same post two times.  Sometimes people double post by error in the same topic one post right after the other.  Sometimes they deliberately post the same post in more than one topic.  I delete one of those double posts and leave the other.

On occasion I delete posts that just no longer apply such as: In the middle of a discussion on surgery a member may post that he wants to delete his post but cannot.  Other members may say "send Hawk a private message for help".  They may say "we used to be able to delete but now we can only change our posts".  When I read such, I will delete the post as requested and also delete the responses since they now make no sense to the reader with the original post gone. Even then I usually only delete my posts or technical assistance posts of other forum moderators.

If a member clearly violates forum rules I may delete their post after warning them but out of thousands of posts this has only ever happened once.  

Editing posts:  I edit subject lines on posts.  Very Rarely I will correct a word on a post if it makes it difficult to read and I feel that I know the author well enough to know they would appreciate me making the correction.  The same is true if the word "NOT" is left out and changes the entire post.  I ALWAYS contact the author and let them know in case I misunderstood their post.

Hawk.

PS: We are here to knock ourselves out helping you navigate the forum.  If I did not want to help I would not have undertaken this project.  Feel free to contact me any time and I will do what I can as soon as I can.  That includes walking you through the forum over the phone if necessary.

[nemo]

Thanks for being a great Admin Hawk, and for all the time you invest in this forum.

Nemo

[Tim468]

I have gotten several messages that demonstrate that some cannot or have not yet learned how to navidate the forum. The last message I got was an email that was "flagging" a message - talk about not responding appropriately!

Perhaps we should make up a document to guide newcomers on how to use the site, including screen shots, etc, so that they can go there to learn how to get around first, and then start posting messages.

That said, there are always going to be those who struggle in the electronic medium, no matter how much help they get.

Tim

[Iceman]

does anyone think that it is necessary to see my uro next week as i do not think he will have anything new to say - i mean what new light can he shed on the topic and what can he offer me other than 5 minutes at the end of his long day...its just a boring , time wasting exercise - could be better spent down at the beach

all thoughts are appreciated as I am about to make the call to cancel the appt...

[Thin Man]

I'm wondering if anyone has any advice for me about getting an ultrasound.

I have a justified fear of needles being stuck in my penis - that's how I got my injury to begin with. As patient of Dr. Irwin Goldstein I had a microvascular bypass done in 1995 for erectile functioning due to arterial blockage. In one of the tests leading up to surgery, two large needles were stuck into my penis towards the distal end, just behind the glans. The resident had some difficulty with the needle on the left side and had to stick me four times to get it right. It was extremely painful. Later I developed a hard lump in that spot which Dr. Goldstein assured me would go away. It didn't. About nine months later that's where my scaring began. Over two years diffuse scarring spread to about half my penis, resulting in decreased circumference and sensitivity, although lucky for me very little curvature. My injury suddenly worsened about 10 weeks ago from carelessness on my part - I was using an erection ring while experimenting with a very low dose of Cialis (which wasn't working that well for me obviously). Huge mistake, please don't do this. I had a very painful ejaculation and immediately developed an hourglass deformity about mid shaft, further narrowing of the distal half of my penis, and some shortening, still no curvature, but greatly reduced erectile and ejaculatory function which I hope will improve.

Anyway I finally, finally, FINALLY! (after begging and pleading for an earlier appointment to no avail) get to see Dr. Hunter Wessels on Thursday. I'm fairly sure he'll recommend an ultrasound, since my injury is unusual. I'm told the needle used for this purpose is quite thin and risk for damage is minimal. Still, I'm not too crazy about anyone putting a needle in my penis for any reason.

Has anyone had good or bad experiences from this procedure?

Are there options I should know about?  

Has anyone had a similar injury?  

Sometime when I get enough energy I'll write a more detailed history for the curious. Right now it's taking all my time and energy to investigate treatment options and stave off depression.

Many thanks,

Thin Man

[Hawk]

Thin Man,

You will have to make a decision on this.  Several people on the forum will tell you they would avoid that injection.  Several have had it and will tell you that the shot caused no problem and the data gained was useful.

I too believe that injections of ED drugs caused my Peyronies Disease.  That being said, I gave myself about 75 injections over an 8 month period.  If I were in your shoes, I would probably get the single shot.  It is painless and close to the smallest gauge needle made (insulin needle).  

Whether anyone else tells you this at the appointment or not, use the thumb and forefinger to APPLY DIRECT PRESSURE TO THE INJECTION SITE FOR 5 FULL MINUTES.  This just reduces any risk of minor bleeding in the penile tissue.  Whole blood is an irritant to tissue and can reportedly cause scarring.  Pressure application after trimix or bimix injections is STANDARD protocol.

After applying pressure, relax and let the injection do its job.


Good Luck

[jackp]

Thin Man
Wow what a story!
I also had an injection for my Color Doppler. It was painless and did not think much of it at the time. The diagnosis was venous leakage. The "doctor" offered me trimix and I tried to use it for about a year. Those injections lead to scaring in my corpora's (corporal fibrosis) which made things worse.
Take Hawk's advice and hold pressure for 5 minutes. Yes I would let them inject the small amount of PGE1 for the test but that us all.
Lots of Luck and let us know how the procedure turns out.
Jackp

[jackisback]

Hawk,

Let me make sure I understand your directions crystal clear. Press on the spot where the needle went in with one finger while pinching on the other side of your penis with the other finger (or thumb) to hold pressure, right?  I'll be getting an ultrasound in a few months, and I just want to make sure that I do this right. The last thing I want is more Peyronie's. I'll want to get this right, even if I have to get you to explain it to me over the phone. j/k

[Hawk]

Hawk,

Let me make sure I understand your directions crystal clear. Press on the spot where the needle went in with one finger while pinching on the other side of your penis with the other finger (or thumb) to hold pressure, right?

You are exactly correct with the method.

Hawk

[Danztheman]

My results of having the grafting surgery 12 weeks ago today has been for the most part, successful.  It is a slow recovery process because the nerves take time to regenerate.  I was able to have intercourse and oral sex 6 wks after surgery and my penis, which was at about an eighty degree angle is once again straight.  I have lost about 3/4's of an inch of length and am using the Fastsize during the recover period to hopefully regain sosme of the lost length.  Because of some lost sensation, which hopfully will come back, I have been using Viagra and Cialis to have more firm erections.  My Urologist has put me on a daily therapy recovery plan of using the Soma pump to create erections for 3 minutes and 20 minute warm water soaks plus vigorous 5 minute messages of the penis with Vitamin E.  For the first 2 months or so, I was getting shooting pain on a frequent basis because the nerves are regenerating.  Now after nearly 3 months, I still get the shooting pain but not as often.

For anyone considering the surgery, the recovery process takes time.  My Urologist says it can take 6 months to a year to get the desired results.  So be PATIENT!

[Hitman]

just of curiosity are you using Vitamin E oil or cream

[Tim468]

Good for you Danztheman!

Hang in there - sounds like you have come a long way. I wonder (out loud) if a bit longer with the VED and less vigorous massage would be overall less traumatic to the penis and more likely to lead to improvement...

Tim

[alexnden]

I was diagnosed with Peyronies Disease last year and have been seeing a doctor that I don't feel is all that "legit".  Everything he prescribes is not covered by insurance, but can be purchased from his office.

When I search online, most urologists don't seem to specialize in Peyronies Disease.

Any suggestions where I can find doctors who do specialize only in Peyronies Disease?

[jackp]

alexnden
When I was first diagnosed with Venous Leakage the doctor sold me trimix out of his office. It had to be cash. I do not think that is legit.
I switched doctors and he wrote me a prescription for trimix and where to git it filled. When I compared the cost the doctor was making about a 1000% mark up.
After my experience with trimix for ED. It caused corporal fibrosis and made my condition worse. Do Not Stick A Needle In Your Penis For ED Shots!!
Jackp

[ComeBacKid]

Jackp,

I've always believed sticking a needle into the plaque can't be good.  Our own PDS verapamil injection survey reflected that in a way, showing that verapamil injections weren't very effective.  There was some talk of the "lariche" technique being effective in europe, where they just use a needle and inject it into the penis to break up the plaque.  Apparently that didn't become to popular, you don't hear much about it...

Comebackid

[alexnden]

alexnden
When I was first diagnosed with Venous Leakage the doctor sold me trimix out of his office. It had to be cash. I do not think that is legit.
I switched doctors and he wrote me a prescription for trimix and where to git it filled. When I compared the cost the doctor was making about a 1000% mark up.
After my experience with trimix for ED. It caused corporal fibrosis and made my condition worse. Do Not Stick A Needle In Your Penis For ED Shots!!
Jackp

Thanks Jackp.  I have since stopped going to my doctor and am looking for another.

[ComeBacKid]

Has anyone here noticed sometimes it is harder than normal to pee, or especially with a semi-erection your urine does not come out straight but comes out to the side?

Comebackid

[nycjake10002]

Any other gay men out there suffering with this? I'm having a really hard time and would like to know if there's anyone else out there who can understand what I'm going through.

Thanks in advance,
NYCJake10002

[nycjake10002]

I too believe that injections of ED drugs caused my Peyronies Disease.  That being said, I gave myself about 75 injections over an 8 month period.  If I were in your shoes, I would probably get the single shot.  It is painless and close to the smallest gauge needle made (insulin needle).  

I too think that an injection of cavorjet(sp) is what caused my Peyronie's. Good to know that other people have experienced something similar. But how can one know for sure?


Quote trimmed down per forum rules - Hawk

[ComeBacKid]

Nycjake,

I'm not gay myself but I do have a good friend who is gay.  Hes from canada but knew right away what peyronies was.  I think when it comes to females they have no clue what peyronies is, heck I didn't even know what it was before I got it!  Some chicks may just see it as freaky or a bent messed up penis.  Where as at least with probably a lot of gay men they are away that it is a disorder.  Whether your presenting your bent member to a female or male, it really doesnt change the situation a while lot, do they still love you for who you are?  Most porn stars even have a slight curve on their unit, this is pretty obvious the more I saw of them. Maybe someday a slight curve might be the in style  

Comebackid

[Tim468]

We have gay members, some of whom are not "out" to the forum. When we talk about our partners, we need to recall that the pain we feel and our partners feel is not dependent on being straight or gay.

And, while we often point out that many (most) women are looking for more than a perfect penis in a relationship when we try to encourage young men in despair, we need also remember that many gay men are also looking for more than a perfect penis in a relationship.

I hope that this community will be every bit as supportive and welcoming as you need.

Tim  

[LWillisjr]

When I went in for my initial ultrasound, I received an injection to cause an erection. This was done with a very small gauge needle. The doctor said nothing about needing to apply pressure, just to lay there and let the medicine do its work. I had no problems or ill effects from this.

Later, however, I did start a round of 6 VI injections. Dr Levine always cautioned me to hold pressure for 5 minutes afterwards. This is because this is done with a larger gauge needle. I don't know needled gauges but for sure was bigger. And even after holding pressure I would still but somewhat swollen later and bruised.

So the pressure indeed will help, but I don't think anything will totally eliminate the swelling and bruising from VI and/or Xiaflex injections.

[ComeBacKid]

Why not request a doppler radar while flaccid, why does an erection have to be induced, common sense says putting a needle in your penis will just create more scar tissue.  A handfull of members said trimix injections have made their condition worse.  A doctors first objective is to do no harm, a doppler isn't absolutely needed to monitor progress, maybe for "data," but I monitored my own progress without this.  I wouldn't stick a needle in my penis, and I wouldn't recommend anyone else do it.  You can induce an erection with the VED if you need one.

Comebackid

[nycjake10002]

We have gay members, some of whom are not "out" to the forum. When we talk about our partners, we need to recall that the pain we feel and our partners feel is not dependent on being straight or gay.

And, while we often point out that many (most) women are looking for more than a perfect penis in a relationship when we try to encourage young men in despair, we need also remember that many gay men are also looking for more than a perfect penis in a relationship.

I hope that this community will be every bit as supportive and welcoming as you need.

Tim

I need to write something about being put under this classification. This disease is different for gay men. I really needed to feel understood by them. Certainly there are things about this disease we can all relate to but I do not believe a straight man is going to understand what i'm going through the same way a gay man would. And if there are other gay men out there going through a hard time who need someone gay to speak with then I think there should be that distinction. So I'm disappointed to see that my topic was placed under "Open Questions on Peyronies Disease (That won't fit under any of our current topics)" It only gives credence that you do not understand.

NYCJake

[Hawk]

Jake,

Your posts were moved because members are not allowed to create new topics on the Peyronies Disease forum, only in the "Off Topic: area.  That has been the rule for all members from day one of our forum.  We do have a topic specifically for making suggestions or requests for new topics.  Topics with a popular demand or that can be expected to get regular posting will be considered if they do not overlap topics already in existence.

I may be missing something but we have had several members that were openly homosexual.  They all seemed to flow with the discussion on all of our topics covering treatment and causes of Peyronies Disease and ED.  We make no distinction between homosexual, heterosexual, married, or single, since these issues are not our focus.  The condition is our focus.

Regards

[George999]

I would re-emphasize Hawk's mention of the off-topic area.  This area is wide open to new topics.  The main area, however, is restricted to major Peyronie's themes that attract large numbers of on-topic posts, plus a few more multi-purpose threads like this one.  As Hawk indicates, this has been the rule since day one around here and most of us have had topic suggestions dumped over into the off-topic area.  So no one is being "picked on" in this case, its just a case of longstanding policy.  - George

[nycjake10002]

Luckily I did receive 2 emails on my private email when the gay subject was separate. For me personally it meant a lot to me. One of these men in particular has a similar history with it that no straight man could relate to. I don't mean to be difficult, but there are some cultural differences that do affect/effect us in a different way. I was hoping to feel less alone in the world. Something happened in my relationship this past week that really took the wind out of my sails. I do not think that a straight man can relate to this in a way a gay man could/would.

In my opinion it would be helpful for us gay men to be able to communicate with one another, probably thru our private email addresses and someone who's gay and new to the disease might be more comfortable writing to another gay man and therefore feel safe.

Thanks for listening,
NYC

[Hawk]

Jake,

I still am at a loss.  A gay guy can see and respond to your post as clearly on the standard topics as he can on a topic called "gay...."  .  Why would 'where he responds' on an open forum affect your ability to communicate? Are you asking for a private topic visible only to those that declare themselves to be gay? Or possibly are you asking for a topic that only gay members can respond in Our topics deal with treatments of a mechanical, oral, surgical nature.  These topics all deal with studies, scientific, or rational thoughts on what may work as a treatment.  If you discuss VEDs, you can discuss that on our VED topic etc.  They have nothing to do with sexual orientation.  We do have one topic on Psychological Aspects".  Post what you want there concerning coping with such aspects.  Label it as you choose as long as it is not graphically tasteless (regardless of sexual orientation).

Additionally, you can make a topic for non-treatment issues in the "Off Topic"area of the forum. Feel free to label it 'Gay Men" or any such title YOU choose if you do not want to use the common "Psychological Aspects" topic. Every one that has psychological issues have unique issues.  Young, old, married, single, virgins, sexually addicted, suicidal.  We do not all share every aspect of another's struggles but we respectfully listen and contribute if we feel we have something meaningful to share.  That would be the same if there were 10 separate psychological aspects topics. We are not interested in trying to segment or segregate people into categories.

Additionally you can have any mutually acceptable conversation you want by secure personal messaging without furnishing email addresses.  I feel this pretty much covers every tool you need to freely communicate which anyone you choose on any topic you desire.

Hawk

[benjic]

Hi there - I am new to this site and was just trying to work out how to post a message and I saw your question.

I have had this type of treatment in the UK. Its called Lithotrypsy and indeed it is used to break up kidney stones. It feels like someone flicking a heavy ruler on you for 10 mins. I had 3 treatments spread out over 3 months with mixed results. My curvature has started to ease - but I am not sure as to whether its as a result of the treatment or the fact that it has just stabilised.

I am glad that I did it though.

I would like to get some facts on the nesbit technique.

All the best.
B

[Iceman]

ive been feeling a bit of pain in the past 2 to 3 days and have not had this for about 3-4 months - whats happening???

I have reduced my intake of ALC - could this be a contributing factor amongst the many variables??

[Tim468]

Hawk,

Although I think that Jake may be missing something here (which I am not articulating well, but in a word, what we suffer from makes gender orientation/preference less relevant than our shared experiences of pain, self-doubt, etc), he does raise a valid point. Apart from the simple aspect regarding the "rules" of which he was unaware, there is a precedent for what he is saying. Remember our creation of the Women-only posting section?

Jake, I really do not know what you mean when you say "I need to write something about being put under this classification". It came in connection with a quote from me you copied to your post, that does not, IMHO, place you into any "classification". Are you instead referring to the movement of your post from one area to another on the forum? If so, I assume that you now understand why we have structured things that way. We have generally tried to make it impossible to create now categories to prevent the board from becoming cluttered with new folders that obscure the broader mission of the board. Despite our attempts to prevent the formation of new topics, the formation of new folders continues.

That said, although I think that you might be missing out on what makes us all more alike than different (and because of that missing out on being able to share), I can certainly see how it might feel uncomfortable to talk about a gay-themed emotion or activity on a predominantly heterosexual board. So, for sharing feelings, it makes sense to me that you might feel held back or restricted.

OTOH, if you want to share or learn about what to do to try to get better, then it really does not matter where you place your penis during sex, or whether a supportive (or non-supportive) partner is same-sex or opposite-sex. You might be surprised at the degree of openness and willingness to share here. It feels pretty non-judgmental to me.

Also, as you stay here (and I hope that you do!), you will learn about all the different paths that we have taken to get to this mess, and what we did (or think we did) to get there. From a pragmatic standpoint, then, I will read opinions here that are willing to take a stand, despite being a bit non-PC. For instance, if a guy has Peyronie's and wants to use cock-rings to enhance his erection, or use a VED until he is boggy with edema, he will hear from us that such a practice will make his Peyronie's worse. That may verge on judgmental, but is focused on helping someone see what their practices might do to their penile health.

Finding ways to get better here with this disease is what this board is all about. If creating a Folder called something like "A Gay Man's Perspective" or something may be of help, then no one here would say that will "never" happen. Perhaps even a closed board. But my experience with women posting here is that when they were here, they were sometimes marginalized or treated paternalistically. Yet when we created a "For Women Only" sub-section, the traffic died down a lot. So there are pros and cons of creating closed sections, that may form to isolate the very people we are trying to serve.

I truly hope, though, that you will hang around to see if what we do here might be of help to you.

Tim

[LWillisjr]

Why not request a doppler radar while flaccid, why does an erection have to be induced, common sense says putting a needle in your penis will just create more scar tissue.  A handfull of members said trimix injections have made their condition worse.  A doctors first objective is to do no harm, a doppler isn't absolutely needed to monitor progress, maybe for "data," but I monitored my own progress without this.  I wouldn't stick a needle in my penis, and I wouldn't recommend anyone else do it.  You can induce an erection with the VED if you need one.

Comebackid

Comebackid,
There is a secondary purpose for the ultrasound in addition to examining for plaque. The ultrasound also measures bloodflow and adequacy to achieve and maintain an erection.

[LWillisjr]

Hawk,
I think I understand what some people are trying to express here. Even now, I'm tyring to reply to a comment from Combackid, and I feel like I am posting in the middle of an important discussion started by NYCJake.

There doesn't seem to be a way to reply specifically to someone's post, and it end up in the middle of another topic within the same thread. That is why now I see that some post the original quote in their replies so that the follow up post makes sense.

I am NOT being critical. I very much support this forum and thank people like Hawk for their time in managing all this. I'm just trying to better articulate what I think some have been trying to say from time to time. In other forums I think you can reply directly to someone's post and it shows up as an indented post under their message. I can't describe this any better without doing some screen shots to show you what I mean. And I'm not sure if this is a capability here or not.

[George999]

If I can just comment a bit on this subject.  I think it is simply a matter of using good judgment.  When immediately following onto the post in question there is no need to carry over a redundant quote.  However where confusion might occur, often an abbreviated quote will suffice as an introduction.  It is a matter of simply quoting the portion of the post you are responding to without taking in the whole scope of that post.  Using visible threads with indents is another way of doing this, I post on these sorts of forums also.  They have their merits to be sure, but they also introduce other issues, like trying to sort through all of that without being able to simply scroll a bit to have adjacent posts right in front of you.  So I don't think the format is necessarily a limitation, I think it is more a question of adapting to it.  - George