The Official Hard Flaccid Recovery Thread

[obitoo Banned Find all posts View Profile Close obitoo]

Guys, I can put together a really nice online form for us to fill out. It will compile all of our data into nice spreadsheets, charts, graphs etc - and the data will be accessible by the doctors online anytime. I will also put together an actual website dedicated to this condition. To keep it productive, I will only provide a concise description of the problem, the data, and a plea for help from the medical community. We can then write to doctors and provide a link to this site for them to review. I will put together a draft of the questionaire and we can finalize it based on everyone's feedback. Hopefully once we start getting help the site can serve as a resource for finding doctors too. Sound good?

I like the letter idea too, and it just so happens that I wrote one just like that today to the head of the Urology department at Weill-Cornell. Haven't heard anything back yet but my letter has all the right ingredients and I'm a good communicator. Hopefully they respond.

PS: I am awaiting the results from my MRI, though I'm not too optimistic since it was a laying down MRI without contrast. Still, maybe they found something. As for my Doppler today; got canceled. The doctor's script was for a "pelvic" ultrasound. So I got there and a woman was walking me in and I was like "I was hoping to have a male tech" and she didn't understand why. Once I explained I injured my actual penis and would need it and my balls scanned she explained that they don't do penile scans there at all. Her and another tech really sympathized with me and they asked the head radiologist to make an exception and the head said no. Bummer. My doctor is convincing the vascular lab at the medical center to do it there instead. Hopefully they agree, otherwise I am probably shit out of luck waiting for my uro appointment on the 28th. Will keep everyone posted. KeepingTheFaith and I are exchanging info and it sounds like we are on the right track for sure.

Will start working on things tonight.

[obitoo Banned Find all posts View Profile Close obitoo]

I seem to be getting pain in the left side of my shaft now and there is a noticeable bend starting to occur.. Started to happen around 3-4 days ago after doing hot/cold wraps. Obi, did you notice this directly after your injury? And Mr. friend, would this be considered the onset of peyronies?

Also, what is everyones take on jogging/cardio and such? I feel like im going crazy without my daily jog.

And in terms of the above post, it sounds like a great idea and I would definitely be in.

I noticed this a few days in. It seemed to start right before or alongside the pain. I started taking Co-Q10 and Acetyl L-Carnitine, basically treating it like Peyronie's. I figure it can't hurt to try and keep the tissue healthy. But we must not be willing to take a Peyronie's diagnosis lying down because that is the easy diagnosis and doctors love easy. This is NOT that. This is different. This is a blood flow injury (with possible tissue tear), which leaves our penis in a semi-rigid state and vulnerable to injury. Peyronie's is the injury and scarring of a NORMAL penis and is a systemic disease. We do not have a disease. We have an injury.

[Mr.Friend Senior MemberPE Gym Editor Find all posts View Profile Close Mr.Friend]

Guys, I can put together a really nice online form for us to fill out. It will compile all of our data into nice spreadsheets, charts, graphs etc - and the data will be accessible by the doctors online anytime. I will also put together an actual website dedicated to this condition. To keep it productive, I will only provide a concise description of the problem, the data, and a plea for help from the medical community. We can then write to doctors and provide a link to this site for them to review. I will put together a draft of the questionaire and we can finalize it based on everyone's feedback. Hopefully once we start getting help the site can serve as a resource for finding doctors too. Sound good?

I like the letter idea too, and it just so happens that I wrote one just like that today to the head of the Urology department at Weill-Cornell. Haven't heard anything back yet but my letter has all the right ingredients and I'm a good communicator. Hopefully they respond.

PS: I am awaiting the results from my MRI, though I'm not too optimistic since it was a laying down MRI without contrast. Still, maybe they found something. As for my Doppler today; got canceled. The doctor's script was for a "pelvic" ultrasound. So I got there and a woman was walking me in and I was like "I was hoping to have a male tech" and she didn't understand why. Once I explained I injured my actual penis and would need it and my balls scanned she explained that they don't do penile scans there at all. Her and another tech really sympathized with me and they asked the head radiologist to make an exception and the head said no. Bummer. My doctor is convincing the vascular lab at the medical center to do it there instead. Hopefully they agree, otherwise I am probably shit out of luck waiting for my uro appointment on the 28th. Will keep everyone posted. KeepingTheFaith and I are exchanging info and it sounds like we are on the right track for sure.

Will start working on things tonight.

I must say its exciting. Thus far we have me, keepinfaith, obitoo, guitarded, and HF Id assume. Thats 5 guys thus far. And I am sure turtle problems would love to help as well. I know its a small number but it will grow. We need to make threads over at ************* too and any other PE sites. I dont know where. Also somehow need to get in touch with the medhelp community and even the guys who firmly believe that its hormones causing the hard flaccid. It is time guys. Time to fucking shine

[KeepingFaith Junior Member Find all posts View Profile Close KeepingFaith]

This is all just outstanding information. I know i feel that we havent had a real breakthrough in quite a while, but the time has come. The ball is rolling and we just gotta stay on this day and night until we get some recognition.

And John1960, i began exercising again for the first time since the injury about 3 weeks ago and ive noticed that my standing flaccid in the shower has decreased in firmness slightly since then. Not a ton, but definitely noticeable. i run 3 miles 2-3 times a week plus weights, and i would say that you absolutely should continue exercising. exercise can do nothing but good. it increases all the right hormonal responses and helps the body regenerate.
that goes out to everyone. try to take your mind off this and just get some good exercise in. It truly helps the mental aspect of this if nothing else.

Good luck, God bless, Im praying for you all.

[Mr.Friend Senior MemberPE Gym Editor Find all posts View Profile Close Mr.Friend]

I

WE ARE GOING TO, AS THE FIRST STEP EMAIL A MODERATOR NAMED SPARKYX OVER AT THUNDERS (YOU WILL SEE WHY BELOW)

AND A WARNING TO ALL THOSE WILLING TO PARTICIPATE. LIKELY THERE WILL BE A FEW TIMES WHERE NOTHING IS HAPPENING. WE HAVE TO STAY PROACTIVE GUYS ALL THE TIME EVEN IF THAT MEANS JUST SHOOTING BULLSHIT. ACTUALLY FUCK THAT WE WILL JUST KEEP SENDING LETTERS AND SUCH.

I just sent a pm to a moderator over at ************* guys. I did this because I cant start threads there for some reason. I am hoping to get his attention so he begins threads. One thing we all need to do at the very least right now is realize thunders is the second biggest source of hard flaccid troubles. So, we need to go to that one like, 90 page forum they have in addition to our waiting and hop ethat the mods make a mass thread there to alert other sufferers, and message each and every member there who has ever had or still has the hard flaccid. Now I cant just do that. Put it this way. Hard flaccid sufferers are mainly pessimistic by nature. SO we need several members to bombard other sufferers with pm's about how we are making an effort, so they can directly see not just one enthusiatic member is contacting them, but SEVERAL, tens of members, are really on the ball ready for action. That will make for much more positivity no? Same goes here. Time to pm every member we see here that has had it or has it now.

I AS A LONG TIME SUFFERER AM ORDERING EVERYONE IN ON THIS TO TAKE THE TIME AND PM EACH SUFFERER OR EX-SUFFERING MEMBER ON EACH OF THESE FORUMS. THIS WILL TAKE HOURS, BUT HOW ELSE WILL WE REACH MAXIMUM POTENTIAL OF POSITIVITY AND HOPE IN OTHER MEMBERS SO THAT THEY ARE LIKELY TO CONTRIBUTE? THIS GOES TO ALL LURKERS TOO! (LASTLY I AM GOING TO GO ELSEWHERE ON THE NET, EVEN IN THE PLACES AND INSTANCES OF ONE OR TWO GUYS ISOLATED WHO MENTION THIS PROBLEM ALONE, AND GET THEIR INFO, SO WE ALL CAN CONTACT THEM) tTHE MORE EMAILS FROM PROACTIVE SOULS, THE MORE POSITIVITY NO? LETS FUCKING DO IT, THIS IS MANDATORY

[HFproblem Banned Find all posts View Profile Close HFproblem]

Gentlemen -

I tried to keep this brief, but it turned out to be rather long. In an effort to keep it short, I am not going to mention any specifics about my "hard flaccid" nightmare. Just let me say that I am 17 months into it, and I have experienced all of the same things you are experiencing. My heart goes out to each and every one of you because I know how difficult this is.

I have been watching this thread (and other similar threads) for 17 months. I decided I would not add any posts to the threads until I have solved the problem and come up with a cure. Unfortunately, I have not found a cure, despite extensive efforts. Like many of you, I have seen many urologists. I have undergone many expensive tests and have tried a variety of "treatments," without success. But today I had an idea and thought I would share it with you. This is not a "medical idea" about some kind of treatment that we could try (I can share those with you another time). Rather, it is a proposed plan that we can put into action to try and find a cure.

Here's the background and the plan. Many of you have written about being frustrated by your doctors' indifference - which I have experienced first hand on more than one occasion. At first I was resentful of the doctor(s), but then I realized that if the doctor knew what was going on and thought he or she could help, he or she would probably help. Because the doctor(s) have not been able to provide a cure, that must mean that 1) the doctors are most likely perplexed because this is an odd situation and he or she simply doesn't know what to do, 2) the doctor has probably tried their best (or at least as far as they are willing to take it) and is unable to help, and 3) the doctor is unwilling to perform hours of research into the problem to try and find the cure, most likely because this is such a "rare" condition and the doctor figures they will probably never see this condition again (i.e., there is no money in it for the doctor, and he or she otherwise has no motivation to go the extra mile to help us). We can't change #1, #2 or #3 about our present doctors. But I think that if we band together, we can find a doctor where #3 won't be a problem.

I remain hopeful that somewhere out there, there is a doctor or a facility that has the time, money, and motivation to tackle this problem. Sorry to use the lame comparison to a t.v. show, but I am thinking there is a "House" out there somewhere - we just haven't found them yet. This probably will not happen in private practice, as we are a "money loser" for any doctor who is trying to treat just one of us. This probably also will not happen in a larger group facility for the same reasons. But, consider an academic setting, such as medical school campuses (Johns Hopkins) - where doctors are actively performing research and who have medical students at their disposal. Or something like the world-famous Mayo Clinic, that boasts it has thousands of researchers on-site. In addition, there are many urological journals out there, filled with the names and email addresses of doctors who are interested in performing research and publishing their findings, performing cutting edge medicine, etc. In researching this problem, I have spent many, many hours reading abstracts from medical journals, reading medical texts on-line, etc. I know most of you have, too. The names and email addresses of these doctors are out there. But, if we approach these doctors individually, we are unlikely to get anywhere (as above, the doctors will not be motiviated, and may think it is just in our heads).

So here's my plan, which will require efforts by all of us. Step 1 is that we create a spreadsheet of our conditions. This would include our "code names" (i.e., absolutely no real names used), ages, duration of problem, any suspected trigger of the problem, current endocrinology findings (if any), tests performed, etc. It has to provide substantial information, but also be brief. We will have to come up with the spreadsheet categories, as a group. Then, the more of us that are willing to contribute to be included on the list, the better.

Step 2 is that we write an email/letter to be sent to the doctors. It will be much more detailed, but would be along the lines of:

Dear Dr. [X], I am writing to you on behalf of a large number of men who are all suffering from the same medical condition, as discussed in more detail below. Despite our individual efforts, we have been unable to find a cure for our problem. I have read your [book/article/etc.] and thought that you might be able to provide some help or some insight regarding this consition. It is my hope, and the hope of the men I am writing for, that you will consider our condition and will let us know if you are able to provide any assistance. We are willing to make appointments to see you and to perform necessary tests. If you are unable to help, it would be greatly appreciated if you could pass this on to your colleagues.

While there are some minor differences in our symptoms, we all suffer from a hypertonic penis in the flaccid state. This is commonly referred to as a "firm flaccid penis" or a "hard flaccid penis." The best way to describe it is that even during the flaccid state (i.e., no form of sexual stimulation whatsoever), our penises are abnormally firm. The condition does relax intermittently, such as during rest, or during urination, so we do not believe that there is a permanent thickening of the tunica or any other structures. Also, most of us do have normal erections, so we do not believe this is a typical Peyronies condition. Despite very brief periods where the penis "relaxes" and is in a normal flaccid state, the penis is almost always in the hypertonic or "hard flaccid" state. It is our belief that because the penis can occasionally relax, there must be a way to return it to its normal flaccid state. We do not know whether this condition is a blood flow issue, a nerve issue, an endocrinological response, a muscle spasm, or some other cause. For many of us, this hypertonic state brings with it pain (such as pain caused by a firm flaccid penis rubbing against clothing), excessive wrinkling of the skin, very pronounced veins which have become visible on the exterior of the shaft, and for some of us, the glans has become cold and light colored (and the glans does not fill during erection). Attached to this email is a PDF of a spreadsheet which shows more detail about the condition we are suffering from. In addition to the men listed on the attached PDF, a great number of other men are suffering. You can read more about the experiences of these other men on the following website blogs: [insert links]

Thank you in advance for taking the time to read this email If you believe you can help, we would very much love to hear from you. If you do not think you can help but you know someone who can, we would very much appreciate it if you could forward this email to them. We suspect that because of the similarity of our symptoms, there is a specific medical condition that we are all suffering from, but unfortunately we have not been able to find relief separately. We are hopeful that by providing the attached spreadsheet of data, and perhaps by examining some of us, the right doctor or doctors will be able to come up with some kind of diagnosis and cure. We belive that a cross-disciplinary approach will be needed (including urologists, endocrinologists, erectile physiologists, neurologists, and radiologists), and again we invite you to share this email with your colleagues.

Thank you once again for your consideration. You can email me at [insert email address] and I would also be happy to speak with you over the phone.

[end of sample letter]

This is just a draft - we would have to revise the email before we send it out. I haven't even spell-checked it... just wrote it on the fly.

Step 3 would be for all of us to scour the internet and find email addresses of doctors we think could be of help. The names would come from abstracts, books, on-line research for urology departments, medical schools, research hospitals, etc. We would come up with a list/spreadsheet of all of these doctors.

Step 4 would be for me to email each of the doctors, and include the spreadsheet of our group. I would then follow up with the doctors, and report back to all of you.

Step 5 (hopefully) would be for some or all of us to go and be seen by the doctors who respond that they are willing to help.

That's it for now. Let me know what you all think. I am willing to share email addresses if anyone would like to start working on this. Peace to all of you. I know this is a horrific, unbelievable torture, which is made worse by the fact that we have to suffer in silence. Please let's all try to stay positive and hope that we can find some relief.

Very well written letter, Searchforthecure. I am undoubtedly in on this. I agree with Mr. Friend, if would could gather some support from the sufferers on *************, we might really be able to get some attention. Just let me know what I can do to help and I will.

[HFproblem Banned Find all posts View Profile Close HFproblem]

I seem to be getting pain in the left side of my shaft now and there is a noticeable bend starting to occur.. Started to happen around 3-4 days ago after doing hot/cold wraps. Obi, did you notice this directly after your injury? And Mr. friend, would this be considered the onset of peyronies?

Also, what is everyones take on jogging/cardio and such? I feel like im going crazy without my daily jog.

And in terms of the above post, it sounds like a great idea and I would definitely be in.

I have noticed a bend, but the bend is usually due to the firmness in the shaft. Like my shaft is almost made out of a "memory foam" like substance, and whichever way it bends in my pants that day it tends to stay. If I personally move my hand and bend it the other way, it stays in that general direction too. Not sure if we are talking about the same thing.

[john1960 Senior Member Find all posts View Profile Close john1960]

Hf, i was experiencing what you are explaining before. Memory foam is a good way to describe But what I am experiencing now seems to be a more permanent bend even in the rare instances where it is not firm. It is accompanied by soreness as well which wasnt there before.

And Mr. Friend you forgot my name on your list there

[Mr.Friend Senior MemberPE Gym Editor Find all posts View Profile Close Mr.Friend]

Hf, i was experiencing what you are explaining before. Memory foam is a good way to describe But what I am experiencing now seems to be a more permanent bend even in the rare instances where it is not firm. It is accompanied by soreness as well which wasnt there before.

And Mr. Friend you forgot my name on your list there

oopsy fellas. Yes I would guess it may be early peyronies. One thing to help it along if it IS, is to go to riverpharmacy.co and get an order of pentox (aka Trental) whhich has become a "mandatory) treatment for peyronies sufferers. It is about 18 bucks a month, and it DOES sound like very early onset of peyronies. I would get onto using that, for months and months. It blocks a major inflammatory response that allows peyronies to progress. Id get on that as a precaution. It is the one pharmacy on the net that is totally legitimate guys, and sells the real stuff. Im not endorsing it, just letting you all know due to the fact that youd have to go through a bunch of urologists until you could finally get a script for it, which is totally expensive

[john1960 Senior Member Find all posts View Profile Close john1960]

Friend, did you go to a peyronies specialist to have it diagnosed? I just dont know if this is from a deterioration of tissue or actual scar tissue forming.. Thats what peyronies is right? The onset of severe scar tissue forming causing a bend? And did yours start off with pain where the bend started to occur? Thanks.

Hmm, was also thinking this started about 5 days after I got my injection for the ultrasound. Im assuming it was caverjet? Maybe this was the reason. Sorry to go off topic.

[Mr.Friend Senior MemberPE Gym Editor Find all posts View Profile Close Mr.Friend]

Friend, did you go to a peyronies specialist to have it diagnosed? I just dont know if this is from a deterioration of tissue or actual scar tissue forming.. Thats what peyronies is right? The onset of severe scar tissue forming causing a bend? And did yours start off with pain where the bend started to occur? Thanks.

no -pain. however, i very very very very very slight pain, if I beond it in the other direction of the bend that occurs now even when flaccid. The other day I ejculated, and took a piss later, the curve of my flaccid dick was about 50 degrees to the right. It has kept becoming more and more prevalent. I am treating as peyronies. And a few times I swear that I can feel plaque in my erections. mild but there

[obitoo Banned Find all posts View Profile Close obitoo]

Regarding the curvature: I know for 100% certainty that I never had it prior to hard flaccid. And it seemed to appear a few days in. I believe it is a result of micro trauma to the inner chambers, and having the penis is a constant semi-rigid state makes it difficult to heal and probably causes it to take on a more dramatic curve. I believe it will go with the natural "hang" of your penis. My penis always hung to the left. Not curved, but hung. Almost everybody's hangs one way or the other. And so that extra little bit of hang to the left or right probably keeps your penis on one side or the other, especially when sleeping, causing it to heal with a curve. That's my hypothesis. Perhaps it's doing that even without any internal trauma, just from being semi-rigid for so long. Scans would be the only way to show scarring deep inside. I know that I can't feel any sort of plaques anywhere near the surface. I believe that if my penis was placed into traction quickly after this happened that the curve would have been prevented. In other words, if the emergency room didn't dismiss me and send me home with no care, I'd be in much better shape right now. I am considering taping a crayon to my dick or something, just to keep it straight. totally not kidding either.

[obitoo Banned Find all posts View Profile Close obitoo]

Form in progress...

Everyone, please take a look at the questions I have come up with so far. Do not bother filling it out yet until it is finalized and put on the website I am throwing together for us today.

CLICK HERE TO SEE THE FORM

Please give your feedback. Anything you want to see changed, added, removed? I think it is important to keep it as concise as possible, especially if we expect doctors to bother reading the reports.

Let me know what you think and I'll get this up and running today.

[Flanker6 Senior Member Find all posts View Profile Close Flanker6]

I use anti-inflammatories and those have worked pretty well for me

[SearchForTheCure Junior Member Find all posts View Profile Close SearchForTheCure]

Re: Form in progress

Obitoo -

Thank you for taking the lead with getting a form started. The form is very well done. Here are a few suggestions for you to consider:

* Minor point, but I would number the questions - it would make us easier to reference them.

* I would add a field at the beginning for a "username." I know the birthdate takes care of this to some extent, but it might be good to also have a username to identify us. I am envisioning a concise spreadsheet to circulate to the potential doctors, and I would envision the first column being a name or username - something to identify us other than by number or birthdate. I think this human element is important.

* you may also want to add an optional box for email address. That way, anyone who is comfortable providing an email address can be in touch when you circulate the spreadsheet, news, etc. Not trying to replace this forum, but I do think it would come in useful for anyone who is interested.

* I know it is your opinion that this is an injury and not a condition such as hormonal imbalance. I tend to agree with you, but I have not completely foreclosed a non-injury etiology. There are some firm-flaccid sufferers who can not pinpoint a specific injury or other event, and I do not want to alienate those sufferers. Likewise, I do not want to steer the doctors in any particular direction. I think it would be a good idea to leave the form more generic, perhaps by changing "injury" to "condition." For example, instead of the question "when did you sustain this injury," it could be three questions... 1) when did your firm-flaccid condition begin, 2) do you believe there was a certain event or injury that triggered your firm-flaccid condition, and 3) if yes to #2, explain in 10 words or less (this is addressed in part in your "how did you sustain this injury" question, which could be included here).

* In the "how did you sustain this injury" question, can you add new categories: "following intracavernosal injection" and "following priapism." Also, I see that this field only allows one response. Can you allow multiple responses?

* It would be good to have a question "how long have you suffered from this condition" (unless you plan to automatically calculate that based on the "when did you sustain this injury/condition" question).

* Under "what symptoms are you experiencing," you already have "testicular changes." Can you also add "testicle(s) hanging lower than normal"? I am experiencing that, and I have seen others report it, too. It could be useful to the doctors. (I'm still avoiding a prolonged discussion of my medical treatments/theories/etc., but I think the dartos and cremaster muscles may be involved, which would tie-in to the testicles hanging too low.)

* I don't know that I would include the question "do you feel you have been dismissed or rejected by doctors." While that is certainly true for all of us, the purpose of this project is to attract other doctors. I don't want to scare off a potentially interested doctor because they feel we have issues with our present doctors.

Thanks again for doing this. Hopefully we can get some more input from other sufferers over the next few days, and by the end of next week we can finalize the form and start collecting data.