The Official Hard Flaccid Recovery Thread

[yeargh Member Find all posts View Profile Close yeargh]

Well my erections haven't been affected at all. I get normal erections, same size. I just have a bad EQ since always. There was just one moment in my life when I was like wow and I asked my girlfriend ''Is it just me, or my penis seems bigger at the moment?'', she said all surprised ''yes it does''. I guess I have about 85% EQ and had just once in my life 100%.

Otherwise, I just lost about 1 cm in flaccid length, sometimes 1-2 cm. I have almost normal sex life. Instead of having sex a few times in a row, now I just have sex once or twice in two weeks because I experience this uncomfortable pain in my penis for a few days after sex. I also stopped masturbation, because my penis hurts even more days after. It is just sex, about twice in 2 weeks.

[HFproblem Banned Find all posts View Profile Close HFproblem]

Have any of you guys seen this? I found it on a MedHelp forum.

One person says,
"I was talking to a person who knew someone with the exact same problem. She said that he had a hair sized Hernia wraping around some blood vessels in his penis. This caused a circulation problem which led to his penis being in a hard state while flacid. This was discovered after he underwent a ultrasound."

I just found this interesting, seeing as if someone claims that a doctor had found an exact reason for what causes this. The "hair sized hernia" could explain why no doctors can seem to find anything wrong. Maybe just wishful thinking that someone knows whats going on, but its an idea nonetheless.

[guitarded96 Junior Member Find all posts View Profile Close guitarded96]

Out of curiosity, anybody here find it extremely difficult to achieve an erection since having the firm flaccid? when im with mys girl its tough enough. When I'm alone. No chance

[obitoo Banned Find all posts View Profile Close obitoo]

Yes, pain got present about 3 days after injury and I have it for 10 months. If I press into my penis with finger on certian locations(when penis doesn't hurt by itself), I can also feel that pain. If I needed to pinpoint places that hurt most, I would say. Right side of penis under head, upper side of penis around veins (that is how I imagine it) and left side of penis. I wouldn't say that it is painful, It just brings discomfort.

Ditto. I'm about 10 days in and the pain is getting worse each day. Same type of pain as you. I believe there is a tear, or tears, inside the tissue and my sleep erections are making them worse. Could be scarring developing as well. If this were Peyronie's the plaques would be developing just below the skin on the outside of the shaft. I don't have any of that. My injury and scarring I believe are deep within the interior tissues of the penis. We probably should have had them put into traction the minute it happened to keep them straight, and do everything you can to not get erections. I notice the pain get much worse once I have an involuntary spasm of the BC muscles when I wake up, which causes the erection to enlarge and stretch even further.

I've just been taking Advil for the pain and it seems to get me through the day.

[obitoo Banned Find all posts View Profile Close obitoo]

Out of curiosity, anybody here find it extremely difficult to achieve an erection since having the firm flaccid? when im with mys girl its tough enough. When I'm alone. No chance

What is your numbness level across the dorsal (top shaft)? That would make it difficult. Also, any injury to the tissues inside would contribute to that as well.

[obitoo Banned Find all posts View Profile Close obitoo]

Have any of you guys seen this? I found it on a MedHelp forum.

One person says,
"I was talking to a person who knew someone with the exact same problem. She said that he had a hair sized Hernia wraping around some blood vessels in his penis. This caused a circulation problem which led to his penis being in a hard state while flacid. This was discovered after he underwent a ultrasound."

I just found this interesting, seeing as if someone claims that a doctor had found an exact reason for what causes this. The "hair sized hernia" could explain why no doctors can seem to find anything wrong. Maybe just wishful thinking that someone knows whats going on, but its an idea nonetheless.

That's very helpful! I will be sure to make sure they are looking for this. Again, I'm not leaving until we find something.

[obitoo Banned Find all posts View Profile Close obitoo]

So if it is an injury, Is there something that I can do? I know that doctors won't bother about hard flaccid, but is there something that I can do about that discomfort? I think that I have some kind of micro trauma in my penis tissue. What would be the best step to do ? Visit urologist?

Find the largest and most prestigious university hospital near you. Contact their urology department and ask for the chief. Tell them that you sustained an injury to your penis which is causing severe blood flow problems and pain and it's ruining your life. Tell them that your local doctors are too inept to help you and you desperately need their assistance. Tell them to give you a Doppler Ultrasound WHILE STANDING UP and to look for all of the things we've been mentioning; High Flow Priapism, Dorsal Vein Thrombosis, Micro Hernia, Deep Tissue Damage and Scarring etc. Do not leave until they find it. Tell them to look in your taint, up in the pubes area, everywhere. Don't leave until they find it. This is ruining your life. Take your life back and do not take no for an answer. They will help you.

[HFproblem Banned Find all posts View Profile Close HFproblem]

Out of curiosity, anybody here find it extremely difficult to achieve an erection since having the firm flaccid? when im with mys girl its tough enough. When I'm alone. No chance

Guitarded, I remember reading a post on another firm flaccid thread in the past saying that you had no problems with your erections. Has your condition gotten worse over time?

[guitarded96 Junior Member Find all posts View Profile Close guitarded96]

Yes sir. At first I had firm flaccid, but my erections and everything were normal if not amazing. Now it just, I don't know. I do realize the erection side of it could be my mind and the stress/anxiety of the problem. Who knows

[HFproblem Banned Find all posts View Profile Close HFproblem]

have others noticed such a decrease in EQ over time?

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

i have noticed an overall decrease yes. Also, no this is not peyronies. the hard flaccid from peyronies is different because it would only be hard at the site of plaque. trust me on this, i have recently developed peyronies but had the hard flaccid years before. so i know. I wonder how obitoo is doing at the doctor though

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

Mobilize

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.

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

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.

I'm in on this. I am going to tell others a ************* about this as well. I want this done as soon as possible. Also, I am certainly going to tell keepinfaith, fatalbazuka, newbert, and others. I do believe that if we get around 40-50 men together and work on getting more and more, that we can get their attention. CALLING ALL FELLOW SUFFERERS, it is TIME to get shit back! Take US back!!! We will also talk to those who used to have the condition or whose conitin has improved. We NEED you guys! IM IN lets do this!!!!!

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

I suggest everyone take a look at these cases and see if they ring any bells. I know a number of people got the left side dent and curve with this, I did as well. There is a documented case of it right here. Looks like a thrombosis of the dorsal vein with a mild tear of the interior tissue. http://www.ncbi.nlm.nih.gov/pmc/arti...00024-0042.pdf

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.

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

Alright wow this is certainly a giant step in the right direction. You are obviously very knowledgeable on the subject and your letter was very well written. i believe that if we all truly get the ball rolling on this thing we have a serious shot in getting some true recognition of the problem which in turn will give doctors incentive to get their asses in gear and start helping us regain our lives. I am absolutely putting our thoughts and ideas together on a single, organized spreadsheet. I will provide anyone wanting to share ideas with my real email address and even phone number so that we can get this going. I have an appointment with a very renowned specialist in Arlington, Tx next week to have a penile blood flow test to start narrowing down the search field so to speak. i apologize for my absence the last week or so but rest assured i have not wavered in my determination and i am still working very hard to have any and every test given to me that the specialist wants no matter the cost.

I dont want to sound corny, but seriously together we can make this thing happen. Obviously no doctor knows what this thing is or else it would be documented, so its like SearchForTheCure said, individual efforts are going to fall short every time. But, if we present a well written document as he just did with actual testimonials and cold hard facts there is just no way we wont be taken seriously. this needs to happen. this is our best chance at fixing this problem. please, if anyone wants to discuss this with me send me a message and lets this thing underway immediately.