At a loss

[Help100]

So I'm not doing well psychologically with the rapid progression of my symptoms and how it happened. My penis is basically dying; I've lost half an inch of flaccid girth in the last two months while actively trying to stop the progression. It seems to get worse every day. There's just loose skin where tissue used to be. The flaccid penis has like the top-to-bottom thickness of my thumb, even thinner around the head.

I don't have palpable plaque or much curvature or pain; my condition is more fibrosis, hard flaccid and ED than Peyronie's, according to the specialists I've seen. But they don't provide solutions, they contradict each other and themselves, and they insist they haven't seen symptoms and reactions to treatments like mine.

Two months ago I had a PRP injection with a specialist/implant doctor referenced on this forum. He wrapped a bandage around the base like a tourniquet for 20 minutes to let the PRP saturate all the tissues. I asked if that was the best idea because of the hard flaccid, pointing out that an interventional radiologist said I had venous congestion. The specialist dismissed that, said I shouldn't worry, and he did the PRP injection with the tourniquet. And while I didn't have any immediate reaction, two days later I lost more girth throughout the shaft, as well as erectile quality.

A month after that, as my symptoms kept getting worse, I tried a new VED with a pressure gauge. I struggled to get a good seal, and when I finally got one without losing pressure -- and I was able to pump enough to lift it off the cylinder -- I stupidly held it like that for about 3 or 4 minutes. I convinced myself that since it was at low pressure and that I wasn't feeling any discomfort, keeping a hard erection like that would be good for my ED. ... More loss in girth and erectile quality.

I told the PRP doc that, and he questioned what I was telling him, saying the actual PRP, injection or tourniquet would have no way of causing those symptoms, and neither would a few minutes of keeping an erection in a pump at low pressure.

He said my size didn't look bad. I told him that ever since the loss started, I had been taking measurements to confirm what my own eyes and hands were seeing and feeling. He said measuring my penis was nuts, even though he was the one who admitted he saw a difference between when I came to him early this year and now. So he won't believe me, he won't believe himself and he won't believe math.

This is par for the course for a year that has included an ultrasound tech painfully bending my erection down during an exam (causing injury), and another specialist leaving me with a post-injection painful erection for more than two hours, causing more damage. And more gaslighting and dismissing.

As you can see, it's tough for me to be concise when describing all of this, and now I face a new appointment with Dr. Levine in Chicago in a couple of weeks (I'm going to him based on reviews on this forum), worried how to get everything across, how to get all my questions answered, and more importantly, how to not get worse. My penis is so fragile at this point, I don't know how it'll respond to an erection-inducing injection for the ultrasound.

I'm at a loss. I'm struggling to treat my sleep apnea -- which must be having an effect on whatever is causing the size loss -- and I'm struggling to get doctors to help me with what I think is a pretty urgent problem of a rapidly thinning penis. I've read the survival guide and am trying to put my anxiety in perspective, but I have to imagine most guys on here would be anxious if they had such an aggressive progression.

[Sonic]

I have the same problems as you. My curve is mild but I have progressive Erectile Dysfunction and definite loss of girth. It feels like it has "stabilized" but I'm not 100% certain. I've heard many good things about Levine so I think you are in good hands.

Honestly if you keep losing girth agressively like this then an implant might be the only solution. I would personally keep using the VED carefully. It's better than nothing.

5-7mmhg is a good pressure to aim for.

[IwillbeatPD]

Sorry to hear about all you've been through. Unfortunately it seems some people's symptoms are mild and slow and others are severe and progress quickly.

In my case, I went from no symptoms to an implant within one year. I did everything possible to get better in that year and nothing worked. However, I do believe Restorex, VED, tadalafil and daily prevented size loss. I think if I just stopped getting erections I would have experienced size loss prior to my implant.

You're off to a good start seeing Levine. I hear he's good. Good enough to properly evaluate you and provide a recommendation.

As Sonic mentioned, in a worst case scenario you could get an implant and put all of this behind you. I personally opted for an implant because I wanted to take action opposed to watching my dick get worse and worse with time.  

[Mikel7]

I'm sorry you have had to go through the frustration and pain with this disease. Dr Levine is my Dr and he has a great personality. He should give you a correct diagnosis and a treatment plan. Be sure to write out your questions and concerns before your appointment. Write down what he says and don't be afraid to ask any and all questions.

[Help100]

I would personally keep using the VED carefully. It's better than nothing.

5-7mmhg is a good pressure to aim for.

Here's one part of this that's so disconcerting. I only pumped to about -3 mmhg. I made sure there was no pain. I got a cylinder that's a little bit bigger than my maximum width. And I still did major damage.

So when you say it's better than nothing, you get why I'm not even sure about that at this point, right? Not trying to critique your advice or anything; I appreciate the support. But this is why I feel so hopeless. It seems any basic things I could do to help myself end up hurting.

And that's my hesitancy about an implant too. Even with a low-infection, high-volume surgeon like Eid or Hakky, I don't heal well and I already have hypersensitivity in the glans and other areas of the penis where I lost size. So it seems like I have a higher probability of complications.

There has to be a physiological reason why I had such a dramatic effect from the pump, why a two-plus-hour erection for an ultrasound would have such a dramatic effect, why my length and width have either stabilized or improved, but the top-to-bottom thickness of the corpora has shrunk so much. Is it realistic to think Levine will be able to answer that when so many specialists who have done ultrasounds on me have basically said, Duh, I dunno?

Sorry to hear about all you've been through. Unfortunately it seems some people's symptoms are mild and slow and others are severe and progress quickly.

I think if I just stopped getting erections I would have experienced size loss prior to my implant.

I get what you're saying about the variability of this disease, but in my case the progression really ramped up after specific events and treatments, i.e. minor injuries/PRP injection, etc. ... And I've been taking pentoxyfilline and daily Cialis and still losing size rapidly. I was getting hard nighttime erections until the PRP, and it's not like I don't have any blood flow at this point as I keep taking the medicine.

The fact the girth loss is in the flaccid state makes me really concerned. Like I said, it's loose skin where the tissue used to be. Any chance that's reversible without an implant?

Sorry for all the questions. Like Mikel said, I need to write these down succinctly and present them to Levine.

[Sonic]

That sounds really strange. So you pumped up to 3mmhg and held for around 3-4 minutes if I am not wrong?

And this caused major damage? That should honestly not even be possible.

It sounds like your penis is in some form of continuous inflammatory state/process.

Sadly you won't get much advice/help on here as this needs to be looked at by a true proffessional and I feel your pain because even most of the times when we go to urologists we end up feeling hopeless because most of them are so unhelpful.

[Hawk]

First, a reminder.  This is a board for discussing psychological aspects of Peyronies Disease, meaning questions and responses on how to cope and flourish in spite of Peyronies Disease.  It is not a board for discussing treatment methods.  We have dozens of other boards for that.  I might move this topic to another board.

Help100, I have read tens of thousands of posts over 20 years and I used a VED for more than a decade. I also have sleep apnea.  There is nothing magic about a VED.  It lowers the pressure outside of the penis so it fills with blood.  As long as the pressure is applied gradually, the vacuum is not extreme, and the period you hold the erection is not excessive.  It is NO DIFFERENT than a natural erection.

What you are describing seems so strange and so extreme I have to ask if you have had any mental health issues such as Obsessive/Compulsive Disorder, Body Dysmorphia, or Hypochondria, etc.  If so, it is nothing to be ashamed about.

If you have no such history, it is difficult for us to help because not only is this not typical Peyronie's Disease, but it is not even within the realm of more extreme cases of Peyronie's Disease.  If you have some very extreme, highly inflammatory Peyronies Disease, it is very strange that some trained medical professional (you have seen several) has not recognized your problem, much less diagnosed or treated it.  I am concerned that Dr. Levine will not have the patient, bedside manner, and understanding I think you are looking for.  I would first consider a video consultation with Dr. Trost unless you live within close driving distance of Dr. Levine.

At one point, you state, "I don't have palpable plaque or much curvature or pain; my condition is more fibrosis, hard flaccid, and Erectile Dysfunction than Peyronie's, according to the specialists I've seen. But they don't provide solutions, they contradict each other and themselves, and they insist they haven't seen symptoms and reactions to treatments like mine."  Who told you this?  What distinction did they make between "FIBROSIS" and "PLAQUE"?  Those are just different terms for scar tissue.  I can not imagine a medical specialist saying, "You don't have plaque, You have fibrosis"??

I am sorry if I am not being helpful. This sounds very unique among 150,000 posts.

[Help100]

I think you really hit on something here, which is why I posted in the Psychological Component board and why I've come to a forum like this. I find myself in a situation rife with subjectivity, when I'm seeing very objective data every day.

So I put this out to you and other fellow patients reading this: Imagine you have a rare presentation of an already rare condition. You have no history of mental illness, dysmorphia, etc. And your penis starts shrinking. And then your erections start to get worse. And it's not stopping. And everything you try makes it so much worse. But you're being told by doctors and other patients that what you're describing either can't be happening or that something sounds fishy.

And at first, a doctor who's seen you previously acknowledges the size loss, says Peyronie's is a terrible disease and that he's seen guys shrink down to the thickness of their pinky. He says he doesn't feel any plaque when examining the flaccid penis, but says upon checking out the ultrasound, you have corporal and tunical fibrosis.

And after you have this extreme reaction to PRP and pumping, you go back to this doc. And now he claims he never said you have corporal fibrosis, but fibrosis "around the corpora." Not "intracorporal fibrosis." And then he backtracks on the size loss, and says maybe you're looking too much into it. So you say, Forget that, I don't want to get caught in subjectivity, let me provide objective data like measurements and photos.

But he completely dismisses the idea of measurements, and after looking at a photo from several months ago and one now (which had a difference of .75 inches of circumference, which is extreme), he says that they look the same. I mean, we're talking about top-to-bottom girth, so it's tough to capture the difference when you're taking photos of your penis from the side.

Are you supposed to say, OK, guess my eyes, hands and tape measure are deceiving me, I must be nuts and this isn't happening (even though he initially said it was)? And he literally said he saw fibrosis on the ultrasound.

This is what another doctor wrote me when I asked for clarification about what the hell was happening to me:
Fibrosis is a combination of tissue death and replacement with scar tissue. This can lead to both girth loss and/or loss of length. Sleep apnea leads to increased hypoxia which means tissues aren't getting optimal oxygen and blood flow.

So when I asked what can be done about it, I'm told either experimental treatment like Shockwave and PRP (both of which made me worse) or an implant, which I think I'm right to be hesitant about with my chronic inflammatory state, body hypersensitivity and established inability to heal properly.

But those suggestions came after a lot of "I don't know" and deflecting. I mean, six months ago, even with the sleep apnea, I was losing size at a much less rapid rate and I had solid arterial flow, according to ultrasound. Then a month later, even with rigid erections, I had terrible arterial flow on a new ultrasound. And then after Shockwave, all of a sudden worse erectile quality. How is that possible? "I don't know." What can I do to stop the progression? "I don't know. More Shockwave? I don't know."

There has to be something I can do to stop this from shrinking down to my pinky. There has to be something I can do to have a better understanding of my condition. Maybe if I had that, I would have had someone saying, In your specific case, PRP is contraindicated. In your specific case, don't -- under any circumstance -- pump to full erection, even under reasonable pressure, or hold for a certain amount of time, because you have a type of scarring process that will lead to more damage than the typical patient.

And yet I feel like every conversation I have about this with doctors or fellow patients focuses on the validity of what I'm describing. I guess I'm asking (after giving me the benefit of the doubt that what I'm describing is true) .. how would you get the answers and solutions you're looking for?

Sorry for another long post. Thanks

[Sonic]

If pumping worsened your condition as bad as you described, even with such low pressure then it seems the only thing that will really end this is an implant. Shockwave is a scam and PRP really won't do much, at best PRP will only give temporary effects.

If you feel like the doctor keeps backtracking on what he says try switching to another. He/she does not sound reliable at all.

[Hawk]

Your results from shockwave and PRP are no surprise.  That data shows that neither are effective and sometimes detrimental so what you experienced with those is right on par.

Your perceived worsening with one few minutes of VED, however, is epic.  Obviously, forum members cannot out-perform a truckload of doctors.  I can only tell you what I would do.  I would:

1. Study and follow a strict anti-inflammatory diet and consider anti-inflammatory meds (orally or topically).  
2. I would use the VED gently and consider traction.
3. I would get a prescription for 25 mg of Trazadone at night (with a light snack) for night-time erections (NTEs). You can either get it prescribed for sleep (easiest) or for NTEs
4. I would try some heat and some cold therapy
5. I would track very objective measurements of length and girth and record them.

[Help100]

When you have a chance, just a final question before I see Levine: The more I read on this forum from people like yourself or Monty, for example, it stresses only doing minimal holds in the VED for a matter of seconds. Wouldn't that mean you think longer holds are dangerous? So I just wanted to clarify why it's so unusual that I'm saying I did damage from holding for 4 minutes.

I don't know. I guess I'm trying to understand the physiology and what might have happened, so I can use that info to address the current reality. My apologies again for bothering everybody. I just can't believe how much tissue I've lost/am losing, and since it's in the flaccid state, it feels like maybe that's gone forever?

[Hawk]

In theory, pumping repeated medium or light erections, each for a few seconds, pulls in lots of O2-saturated blood supply.  That, however, is very questionable because it assumes you are not pulling in blood from the veins.

To suggest that pumping a vacuum on a VED and holding it for 20 minutes would do damage, you would have to at least make a suggestion for a possible source of or cause of that damage, and there is NONE.

Can the blood become depleted of O2 and starve the tissue in 30 minutes or less?  Answer: NO WAY!

Can blood engorgement as hard as a robust natural erection damage or tear the tissue or burst capillaries more than a robust natural erection? Answer: NO WAY!

MANY men with Peyronies Disease, including me, use a VED for erections which means they pump their penis fully rigid as a good natural erection, trap the blood with a ring, and have sex for extended periods of time.

There is NO vehicle or process by which pumping to a natural erection level or less for a few minutes without a ring could damage the penis.  IF that VED session did any damage, then a natural erection would have done exactly the same thing, and no one has ever heard of an erection being bad for Peyronies Disease.  A lack of erections is bad because it allows penile scar tissue to contract (resulting in size loss), and it starves the tissue of oxygen, setting up an unhealthy environment.