Not bad enough for an implant

[samsung]

What is the general consensus on this?

I posted in another area about this. So sorry if this is redundant.

In a nutshell was told I am not a candidate for an implant. Erectile dysfunction not bad enough. Deformity not bad enough.

Makes no sense to me to be made to wait in purgatory for it to get bad enough. Which of course it will. And it is already bad enough. I have a deformity. I can't have a deformity. Others maybe able to have deformity. But I can't.

My plaques are calcified. There is no hope for it resolving. This curve is not going anywhere. So why should I be made to suffer indefinitely? I want an implant and an end to this right now. Tomorrow. Today. In 5 minutes. Who are they to tell me to suffer for years and years and watch my pecker like a hawk and obsess like an animal night and day?

[Hawk]

Samsung, I remember some issues you face but I have trouble keeping up with all my family member's lives.  We have 16,000 members here, thousands that post.  If you put more specific info in your signature like age, symptoms (bend, erection issues), things tried, relationship status, etc.  It would help to not get your background mixed up this the other thousands of posts and members.

It would save you time answering questions and our time asking them.  It will get you more accurate responses and it will enable those that you help to understand your experience.

If you want to go beyond that you can write an entire history on the "Our Histories " board and link to it in you signature as I did.

[samsung]

Sorry. Will fix signature momentarily.

-44 yrs. old.
-Have not had relationship for over 20 years due to mental illness.
-Started experiencing sharp pains, like a wasp stinging the head of my dick @6/2018.
-Upon reflection, have been saying things for a few years prior to this that "I feel like my dick is shrinking" and always attributed it to the fat pad/ weight gain. Also recall saying things like "my dick is turning darker color." But I never had any pain, loss of function, loss of observable erect size or deformity until after this "wasp stinging" incident.
-Since 17 years old, never had morning wood. Never had nocturnal emissions. Never even really thought about sex unless I was masturbating or actually having sex. Always had normal sex and relationships up until the age of about 22. Just assumed I was one of those people who didn't have nocturnal erections and it was never an issue because it didn't affect anything.
-August 2018, saw a GP and he examined and said I probably had peyronie's. At this point I had a very small palpable plaque. My father advised me it was not a big deal and to focus on other stuff. In fairness, there was a lot of stuff to focus on.
mid-December 2018. Formally diagnosed by urologist. Urologist prescribed "wait and see."
-December the curve started developing, but did not get any worse for 7 months. Pain upon erection.
-One to 1.5 months ago. Flaccid pain. Torsion of shaft. Left hang while flaccid. Curve worsened. Size smaller. Head smaller. Thinning toward top. Hourglassing. All came out of nowhere. Started traction immediately. Started reading on this forum.
-Had doppler. Injected bimix. Couldn't attain erection because of people watching. So he did it flaccid. Said I had moderate calcification and minor venous leakage although I have since learned a flaccid ultrasound is not a good way to diagnose venous leakage, so that is still an unknown.

----  I have approx. 30-40 degree curvature. I don't know but as far as I can tell have lost 2 inches. Started with 7.75 inches (measured at 17 years old-but certainly not proper scientific measurements so I have no idea how one could know precisely how long one was prior to peyronie's). I measured it a month ago and it is just shy of 6 inches if I practically pull it off. And that is taking the curve into account, not straight out from body. So I can only measure future losses.

-Urologist yesterday said with a 30 degree curve and no impactful erectile dysfunction that in essencene l would have to learn to live with it.

He said he would do doppler and xiaflex, but he thought they were both risky and pointless.

Most people on this board have hope. Because without calcification you can fight this.

I believe that I might be able to gain some length. Possibly some girth. But I doubt it because nobody can teach me how to use these devices properly and I don't think I am doing either VED or traction properly.

I am on cialis, arginine and do both VED and traction. I can't take the other supplements like Pentox, etc.

I do not accept sitting here and waiting for it to get worse. And I do not accept "living with it." All other people here get to fight this with surgery or are not calcified and can correct it. And even if they can't they have the ability to be able to conceptualize what acceptance even is. I do not have this ability. I am totally unique. I am not allowed to fight this. Because it is calcified. Curve will go nowhere. And now I am not being allowed to get an implant. So only option left really is to smash it with a hammer until it is bad enough to require an implant because I need this to be over one way or another. At this point I don't care how I arrive at that destination. Because my obsessing is 100% not like your obsessing. Mine is 16 hours a day. I don't think other thoughts. Peyronie's and I cannot exist together in the same body and no amount of psychiatry or speech from anyone will ever change that fact. Please do not offer advice as to how to accept this. That is a dead end. I've seen over 70 therapists so please don't suggest that. I've been on 70 different psych. drugs, had ECT, blah, blah, blah. Waste of time. They will cure that about the same time as they cure peyronie's. After we've all been dead for about 50 years. And that is an optimistic outlook. Dr. Atala's tissue regeneration will come on line about the same time as humans have established their 17th Mars colony.

Sorry. Rant over. Will talk to Dr. Eid. on 8/12. Already know how that will go but will talk to him anyway.

[Hawk]

Sorry. Rant over. Will talk to Dr. Eid. on 8/12. Already know how that will go but will talk to him anyway.

How will it go with Dr. Eid ?


Tell us specifically about your Erectile Dysfunction as it currently exists with and without oral Meds
Can I have an erection for penetration without pills? -
Can I maintain it? -
Can I have an erection for penetration with pills? -
Can I maintain the erection with pills? -  

[samsung]

I think Dr. Eid will listen. I think he will be caring. But I think it likely that he will concur with my other urologist in that it isn't bad enough to warrant the risk of an implant and that an implant should be a last resort in my case solely due to its permanence and the fact that I am 44 and not 74. I know that if I badgered him from now until doomsday he would probably agree to do it if it impacted me enough. Or maybe he wouldn't.  I truly don't know. But I do know he will know I am crazy. And he will know that making decisions in this state of mind is a bad idea. But I just can't stomach the idea of waiting around to lose more inches for no reason.

---As far as erectile dysfunction, I get what I would term a fairly good erection. Not 100% like a few years ago, because the head does not fill out now nearly as much, but definitely stiff enough to do the job. Since the cialis I have been getting nocturnal erections but sort of unpredictably. And I get morning wood, but also unpredictably.

I do not need to take cialis to get an erection. And I can maintain it so long as the visual material is in front of me. Possibly the cialis makes the erection a bit harder, but not extremely noticeable in my opinion. When I fist started taking it, yes it was harder, but I don't notice so much now.

[curved]

Not sure what Dr Eid will say in your case but in mine he agreed an implant was the best route and I did not have significant ED.  I did have significant plaque but he did not know that until the physical examination.  He may request you send him some pictures from different angles to see the extent of the Peyronies Disease.  My sense from him was to also consider what impact this was having on intercourse.... meaning could you have successful/enjoyable intercourse in your current state.  If so then a conservative approach.  In my case while intercourse was possible it was not satisfactory and that coupled with my curvature and narrowing of the shaft led him to the conclusion that implant was the best course of action.  Again, don't know what he will suggest in your case but I would think he will definitely consider the impact the current situation has on your physical enjoyment.

[Hawk]

I think Dr. Eid will listen. I think he will be caring..... But I do know he will know I am crazy. And he will know that making decisions in this state of mind is a bad idea.

I don't think you are crazy.  Maybe you should not view yourself as "crazy".  You may well have psychological issues that need some professional help or you might have some biochemical issues that need medication or a combination.  That does not mean you should not worry about having a working penis.

[Werther]

---As far as erectile dysfunction, I get what I would term a fairly good erection. Not 100% like a few years ago, because the head does not fill out now nearly as much, but definitely stiff enough to do the job.

Then why would you get an implant if I may ask?

[samsung]

Because I have a curve. And I am incapable of accepting it because I do not understand the concept of acceptance because me and emotions live on separate planets. And it is shorter and not as wide and it hurts and the new ventral plaque makes it feel like someone is pressing their thumb into my urethra. And it has some torsion in the shaft to the left and hangs left when flaccid and a tiny bit when erect. And the head is nowhere near as full as it was.

And this makes me absolutely batshit nuts.

And I am scared of it getting continually worse. And I am sick of my penis taking over my life.

My main reasoning is that grafting/plication are a waste of time. You will lose length and peyronie's can come right on back. Honestly don't understand why anyone would do these surgeries. No offense to those that have. I am sure you have solid reasons for doing so.

And any supplements once you have a calcified plaque are mostly a waste of time. And traction and VED, although possibly useful for gaining back a tiny bit of length and girth are largely a waste of time. Because they will not get rid of a curve if a plaque is calcified. And xiaflex may help, but could even make it worse or if it does help, will probably only help a little.

An implant is final. No more curve. No more changes. I will know to some degree what tomorrow will be like. Even if I get an infection or erosion or literally anything else, it will be over one way or another. No more wondering.

They will not cure this disease for another 50 years. I do not intend on haunting this forum for even another 1 year.

[Werther]

I know there's no certainty but it looks like it's not that common that peyronie's will show up again after its first appearance. It doesn't look like to be the norm and besides, if it happens, an implant isn't going to stop it neither.

If your case will be like most of the ones reported in literature and by people (i.e. you won't get any new flare ups) then you won't need to get implanted in order to solve your curvature. If you're willing to access surgery, nesbit, stage or grafting should do the job without getting you to lose the spontaeinity of natural erections (if the surgery goes ok obviously).

Considering that you could always get worse - something that you don't exclude (legitimately IMO) based on your words - I would get implanted if I was in your pants only if I actually got to the point where I can't get an usable erection, no matter what. It's not like that you're precluding yourself this option if you don't go with it right now: you can always do it later when it's absolutely necessary. I just consider foolish to rush people into these choices when they're not necessary at all (let's remember that a penile implant is designed mainly for ED and if there's none but there are other problems, there are lots of other reliable strategies in order to get those other problems sorted out). I might be petulant but I'd like to stress out that a penile implant is not reversible: yes, they'll tell you that you could always get those cylinders removed but tell me what good would your penis be after you got them in and then you had them removed.

These are just my two cents on this subject.

I just wish you the best whatever your choice will be.

I do not intend on haunting this forum for even another 1 year.

I completely agree with you on this point. I just wish this disease was easier and we would not even need a board like this to talk about it. This is just depressing as hell.

[SW01]

Not sure where you get your information, but peyronies does come back and back and back and gets worse normally. Studies do show that. As plaque gets harder curvature gets worse. You can counter it somewhat but the curve potentially gets worse and worse. The surgical procedures are available but fail or do not work a lot of time. You are after all talking about stitches which deteriorate or pull out. They will normally shorten you for sure. At least an implant will usually straighten you and keep whatever you have on day of surgery.

I have seen several doctors. All agreed with peyronies an implant is the one solution that works. Not one suggested nesbit or other surgical procedure or xiaflex injections. I asked if the injections could help or make peyronies worse. They just looked funny and told me if I wanted them they could do them.

Once implanted, no more curve. You have a flare up, still no curve, plaque, keep pumping plaque stretches. Your length is your length day of implant and normally just gets better.

Your worst option is letting time go by with peyronies. It normally gets worse. An implant is a medically recognized solution for peyronies period. My insurance stated implant will be approved for peyronies or other medical related ed.

I agree right now there is no going back. If I was going to wait and hedge my bets, I would bet on implants getting better.

The longer you wait with peyronies in getting implanted, the shorter you will be. You can bet on that.  

[samsung]

Guys, I can't take this any more. Only one answer is correct. Either I should wait or I should not wait. I honestly feel like NeoV and Sw01 should fight to the death and I will gladly pick which direction to go in. You have 2 camps on this forum.

1. Fight this at all costs to avoid an implant.

2. Get an implant right now before you lose another millimeter.

And then you have all the worthless doctor's opinions. I just want to walk off a building.

[Hawk]

I agree with everything SW01 said.  I have not known of anyone that had Peyronies Disease issues after an implant.  If an implant can straighten a significantly bent penis it can certainly prevent one from bending.  Even if you formed scar tissue it would form stretched which means it would not contract when flaccid.  Unlike a totally natural penis that can draw up at times and allow shortened scar tissue to form, an implant prevents that.  Even with a plunge into an icy lake, you will never shrivel up again.

I will also say that after 15 years running this forum and posting thousands of posts and reading most posts here I have to sadly say, I know of no other board on this forum that approaches the universal joy expressed on this board. Think about that.   Is it always perfect, NO.  Is it for everyone, NO.  

[samsung]

I think I have come to a semi-solid decision.

1. Talk to Dr. Eid on 8/12
2. Wait 3 months
3. If shorter or more curved, call Dr. Eid back

In meantime, get doppler in October, reassess. Get Xiaflex, see what happens.

Also in meantime, continue VED, traction, heat, supps., and try and get my mind a little bit more aligned.

I can't just jump into something I could potentially regret forever. And I also realize I could regret not doing it sooner. But I know me. I won't be able to live with the implant either. Rock. Hard place. But need to wait.

[Hawk]

Samsung, that sounds like a good well thought through plan.  Developments one way or the other could call for adjustments.

Implant surgery is not a minor recovery in the first 2 weeks.  The initial week often causes a "What have I done" moment and even the rigors of cycling can be a challenge for a couple of weeks after that.  If you decide on an implant later, it is important that you are up for the rigors of that recovery.

You also mentioned that you have not been in a relationship for 20 years due to mental health challenges and if I remember it seems you suggested you were not overly interested in sex.  If that is correct, are you considering the implant in the hopes of changing that or is it all over a personal dissatisfaction with your body?  I am a little concerned if it is just a personal dissatisfaction with your curve that you might focus on elements of an implant that you do not like such as the pump or your penis in its deflated state, or glans under inflating.  Often times a person's dissatisfaction with their body has more to do with their frame of mind than their body.

[samsung]

This is not possible for anyone on this forum to understand so I will keep the psych part brief.

Any relationship I have is a relationship with myself. So to answer your question, it would be about dissatisfaction with my body and not about whether I am pleasing a partner. It is more about, for lack of a better concept that I can easily relate here, my inability to exist with this situation. If I got an implant it would be so that this situation is over.

The rigors of post-op are not lost on me. I am not sure if it is even possible for me given my drug history. It will be a huge consideration.

And I will definitely obsess about the pump, the glans and everything else. Mostly I am guessing I will fixate on the "unnaturalness" of it and the "unfairness" of it. There is no really winning way out here. Like choosing between being locked in solitary confinement or going to a death camp. I guess I am hoping to find out if they have better food in solitary.

[Hawk]

This is not possible for anyone on this forum to understand so I will keep the psych part brief.

... it would be about dissatisfaction with my body ... And I will definitely obsess about the pump, the glans and everything else. Mostly I am guessing I will fixate on the "unnaturalness" of it and the "unfairness" of it.

I won't pretend to understand, and I know that what I am about to say might be both simplistic and at the same time obvious, but it seems that working on your fixation or obsession might be at least if not more productive at bringing you peace than working on your dick.  Certainly, you can do both at the same time but it sounds like you are not likely to find a solution that focuses solely on your penis.

Best wishes for the best possible outcome.