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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Should I have surgery?  (Read 635 times)

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MiddleAgedMan

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Should I have surgery?
« on: April 14, 2022, 11:06:14 AM »

I was diagnosed with Peyronies about 3 years ago, at first I just got  small ventral indentation but then within a year I developed a dorsal plaque and my penis now curves upwards about 60-80 degrees (depending on how strong my erection is). Because of the large curvature, plication would make me lose too much length (from 15 to maybe 11cm) so I have been referred to a specialist on incision & grafting surgery here in the UK (he seems very reputable, has published many papers in the field and carries out a large number of procedures every year). Although I have fairly severe deformations (to quote my previous consultant who is a specialist in plication surgery), I can still have intercourse with my wife (which my consultant thought was quite remarkable given my degree of curvature). Probably this is because I am not very girthy so even with the bend there is room to accommodate me inside her (apologies if this is TMI). However we can only have sex in the missionary position and it can be difficult to enter initially, and occasionally I slip out and it is uncomfortable for my wife when that happens. She doesn't seem to enjoy vaginal sex that much anymore, but is happy with toys and other stimulation, though she admits it would feel better with penetrative sex if I were less curved. The question is whether surgery is worth the risk or not, given we can still have intercourse - I have read that some surgeons only accept patients who are unable to have intercourse. Now I trust that the specialist who will carry out the surgery is very qualified and likely to do as good as job as can be expected, but the risk of Erectile Dysfunction is of course still significant, as well as loss of sensation (though it seems this is almost always transient). I don't have any false hopes of getting back a perfectly straight penis (mine was always slightly bent anyway) but to be able to have intercourse without worry that it might slip and hurt my wife and also in other positions that would give her more pleasure is a strong motivating factor.

I'd be really interested in hearing the thoughts and advice from people who faced the choice of surgery and decided either way - why did or didn't you choose to have surgery? I should add I have tried traction and various other options (vitamin E, coenzyme Q) with no effect to speak of, traction might have worked if I had started it very early but I have struggled to put in enough hours and with my degree of curvature even in the best case scenario I would still end up with 40-50 degree curvature, so this isn't really an option.
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Diagnosed in 2019
initially ventral indentation, hourglassing w/ slight rightward curve
In 2020 I developed dorsal curvature, currently 60-70 degrees now stable.
Have tried traction (PMP), VED, heat, vitamin E, no change.

Tracygieck

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Re: Should I have surgery?
« Reply #1 on: April 14, 2022, 08:42:44 PM »

Pick your surgeon carefully. The VA did my surgery and transformed 7+ inches into 4 inches. (40% reduction in length)

I'm hoping to find a surgeon here that can fix what the butchers at the VA did to me.
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JustAGuy2020

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Re: Should I have surgery?
« Reply #2 on: April 15, 2022, 01:49:01 PM »

Hi MiddleAged - I was in a very similar situation to you (Peyronies Disease, significant curvature, hinging/narrowing, etc) and my wife and I went through much of what you are with yours.  We could have sex but it was limited.  I ended up having an incision/grafting which failed (in retrospect I probably should have chosen my surgeon more carefully).  I went to a world class surgeon for a revision and received a corrective incision/grafting and implant.  I now am fully functional (penis is completely straight) and happy (close to original size before Peyronies Disease) although I will never have a "natural" erection again.  My advice would be to think carefully and be absolutely confident in your doctor if you are going to consider incision/grafting alone.  I know you are in the UK but I would be getting second and third opinions.  The doctor who did my revision noted that my plaque extended across the midline of my penis and the original doctor only incised and grafted one side, which allow it to reattach and the curvature to return.  Given what I now know, I probably would have just gone straight to an implant with the first surgery.  In my case, the recovery time from the original surgery was similar to the second (doing JUST incision/grafting is not going to be much different than having an implant).  I believe the medical necessity criteria for implant would dictate that you have at least some Erectile Dysfunction.
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53 y/o, Peyronies Disease symptoms onset 2018, diagnosed 2/19.
Pentox failed, Ref. to U-Michigan, doppler showed 45D right curve and 80D dorsal with hinge effect.
Incision/grafting/plication surgery at U-M 9/20 (failed).
Implant and graft repair with Dr Levine 9/21

MiddleAgedMan

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Re: Should I have surgery?
« Reply #3 on: April 27, 2022, 11:55:26 AM »

So I went to see the surgeon on Monday and we discussed the options. On the plus side, I don't have any issues with Erectile Dysfunction, diabetes or other health issues, so my risk of developing Erectile Dysfunction and other complications is lower - he estimated 20% do go on to have post-op Erectile Dysfunction but thought I'd be more likely to have half that risk, so 10%. Still a pretty large risk, although Viagra is supposed to help for most. We also discussed plication, which I had ruled out given it would lead to too much shortening - based on the published studies of length loss I expect to go from a pre-Peyronie's length of about 15cm (6") to 11cm (4.4") which is a pretty big amount of shortening. Although the side effects and risks are smaller, he did say that there can be a recurrence also after plication, whcih would presumably lead me to have to go for an implant anyway. I also found out that I belong to a relatively select group of individuals with 70+ degrees curvature, apparently that''s like 10% of Peyronie's cases at most. Well, it's a club I'd rather not belong to, tbh... I'm really in two minds what to do here. We did agree that as long as I can have intercourse, it might be wiser to hold off on surgery given the risks. I told him I would give traction another go (more diligently) though he was sceptical that it would have much impact at this stage and given my curvature. However, speaking with my wife since I've realized that although we can have intercourse it is not as trouble free as I thought for her - although not painful once I'm inside, she finds the initial penetration uncomfortable and it does detract from the experience for both of us. I asked her if she would prefer me to have a short but straight penis and she said yes, although she hasn't been with anyone with such a short penis so it's hard to tell how she would feel about it in reality. My surgeon did suggest a plication but only reducing the curvature partially, to 20 deg, as a way of reducing length loss, though tbh I'm not sure that would make enough difference to the length to make it worth the residual curvature.

I'm really in two minds here - in some ways I'm feeling I'm considering surgery primarily for the sake of reducing discomfort for my wife, although my enjoyment of sex also hinges on her enjoying sex fully. I can't decide how willing I am to take all the risks that surgery entail given that we can still have intercourse, even if it is not as pleasurable as it used to be. I think I was also a little surprised by how disappointed my wife seemed to be by the outcome of the consultation (as in not providing more reassurance about the likelihood of a good outcome). Clearly, she is suffering from my Peyronie's more than she has let on and that almost feels worse than the actual physical changes to my penis. The surgeon is the only one doing this kind of surgery in my area (which is a large part of South East England) and does about 10 incision and grafting ops per year, and about as many plications; in total he estimates he's done something like 80 incision and grafting ops over the years. I know many here recommend surgeons with much more experience, but in the UK this kind of surgery is fairly rare and moreover on the NHS you can't really pick and choose surgeon - even if I did go private I don't think I'd find someone much more experienced.

Apologies about the rambling, I'm basically just trying to figure out what is the best way forward from here - I know a lot of the advice here is to go for an implant but it seems premature given I still have very good erectile function, but not ruling it out for the future.
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Diagnosed in 2019
initially ventral indentation, hourglassing w/ slight rightward curve
In 2020 I developed dorsal curvature, currently 60-70 degrees now stable.
Have tried traction (PMP), VED, heat, vitamin E, no change.

Afeb1996

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Re: Should I have surgery?
« Reply #4 on: April 27, 2022, 05:50:07 PM »

I don't intentionally mean to offend or anything, but when people do ramble and they put their thoughts and opinions out there, then they get what they get, other people's opinions and their perspectives on things, so I do hope you take this the right way. I haven't been here or replied to a comment in a long while. But this was too much. And I HAVE to be honest: I am disgusted and in shock dude. Why is this even a question???! Do you understand what plication surgery is? You're going to go under the KNIFE!!! You're already a Peyronie's predisposed individual!! You've ALREADY said THE SURGEON TOLD you there could be a reoccurrence post surgery!! It is a LOT more likely than written in the studies.

WHY ON EARTH would you consider this when you haven't even tried Pentoxyfline when SO MANY PEOPLE on THIS FORUM have experienced a DRASTIC CHANGE in their curvature from that ALONE in conjunction with VED??? Have you EVEN done hours and hours of traction with a device such as the Restorex??

Look what you said about your wife:
-  it is UNCOMFORTABLE for my wife when that happens (initial penetration— NOT PAINFUL)
- She doesn't seem to enjoy vaginal sex that much anymore!!
- I asked her if she would prefer me to have a short but straight penis and she said "yes" (LOL), although she hasn't been with anyone with such a short penis so it's hard to tell (really now..) how she would feel about it in reality.

Observe the cognitive dissonance
-  ...but to be able to have intercourse without "worry" that it might slip and "hurt" my wife and also in other positions that would "give her more pleasure" is a strong motivating factor.
- although not painful once I'm inside, "she finds the initial penetration UNCOMFORTABLE" and it does detract from the experience for both of "us."
 
You would be EXTREMELY naive if you really think YOUR penis could really somehow hurt her in light of everything above YOU YOURSELF wrote... but I know that's not what you REALLY believe... you wrote two things that in a way conflict with one another in a cognitive dissonance-like manner after all... perhaps the small portion of ego that you DO have (because I think you should have more) is telling you your penis could actually hurt this woman, when in actuallity, if your penis were to slip in that state you are in, PENILE FRACTURE would be an extremely likely OUTCOME for YOU!!

But you are too worried about HER and HER OPINIONS and HER PLEASURE that you don't even consider this and thus YOU don't EVEN see it— the danger!!

You've become a "my wife" guy!! What about YOU??? What about YOUR pleasure?? YOUR PENIS??? Why is THAT not your MAIN motivating factor?? Why are you NOT doing EVERYTHING possible to avoid losing 40% of your penis size— presumably after your second surgery which you've already said could be a likely outcome— when you are predisposed to responding with fibrotic tissue post-injury, post-trauma?? What do you think this surgery is?! TRAUMA!!!!!!!!! How could you even be on the fence about this? To get it fixed already because of pressure from the wife whether done verbally or behaviorally?

Again, you are TOO CONCERNED about HER and HER OPINIONS and HER PLEASURE that you don't even consider that if you WERE to slip that would mean a likely PENILE FRACTURE for YOU which means you didn't EVEN stop to think what would happen to you or your penis in that situation in light of where you are at with your penis!!! This is honestly feels GROSS to me because I've been in YOUR POSITION in a different context. It's like, DON'T LOSE YOURSELF MAN: Don't lose yourself in this marriage, where the only thing that exists is "HER" and "US." When did you ACTUALLY place priority on the "YOU?" ON the SELF. ON YOURSELF!! ON the "ME." ME— I. Say those things!! IT'S YOUR F^@$!ng DICK DUDE!! Don't be pushed to make a quick decision for her.

Pain is NOT the issue. It's discomfort!! The sex is uncomfortable Boring maybe. That's as bad as it will get as far as pain goes; as once you are in, well, you are in a "well" basically, as you stated. Do you reallyyyy want to make that situation you're going through ANY worse???????????? You're already using toys.... I mean I'm pretty sure if she isn't already, she is using toys that are bigger than you in some way, probably girth when she wants to feel "full" and even if not she is still needing something other than you to achieve sexual satisfaction. Is that the kind of life you want? Of having a romantic partner who is having to detach herself from the sexual experience when she's with you because she is NOT enjoying it, having the self-pleasure (which if she is not doing so already then she will eventually— and not to thoughts of you with larger dongs in her wether imitation dongs or real) she engages in be the ONLY instance in which she can mentally be fully there sexual??? Also, who or what will she be thinking about once this happens? You? Please don't be naive. You are in a state of cognitive dissonance. I know somewhere in there you know the reality of what's going on. YOU'VE WRITEN IT YOURSELF. It is CLEAR your penis is NOT going to "hurt her" in any way. It's just uncomfortable to her. Takes her out of the mood. the sex is becoming BORING. She's tired of this dude. You saw how she acted!! Are you really surprised? Please don't be naive!! Please don't be naive when she tells you she "wouldn't mind if you cut your penis and made it shorter." 

LOL. That's the "right" answer to not be perceived as a slut or to be perceived a certain way by you because she wants to avoid conflict.
Or so this problem can be solved already since she thought this was the solution to the problem. IT'S NOT!!!! And now that she sensed that, the TRUE PERSON comes out. THE SAME THING WILL HAPPEN IF YOU DO THIS SURGERY. You KNOW the reality. And has she done ANY research for you to find out what therapeutic interventions you should be seeking? Well if you DON'T KNOW about Pentoxyfline and haven't tried it or you haven't tried PRP, Stem Cells, Ubiquinol, Cialis (for the antifibrotic properties), or XIAFLEX WHICH YOU SHOULD HAVE DONE IN MY PERSONAL OPINION BEFORE EVEN CONSIDERING GOING UNDER THE KNIFE THEN I GUESS NOT. Because if she HAD, she would hopefully be knocking some sense into you a long time ago.

TO BE CLEAR I'm not saying ANY OF THIS so you feel negative towards your wife man. I'm just writing this so you WAKE UP to the predominant reality of the nature of the women statistically. We ALL need to grow as people!! What I see from you is that you need to be a better and more complete person— growing in the areas of loving yourself more and being more intrinsically motivated. It surprises me that you don't even seem to ever just have sex for YOURSELF. That is a SERIOUS problem man!! Basically, her ASSURED pleasure is REQUIRED for you to even be able to enjoy it. That's SIMP talk. Look that term up.

Seriously. How many women have you seen investigate for their partners on this forum? 1 percent? We are on a mission on OUR OWN for the most part. We are STILL alone. SO PLEASE DON'T forget the "ME." The "I." I MATTER. Do I want to have sex? Is this satisfying to ME? Is it good for me to continue to have sex in this state? Am I loving MYSELF enough to be putting MYSELF at risk with the sex I'm having or the type of sex Im engaging in, perhaps too rough? Who AM I doing it for? If it's not for myself then I shouldn't be doing it every time NOT for myself. Perhaps I shouldn' the doing that at all until my problem is resolved! She wants more; she wants it harder; at your expense? Send her to the curb!!

 Honestly brother rour writing implied to me that the only reason you are having sex is mainly to keep HER satisfied, all while you are increasing your likelihood of injury. Again, you are VERY prone to a PENILE FRACTURE right now!! That will DESTROY your life for a LONG time man. If you are going to be having sex in this state, BE PREPARED as to where you are going to go if that were to happen. You want to go to an ER that's performed the surgery before. Many facilities have not even seen a case like that!! Think ahead!!   
 

My surgeon did suggest a plication but only reducing the curvature partially, to 20 deg, as a way of reducing length loss..


OF COURSE YOUR SURGEON suggested plication!!! He's a surgeon that specifically performs this surgery!!! TALK TO SOMEONE  ELSE MAN!! It doesn't matter how many studies he's done on this BS surgery. GET AN IMPLANT before this thing. THE IMPLANT WILL CORRECT THE CURVATURE; if you get the TITAN COLOPLAST it has the potential ANECDOTALLY to INCREASE YOUR GIRTH. That will solve your other pinky in the "well" problem. YOU won't have to deal with your wife craving being filled up with a penis that's not yours which she will never tell you about unless she has already and you're a cuck which would mean you're too far gone to be rescued mentally. I AM SEROUS BROTHER. It will start with her detaching herself from the sexual experience during sex which is probably already beginning to happen. Look into Dr. PERITO, Dr. EID, and others. BUT ONLY AFTER EXHAUSTING EVERY OTHER OPTION TREATMENT THAT IS ON THE FORUM. JUST TAKE THE TIME TO READ HERE MAN IT'S NOT THAT DIFFICULT!! Get an hour or two a day or so to find out what your other options are. Have you heard about DMSO plus X and the user named "Melting?" Google it!! Read the study on DMSO and Peyronie's.

WORRY ABOUT YOU. AGAIN, my intention is not to make you feel bad about the situation with your wife. It's to get you to wake up to reality. You CAN prevent things from going downhill from here, but you NEED to take CARE of YOU. BE a little SELFISH. It's good!! IT WILL DO YOUR RELATIONSHIP GOOD EVEN. Going out every other weekend or going to the bars because the wifey wants this because the wifey wants that... YOU ARE BETTER THAN THAT... AREN'T YOU?

She wants you to get better during this time of distress that you are going through, then SHE is GOING to support YOU and she is going to take TIME to find out more information FOR YOU to get a treatment plan going for you that will revert your condition without F^@$!ng up your life and you guy's sex life. C'mon man you KNOW this is ridiculous!! YOU KNOW THAT. You've BEEN too much of a people pleaser at this stage in your life— at least in this relationship— and I can just tell from your writing. THIS IS YOUR PENIS YOU ONLY GET ONE!!!

Earlier what you SHOULD HAVE written was: I'm afraid to slip and potentially get hurt if it bends or if hitting her pubic bone causes a penile fracture in this case since I am highly predisposed to one which would require ME to go to the ER. You are too worried about HER and what SHE thinks, and not worried about yourself enough. This is a time of distress in YOUR life. YOU EXIST OUTSIDE OF HER. Practice having sex prioritizing how YOU feel. Do YOU like this? Center the communication that takes place during sex FOR ONCE on YOU!! ASSERT: "I like what you're doing. This doesn't feel right." Etc.

Don't ask. SENSE, gauge, determine and ACT. Remain AWARE of her pleasure, but make YOUR pleasure the PRIORITY. Don't tell me that I'm wrong in assuming that the majority of interactions that tend to take place during your sex life are focused primarily around her and what SHE is feeling— for example you ASKING her multiple times as you really try to read her body language and facial expression to make sure she's enjoying it because YOU JUST can't enjoy it otherwise, can you? That's pathetic simp-lke behavior that this disease is doing to you psychologically!!

DON'T LET IT DO THAT!! Because it's affecting not just you but HER AS A WELL— conditioning her to be the FOCUS during sex. STOP that!!

Say to yourself, you inner primal man: THE SEX IS FOR ME. Think that for once!! It's not about going rough or doing X. What do YOU want? What is good for you? What would be healthier for you? It might feel unnatural to think that way at first. That means you are doing it right. Honestly brother, try that mental exercise. If it feels unnatural, wrong, perhaps selfish as your doing it, you are doing the right thing. I hope my overall message can get you to look at yourself a bit and that you can see where I am trying to get at to help you because I honestly just want you to grow as a person and I see that you are way too far towards not worrying about yourself to where you are considering something SO drastic that could mess you up for life presumably because it's faster and would mean quicker more comfortable sex for her sooner at the cost and expense of your literal penis, sex life, and actual life potentially outside of her. Consider an implant AFTER exhausting all other options. Throw this surgery out the door if you haven't done the rest. There are other options out there— it seems you haven't even looked brother.

======
small example:

DR. GOLDSTEIN OF SAN DIEGO SEXUAL MEDICINE

Goldstein: Yes. And when we replace the androgen, we can see the histology go from fibrosis back to normal smooth muscle, which is totally amazing. We’re developing a new hypothesis—that endocrinologic impotence equals a reversible form of vasculogenic Erectile Dysfunction. This is a new concept, and we need to do a lot of work to develop it. Conceptually, however, replacing androgens re-establishes vascular integrity at some level. That’s a huge new role for androgens. Currently, when a man with Erectile Dysfunction comes to the office, most physicians perform a history and physical and then give him a prescription for sildenafil. But we do a PDE-5 test first. If he fails the PDE-5 test, universally, we give androgens. It’s phenomenal how abnormal their androgen levels are. They’re usually either significantly outside of the normal range or in the lower tertile or quartile—a very common finding in sildenafil failure.

Carson: Do you replace their androgens?

Goldstein: Yes, but not necessarily with testosterone. This is another example of how our understanding of androgen physiology has broadened. There are many people whose pathology isn’t only testosterone or isn’t even testosterone, but it’s really at higher levels of androgen, such as dehydroepiandrosterone [DHEA] or 5-androstenedione. So we measure each of the 7 androgens to determine the exact pathology.

It has recently been shown that you can enhance relaxation of coronary arteries by having adequate DHEA levels. A Rancho Bernardo study published in 1987 in the New England Journal found a higher incidence of heart attacks in men with low DHEA levels,2 and no one ever understood why. Then in 2002, an article in JACC finally showed DHEA receptors in coronary arteries. It uses cyclic guanosine monophosphate [cGMP] pathways to cause relaxation. There are also DHEA receptors in the skin. So now we know that androgens that we’ve never thought of as being important are involved in bone, skin, and cardiovascular tissues. This is an interesting area that’s just exploding.


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03/06/2018: Forceful-downwards [from the penile base] injury) > Affected PSL (Penile Suspensory Ligament) > Pelvic Floor Dysfunction > Erectile Dysfunction (tentatively assumed venogenic) > Peyronies (07/01/2018)

shrunken_dick

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Re: Should I have surgery?
« Reply #5 on: May 11, 2022, 01:13:41 PM »

Pick your surgeon carefully. The VA did my surgery and transformed 7+ inches into 4 inches. (40% reduction in length)

I'm hoping to find a surgeon here that can fix what the butchers at the VA did to me.

You should reach out to Rados Djinovic, Serbia. He can give you 2-4 cm length back with circular grafting.
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29 year old. I was taking 400 Mg spironolactone to treat hair loss. Xanax withdrawal in combination with spironolactone shrunk my penis from 6” to 4”.
I am seeking information about the sliding technique.

Henry1953

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Re: Should I have surgery?
« Reply #6 on: May 12, 2022, 01:43:12 PM »

I've had Peyronies for about 18 months. Right now I'm in the middle of a 12 week run with a Restorex Traction Device, and so far no discernible difference in my 30-35% left curvature. I'm starting to consider and research surgery, either plication or grafting. Not ready to consider an implant just yet.
My main question is how do I find a local urologist who is a dedicated specialist in Peyronie's related surgery and has accomplished an appropriate amount of surgeries with a high success rate? My current urologist is very informed and helpful, but for surgery I'd prefer to have the best surgeon my insurance will cover. Any advice from anyone?
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68 years old. 
Curvature started Jan 2021.
35-40 degrees to the left.
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