One Man's Experience with Peyronie's and Penile Plication

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

Book Chin

Hi All,

So since being diagnosed last year with Peyronie's, I have made much use of this forum, both to educate myself and to seek comfort in identification with others who are also struggling with this disease.  So I figure it's only right that I give back a little and post about my own experience, specifically as it relates to my choice to pursue the surgical option (16-dot tunical plication, in my case).

So, to give a little background, since as far back as I can remember, I had always had a slight leftward curve when erect, maybe between 5 and 10 degrees.  This was likely congenital.  It never pleased me on a cosmetic level, but it didn't cause any grief between the sheets, so I didn't pay much attention to it.  In the last two years, however, that curvature increased dramatically from a few degrees to 40 degrees.  There was no "event", like a fracture, that I could point to that clearly caused this increase, but my theory is that years of sex and masturbation with a slightly curved penis caused repeated micro-traumas to the already-curved side of my penis, forming scar tissue and resulting in Peyronie's plaque formation.  (As a side-note: if my theory is correct, this may be a good argument for addressing slight congenital curvatures surgically beyond mere cosmetic concern.)

Anyway, after spending many months taking vitamin E, L-arganine, and Pentox with no results, I decided to look into more invasive methods of correction.  I'm 26 and unmarried, and the prospect of biding my time over the course of several years to see if somehow my body would miraculously fix the issue on its own did not seem like an option.  So I looked into Xiaflex.  After a bit of research, I concluded that Xiaflex was way too expensive and foolishly dangerous.  My urologist (and eventual surgeon), Dr. Roger Riechers in Hartsdale, NY agreed and discouraged me from pursuing that option, despite the fact that he is trained in administering Xiaflex and will do it if a patient insists.

So, the next obvious option was tunical plication, which, as I understand it, is the safest, most reliable method of surgical correction for penile curvature.  I believe the typical criteria for being eligible for this type of surgery is a simple curvature up to 45 degrees, decent erectile length, and the ability to have and maintain good erections.  I fit the bill and so elected to have it done.  I had the procedure done in May of this year.  I had two sutures placed on the right side of the tunica.  After waking up from anesthesia, the doctor told me the operation was a great success and even showed me a picture of my perfectly straight (albeit slightly ravaged) penis taken in the OR.

Within two days of the surgery, however, strong nocturnal erections caused one of the sutures to snap.  A couple days later, the second suture, which now bore all of the force of erections on its own came undone, and my curvature completely returned.  The procedure was a failure.  While Dr. Riechers is an excellent, well-regarded urological surgeon and has performed this procedure countless times, it all boiled down to his having used the wrong type of suture.  He used a 3-0 monofilament, which was not strong enough to withstand the force of my erections.  My guess was that he had never performed this procedure on someone my age, and that his typical surgical patient was someone with somewhat diminished erectile quality, in which case the smaller suture was adequate and preferable in terms of leaving less prominent/palpable permanent suture knots.

Regardless, I elected to wait six months to repeat the procedure, this time with 2-0 braided sutures.  Nine days ago I went back under the knife.  This time, everything appears to be going swimmingly.  I've had strong erections and nothing has snapped or slipped so far.  My penis is straight, and I've only endured a slight loss of length, too slight for me to care.  The first few days were certainly a drag, what with a healing circumcision wound and whatnot, but things have pretty much fused shut at the site of the circ, and the only downside now is pain with nocturnal erections at the site of the plication.  It is quite painful, but not the worst pain I've ever felt by a long shot.  If everything progresses normally, this pain should be gone within a few weeks.

The other downside, of course, is the palpable suture knot.  It is more noticeable than the first time around, but the important thing is that it be durable.  Another case of suture failure would probably kill me (not literally, of course).  I had a follow up with the doc, and he explained that this should also become less noticeable with time, as there is likely still an inflammatory response at the site of the plication, and that this is making it pop out more.  I'm not thrilled about having to explain what that bump is to future partners, but it honestly doesn't seem like a big deal compared to my Peyronie's curvature.  I would be curious to know what other people's experience has been with these knots and whether their sexual partners have ever found them bothersome.

So, I'm going to keep healing and post a few updates as I go along.  I'd also be happy to answer any questions.  And I'd encourage anyone with a positive story regarding plication to post their experience.  One thing I've noticed is a major disparity between the statistics on patient satisfaction with this type of surgery (I understand it's very high) and the types of reports you see on this forum.  I suppose that's because people who've had success are more likely to move on with their lives and stop investing time in the forum.  I'd like to not be that guy.  I had a negative experience back in May, but I'm convinced that this time around I'm on the road to permanent success, and I do believe this procedure is currently the best option out there for those who are suffering from Peyronie's and who fall within the eligibility criteria mentioned above.  I hope this helps someone.

FriskyDingo


'the prospect of biding my time over the course of several years to see if somehow my body would miraculously fix the issue on its own did not seem like an option.' - This is a very strong statement. One of my greatest struggles with this condition is deciding to try to aid my body in healing on its own at cost of lost time during the prime of my life, or to go through with surgery in the attempt to save my precious time at the risk of surgical complications. I am about your age (25), and have had this condition for 2 years. I have made great progress, but it is not cured. I am considering surgery myself, although a different type as my symptoms do not seem to be the same as yours.

Anyways, thank you for this detailed account. Every bit of information is helpful. If I decide to go through with surgery, I'll definitely make sure the surgeon uses an adequate suture as you suggest.

Book Chin

FriskyDingo, I agree that it's a difficult decision to make.  Not to diminish the suffering of those who are affected later in life, but I think for those of us who are still in our sex/dating prime, it is an especially harrowing experience, and the choices we make in how we approach treatment have somewhat higher stakes.  Many of the stories I read early on were told by older men, often already in committed relationships, cases where the possibility of biding time and exploring "softer" treatment options before taking the plunge into surgery seemed like less of a sacrifice.  Like I said, though, I did try oral treatments and the "wait and see" approach; but since, as I understand it, spontaneous resolution will typically happen within the first year of onset of Peyronie's, I gave up after about that long and started looking into more serious options.  Based on what you said (or didn't say) it sounds as if your case might require a more intensive surgery, like excision and graft, or something like that.  Correct me if I'm wrong.  Certainly those surgeries carry more risks in terms of post-operative ED and the like, so I understand your trepidation.  It may indeed be wiser in your case to rule out all other treatment options before taking on those risks.  However, at a certain point, if Peyronie's is preventing any kind of sexual relationship and there seems to be no hope of non-surgical resolution, the risks may be well worth the rewards.  But you will have to decide that for yourself.  I wish you the best, friend, and just know that you are not alone.  Thanks for posting.

bucfan

Hello guys, I am strongly considering plication surgery. I was diagnosed 1 1/2 years ago, I had a curve to the left of ~ 85 degrees. I always had a left curve of 5 to 10 degrees...this drastic change happened suddenly and left me completely shocked. I am not quite as young as you both unfortunately, I am 49 presently, and have been married for 24 years. I cannot imagine how horrible it would be to have this disease at 25 years old, but let me tell you, it is truly difficult at this point of my life as well. At this age many men start to lose some muscle tone, energy, stamina, etc., to lose your sexual confidence as well creates a very troubling existence at times.
I tried the oral meds with zero improvement. I then went through 4 rounds of xiaflex; my curve is now ~ 40 degrees +/-.  The strange thing is while going through the injections my penis started to curve upwards a bit, maybe 10 - 15 degrees, and now when erect it tend to point straight up from the base. It seems the condition has progressed some over the past few months or I damaged myself some more the few times I had sex during that timeframe.  
Since completing the injections, I started traction, it has been 3+ months (2 hours a day). I will do this for 5 or 6 more months, but so far I see no improvement.
My doctor said I have tried all noninvasive treatments. But while I am somewhat better than when I first seemed treatment, I am no where near satisfied. When I told him this, he said I may be a candidate for plication surgery. I will until I complete 9 months of traction before i decide, but I wonder if plication will work for me. As stated my curve is 40 degrees at the doctors office when injected with the drug that causes an erection. But when I am really erect, the curve seems more pronounced. And since I have the left curve + the slight upward curve and now the curve at the base I am not sure the simple plication technique will work.
Book Chin, was your curve only to the left?

kuaka

Prior to going under the knife, I strongly suggest exhausting supplement/med and traction/VED.  There is no such thing as "minor" surgery in my opinion.  

Consider Magnesium Chloride supplementation for a few weeks along with VED and/or Traction just to see.  I've been taking Magnesium Chloride for only a month and have noticed some improvement is Penile scar tissue already.  I will be working on getting a proper evaluation this weekend to see if my curve is reduced, but the "improvement" I have noticed is with a very old scar.  The original injury dates back to 1981, and I have a scar in my urethra which interferes with urination since then.  Catheterization in 1990 gave me several months of a good stream, but it did not last.  Amazingly, just yesterday, I noticed my stream was much better.  So, one month of Magnesium and one scar is almost dealt with already.  I find this very promising.  

Considering also what I know about how modern farming techniques strip the soil of minerals, I would not be surprised at all if Magnesium deficiency was a MAJOR cause...and supplementation a MAJOR treatment factor.

bucfan

Juana, thanks for the advice...Old Man sent me a few PM's stressing the same thing. I will definitely investigate VED prior to any surgery.
Do you purchase magnesium chloride OTC?  I have been reading a lot about it on this forum recently.  

kuaka

My name here is actually "kuaka"...not a real name, but meaning "destroyer of sacred religious idols".

I get it at Walmart.  Brand name "slo mag".  As a supplement, you should be able to get it most anywhere which sells vitamins.

Jonbinspain

Surgery is most definitely the last resort. However, in my case I felt it unavoidable.

I have fought this damn affliction with anything and everything. If it's been mentioned on this site, and has any credibility, chances are I've tried it. For over 4 yrs I tried everything - magnesium included. But despite improving penile health considerably, my curvature would not change.

It's early days yet, but I felt I had nothing left to lose (apart from a considerable sum of money!) by opting for surgery. I investigated the whole issue thoroughly and settled on the Egydio or Stage technique, with Dr Kuehhas as the surgeon.

At this stage, I'm still in bandages, but I'm told that under induced erection whilst i was still sedated, my penis is now straight again. I have many weeks and months of penile physio to do, but if I'm straight again, I'll be delighted.

I think it depends on what stage of the disease you're at. How aggressive it is, if your plaque is calcified, your degree of curvature, how sexually incapacitated you are.  But also, how much time can you afford to wait and hope that your condition will improve? It's individual, but at my stage of life, I just wanted my old penis back ASAP.  

kuaka

We all have to walk this path where we are.  Of the various surgeries, I think you chose the most advanced currently available.  We definitely want to know how this all works out.  Keep us posted.

yyy

I had the same problem, curvature came back immediately after the surgery  

Jonbinspain

If Dr Kuehhas performed the surgery, I suggest you contact him and inform him of the problem. He assured me that, in the unlikely event that anything went wrong, that he would put it right.

I would also add that, along with everybody else on the forum who has undergone the stage technique with Dr Kuehhas, mine appears to have been completely successful.

FriskyDingo

Kuaka: I agree magnesium is absolutely important. I don't take Mag Chloride atm, but I did for several months in the past after my peyronie's had developed and I did not notice any improvement. However, I did notice other benefits that have kept me on either Mag Chloride or Mag Glycinate (another very high absorption form of Mag). Most notably, I stopped getting incredibly painful leg/calve cramps in the middle of the night. Its like a switch. If I stop taking Mag for a while, the cramps will come back. Literally the night I start taking the Mag again, the cramps will not happen. Truly incredible supplement, and I recommend everyone supplement with it.

Jonbinspain: 'Surgery is most definitely the last resort. However, in my case I felt it unavoidable.' - I understand this feeling, and I am approaching this mindset as well. I have cured my anxiety that came with peyronie's, but I don't just want to be non-anxious anymore, I want to be out pursuing females again. I am in the midst of eliminating all other alternatives, and in a year or so I will have surgery if I do not see significant improvement by then. Given your circumstances, I think you did the right thing, and I hope you remain happy with your decision.

My plan atm is to continue alternative treatments and to get another MRI to see whats really going on down there. I do not have noticeable plaque on the tunica. Instead, a past MRI showed I have scarring of the corpus Cavernosum, so hopefully Dr. Kuehhas is able to treat this if it comes down to it in the future.

yyy

scarring of the corpora cavernosa is not treatable, least of all with a surgery.

kuaka

as fibrosis treatments improve, it may not be untreatable...but definitely the less treatable of the forms of Peyronie's

yyy

I meant not treatable at the moment...and never treatable with a surgery

Jonbinspain


krazylord

As Jonbinspain said, it is indeed treatable for mild fibrosis.

I was diagnosed with mild fibrosis by Dr. Irwin Goldstein, and after 4 and a half months on daily Cialis, I did a second ultrasound and the fibrosis got a bit better. And this is directly in my personal experience.

Also, there is one study that shows that if you take dialy Cialis along with some supplements (l-citruline, Muira puama, Guarana and ginger) the results are a bit better than daily cialis alone.

Of course this is all just research, but it is nowadays.  

MoatazKad

seems that severe cases are treatable thanks to that link Jonbinspain provided.

yyy

well if you think that a penile prothesis is a solution...yes. Otherwise no, but think what you want

MoatazKad

isn't a penile prothesis the only remaining solution after you've exhausted everything else?

NeoV

To the OP, I'm really sorry to hear about your struggles, and my wife says she's sorry too. It's just beyond comprehension the crap we go through.

Of course I have to second that traction daily for hours is a must before surgery. Personally I can't really imagine ever having surgery, but as you described, dealing with this for four years and trying things I see why you chose it. I'm glad things are working out now!

Yes ginger and other supplements can really help fibrosis, taking several different things now as usual and it's helping.


LWillisjr

Quote from: MoatazKad on December 26, 2015, 01:02:10 AM
isn't a penile prothesis the only remaining solution after you've exhausted everything else?

No, there are various surgical procedures that are available. And not all of them involve a prosthesis. Many uninformed urologists confuse this as well.

Several years after my peyronies and surgery correction, I had a kidney stone. I followed up with a local urologist who of course asked about my history. When I mentioned peyronies and that I had surgery he asked my how I was handling the impotence. I told him I'm not impotent and that I achieve erections easily. Then he asked my about my implant and I said I didn't have one. It was becoming obvious he either didn't believe me, or he didn't know what he was talking about. So he changed the subject and moved on.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Jonbinspain

Sounds all too familiar, unfortunately,  from reading what's posted on this forum.

Once again, a reminder to members - especially new ones, that not all Urologists are anywhere near up to date with how best to treat this disease.  

FriskyDingo

YYY: You say scarring of the CC is not treatable with surgery, and from what I have read I think you are right. Im pretty sure what what the London Clinic does is not applicable to CC fibrosis, but they do offer implants. And implants are something I consider.

Until then Im going to implement every know natural anti-fibrosis compound I can afford. Running a stack of HGW, Damiana, home made fermented foods (great for nitric oxide), enteric coated bromelain (I actually doubt this will do anything for fibrosis directly, but highly anti-inflamatory), and other things. The horny goat weed is, IMO, an effective natural substitute to Cialis/Viagra. Having used it prior to peyorie's, I can attest to its effectiveness in increasing blood flow and libido.

FriskyDingo

In regards to Jonbinspain's link:

Im attempting the oral regimen suggested in your study. This article cites a study I seen before, which suggests an effective anti-fibrosis combination of PDE5 inhibitiors and compounds that break down collagen. Unfortunately, the cited study refers to the use of Cialis and Collagenase. Since, IMO, collagenase is both hard to obtain and dangerous to mess around with, I am going to take PDE5 inhibitors (HGW / Damiana and perhaps some other herbs I know to be effective) and an enteric coated enzyme (bromelain seems to have some solid research baking it up for post-operative fibrosis prevention). I know the enzymes have been tried many times on this forum and have failed. I have tried them myself to months without any noticeable affect. But I did not try them at the same time as a solid dose of a PDe5 inhibitor.

There is also about 5 other things I am doing for anti-fibrosis, so hopefully the combined potential of each with have an effect.