Peyronies Treatment Advice

FOUR RULES OF PEYRONIES TREATMENT 

1. Peyronie's disease is an affliction of the erection.  If the erection is not examined by your healthcare provider, then they cannot treat the illness properly. If your urologist does not examine your erection, then find a new one. There is more on this issue in my story. 
2. To everybody else but you your bent erection is a big joke. Nobody cares how it effects your mental health or your relationship with a partner. Sorry, but it’s true. This is a reflection of our current culture.  Video shows play montages of men getting serious testicle injuries to a laugh track.  Everybody seems to think it is funny.  When a man traumatically loses his penis it’s reported by the news  as a big joke.  This is true even among healthcare workers.  They dwell in our culture as well.  It does not mean they won’t do the best they can for you.  This simply means you should not expect a bunch of empathy. My personal experience with women in the urology field has been dismal. I would not suggest a woman healthcare provider for this issue. 
3. Almost all specialists today are employed by medical corporations.  They get paid by these corporations to make them money.  That is the specialists number one job and treating you is secondary.  It is just the nature of our current healthcare system and we all have to deal with it. 
4. There seems to be some truth to the idea that psychiatrist go into their profession because of their own mental issues.  It also seems that urologists go into  their profession because they have no balls.  Over the last 50 years while other healthcare specialties have improved in treatment and technology by leaps and bounds, urology has been mostly stagnant.  Many of the procedures and treatments that are used today are the same ones used 50 years ago maybe with just some newer technology.  There are many ways that treatments of prostate and Peyronie's disease could be improved but it seems that nobody wants to try new things.  Personally, I would treat the acute phase of Peyronie's as well as the surgical phrase much different than is currently done and in my opinion an improvement. 

MY STORY: This is important to read. Has pearls that will help you along the way towards treatment. 

My first symptom was I  noticed shortening during intercourse, less penetration. I thought it was my imagination then I started having pain. I realized what was  going on. I am a physician but not a urologist. This was May. I had a regular appointment with my urologist at UPMC Chautauqua the following Januray. ( I am 57 at this time). He could not see me so they put me in with the female CNP. When the LPN took me back, she asked me if I had contracture. I told her no and she said “well, then you don’t have peyronies disease”. The NP came in to the exam room and asked me the same thing and again told me I don’t have peyronies disease. She had me drop my pants and began examining me. I have never had my genitals examined before and I was quite mortified. She examined my testicles first for what seemed like forever. She then grabbed the head of my penis with one hand and ran her fingers along the shaft feeling for scar tissue (plaque) with the other hand. She suddenly jumped back like she had been burned. I reached down and pulled my pants up. This is when I realized I was just starting to become erect. I wasn’t aroused. I didn’t even know. It was horribly embarrassing. She told me she didn’t feel any plaque. ( I could feel it). She said even if I had peyronies disease “there is nothing that can be done about it except Xiaflex injections and it’s really painful”. “My advice to you is to just forget about it”. I left the office wishing I could forget about it. BY October I had significant dorsal contracture making sex  impossible. I went back to the urologist again and they stuck me with the same NP. She came in the exam room and said “I’m not going to examine you because I already told you there is nothing that can be done!” She told me just to keep the January appointment with the urologist. I asked about using traction devices or other things to slow down the progression. She told me they don’t do anything. I told her that I was really concerned about the shortening. She told me, “Peyronies disease does not cause shortening! IF you have any shortening it’s because you’re” (and she the spread her arms real  wide and made a fat face). Yes, she did. Maybe she was mad about what happened the first visit? Maybe she is offended by overweight people? Personally, I think she is just a perfect example of rule number 2! I’m 6’4” and about 280 lbs. I’m built like a football player. You wouldn’t look at me and think “fat.” This leads me to my advice on CNP’s. A urologist usually gets 10 years of post graduate training and school. A NP gets 2, usually with no specialist training at all. If you make an appointment with any “ologist” you should see the Dr for your initial appointment. If you can’t, go somewhere else.  I saw the urologist in January. He asked me to show him how bad the contracture is with my bent finger. He suggested starting Xiaflex injections. I was not keen on this. (read about Xiafles under treatments). I made an appointment with the Dr at the Cleveland clinic that is supposed to be the expert on peyronies, Dr Angermeier. On my visit a resident came in and asked me questions and had me show him (bent finger again) how bad the contracture is. The DR  came in and examined me. He stretched my flaccid penis out and said "Look, that’s how long it will be after plication surgery.” OK…. So six inches may be groovy to him but a loss of 2” not so much to me. He said we would do Xiaflex and then do plication surgery. I had to be fine with that. He is supposed to be the expert. I tried to schedule the injections and they told me they would do it in about 4 months. ( see rule #2). I contacted the first urologist and he was able to start it in about 3 weeks so I set it up. In the meantime, Cleveland sent me  a link to a live webinar on peyronies. I watched the webinar and a young Urologist talked about his experience with graft surgery and how it has a better result with maintaining penis length than plication and how “95%” have satisfactory erections after surgery. I made an appointment to see him in about 4 months. (rule #2 again) In the meantime I began Xiaflex injections. There was no anesthesia or anything just 4 shots into the scar tissue in your penis. I knew it would hurt but I was surprised how much. I did two series of Xiaflex. My penis swelled up so much each time I had to pull the swelling back to pee. I think if anything, it deformed me more. I didn’t do anymore. Eventually I had my appointment in Cleveland with Dr Petar Bajic. He told me he wouldn’t do anything without examining my erection and doing an ultra sound. This is the most important thing you should remember. This is a disease of the erection. If your Dr doesn’t examine your erection than he can not treat it appropriately. Go elsewhere. On that appointment, he injected my penis to make it erect (didn’t hurt) and left the room for a few minutes. He came back and examined the firmness of the erection, measured the curvature and then did the ultrasound. Afterwards he injected something to deflate it (it was painful and made feel like I had to pee badly) and squeezed it pretty hard with both hands to deflate it. He told me The curvature was too severe for plication and that I had calcifications and was not a candidate for Xiaflex. This is something that would have been discovered 8 months earlier if either of the first two Doc’s had examined the erection. I was scheduled for the surgery. You should read about the surgery in the treatment section if you’re going to do it. Forty-five minutes after I left the ultrasound, the erection re-inflated. It was painful and lasted about 90 minutes. I think the pain was from it being squeezed so hard.  Pain was not an issue after the surgery. I got an erection about 4 days after the surgery and pulled some sutures loose. It took a long time for that to heal. Dr Bajic said that getting an erection in the first month  after surgery was uncommon.  After two weeks they had me begin using the restorex traction device an hour every day and begin Cialis 5 mg daily. ( Quit taking the Cialis 3 days before your urology check-up if you want to avoid embarrassment. ) I have a section about Cialis etc. in “treatments”. After 4 months, and with the Dr’s permission, I began using a vacuum pump once a week. I think it helped with restoring girth and uniformity. Traction once a week after 10 months and then once a month after a year. 

Results: It is about an inch shorter when erect.( see the discussion under treatments) The erection is satisfactory. I had no loss of feeling after the surgery.  Something to keep in mind is that most urologists have no actual idea how many people have satisfactory erections after surgery because they only go on anecdotal evidence. He never actually examined my erection after surgery. Keep this in mind when a Dr tells you he has great results with Xiaflex. Ask them: How many of those did you examine erect before and after treatment. Why haven’t you examined me erect? How do you know my curvature is not too severe for Xiaflex or if I have calcifications? Read the treatments section. Much more important info. 

Treatments: This is my impression/advice on treatments. You should take it with a grain of salt and seek professional advice from a urologist. 

The acute or initial phase: This is where it is just beginning, and you have pain with little or no deformity.  This is an inflammatory phase.  It should definitely be treated with anti-inflammatories such as ibuprofen, naproxen or prednisone.  To be honest, if I could go back in time I would have injected the scar tissue that was just beginning in my penis with dexamethasone and Kenalog.  Some research supports traction therapy during this phase.  I think you should seek out the advice of a urologist about this.  There is also concern that traction at this point could aggravate the inflammation.  As soon as you begin experiencing pain you should seek out a urologist. 

The contracture or deformity phase: 

DMSO: This is a chemical that a guy wrote a whole book about on it’s use in Peyronies Dz. It is absorbed through the skin and quicky goes throughout your body giving you a garlic taste in your mouth. It is thought to have anti-inflammatory properties and to  be carcinogenic. My biggest concern about it is that the main nerve and artery to the glans is on the top close to the skin and what kind of permanent damage could this chemical do? Will it cause ED? I actually have it at home but, did not use it. 

Xiaflex:  

This is an FDA approved injection to help break down the plaque.  I am not a big fan of this.  Every urologist who told me they got results with this never examined the erection before or after.  According to the company’s research, Xiaflex gets results in about 40% of men injected.  They also report that 20% of people get better with no treatment.  What that really means is that 20% of people injected actually got benefit.  If you look on the common medical advice websites, the reviews are only about 20% positive.  This is anecdotal of course. I think the serious risk of side effects or deformity is not worth the risk.  If a urologist assures you that they get good results then ask them how many people they examined erect before and after. 

Traction: 

I tried all the traction devices. None of them did anything before surgery. After surgery they were helpful in retaining length and preventing contracture of scar tissue. The big difference between them is how they clamp the penis. The ones that used cock rings of various strength and shape were either too tight and cut off the circulation or didn’t stay on with adequate tension. I found the ones that clamp on with some sort of plastic tubing very difficult to use. The suction ones were the easiest and most comfortable to use. The problem with them is that the glans swells up from the vacuum and you can’t get it out. The best device in my opinion is the Restorex system. It is expensive. It is painful to use but does the job it is supposed to do the best.  I suggest using the wrap they enclose with it (you’ll need more. Search “coban” on amazon.) I also suggest getting a gel big toe cap and cutting the end off it making it a sleeve and putting that over the supplied wrap before clamping. It is still uncomfortable but bearable. 

Surgery: 

I won’t go into detail on the techniques. You can look them up. The surgeries cause shortening and can have side effects so do not have surgery unless your curvature makes it impossible to have intercourse. Plication surgery causes shortening by nature. It does maintain your original erection strength and has quick healing. If another, better surgery comes out in the future you can still have it. The graft surgery is used when the deformity is too severe for plication. The grafts are limited in size and they won’t order more because they can’t bill for it. So, in my opinion, If you have a 6” erection or shorter you will probably maintain length. If you have a 7” or longer erection, you will have shortening. Forget what the urologist says about “their patients outcomes” because they are full of shit. Unless they are getting paid to do research, they never evaluate a post-op erection, so they have no idea how their surgeries come out. It’s like doing plastic surgery and never seeing your patient’s post-op to see how your surgery turns out. But then nobody cares how your surgery turns out but you. (rules section). 

ED Pills  

You may be given Cialis or Viagra post-op to get erections to keep things stretched out. All of the info on these  is paid for or filtered by the drug company so don’t expect reality. In my opinion, Viagra lasts as long as Cialis. I find that they make you “hornier” so you are more apt to get aroused or wake up with an erection. Personally, I find the erections LESS hard after taking these pills than more hard. Yep, hard to believe. I’m sure I’m not the only one but you won’t find anything about that on the internet. I don’t take them anymore. The DANGER of these pills is psychological. A huge part of getting and keeping  erections is mental. If you start taking these pills, you may start to believe that they really help you which may be a good thing. On the other hand, you may start to think you can’t get an erection or have sex without them. They are definitely psychologically addictive. DO NOT take them unless you really need them. It can cause you more problems than not. 

New ED Treatment: 

There is a new ED treatment trending online. It is nirto-paste. This is a hoax. If you put it on the tip of your penis, it will make it red and swollen but won’t give you an erection. If you put it on the base, it will make the skin red and warm but won’t give you an erection. 

Contact me by email: p_dz57@myyahoo.com  or use the contact /question form below