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peyronie's disease

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Posted 7/12/2014 11:37 PM (GMT 0)
Just over 4 years ago had RP so far so PSA 0.04 but definitely lost length could live with that small price to pay.
Then ED a big problem tried all meds no help so no sex for over 4 yrs then when I thought things could not get
any worse out of the blue developed peyronie's disease lost more length.
I am now left after my RP WITH A TINY TINY penis when I get a partial erection it is curved up and slightly to the left
I am unable to have sex it has been over 4 years I'm depressed and fed up never knew having a RP I would end up like this.
Would a implant help desperate for any advise.
tony w
mad
Posted 7/13/2014 12:35 AM (GMT 0)
sorry to h?ear this for you , is it the needle or the drug ingrediants that cause the perrionnes
Posted 7/13/2014 12:45 AM (GMT 0)
No never used needle just woke up one morning about 3 yrs after my RP and noticed a difference.
Went to Urologist said it was the start of peyronie's disease very common after RP surgery they have
no idea why it happens in some men after RP surgery.
Posted 7/13/2014 2:58 AM (GMT 0)
Tony-

Yes, an implant will cure your ED and will also undo the effects of Peyronie's.

Your Uro said that Peyronie's is "very common" after RP. Specialists say that Peyronie's occurs in 15% of men who have RP (compared to 9% of men who never had RP). I don't call 15% "very common".

There are very few Urologists who have real experience treating Peyronie's. Dr. Laurence Levine in Chicago and Dr. John Mulhall in NYC are considered the best.

I strongly suggest you read this post for more info on how to find a Uro in your area who has experience treating Peyronie's.
www.healingwell.com/community/default.aspx?f=35&m=3003724

I see that you are in Australia. If the link above doesn't help you find someone who has experience treating Peyronie's in Australia, I suggest you contact Dr. Levine and Dr. Mulhall and see if they know of someone.

-Gedman
Posted 7/13/2014 3:17 AM (GMT 0)
Tony,

It seems that, unfortunately, you have become a Poster Boy for use it or lose it, eh?

Not sure if it will be of any help now, but you can try a pumping regimen to see if you can reverse the curse of not having nocturnal erections (and no daily/nightly increases in blood flow and stretchings that keeps a member healthy and happy and wild).

For other PCa surgery veterans who are getting no joy from PDE5 inhibs, think about getting on a daily pumping program as soon as you can -- a month after surgery is OK but check with your Doc. Some support doing pumping.. others think it does not help but you can always just ignore that and do it anyways.

Also regular trimix or other shots are a great way to get that blood rushing thru a few nights a week -- even if not always used for intercourse just do em anyways. You can certainly feel the heating that shots will give due to all that blood rushing in.

I had started pumping 3 weeks after surgery and have maintained it regularly for 5 years now.. and have managed to keep length and have even permanently increased girth by at least .5" Not bad for never getting a natural E in all that time (but thousands of pumped or shots erections!).

Good luck in getting things back in shape... ( also if you take Gedman's advice, doing pumping for months leading up to fitting for implant will usually get you max flex/stretch and help achieve a max possible implant length).

J

Post Edited (JStars) : 7/12/2014 9:35:03 PM (GMT-6)

Posted 7/13/2014 3:31 AM (GMT 0)
gedman & JStars
Thank you so much for taking the time both comment and advise were most helpful
God bless
tony w
Posted 7/13/2014 4:14 AM (GMT 0)
Tony -- Sorry for your difficulties, but happy to see you are in the Zero Club.

Just my opinion, but I would try Trimix injections before going the implant route.
Trimix will do nothing to cure the curve, but it should give you an erection, once you get the dose right.

I've never used a pump, but although they don't help so much with erectile tissue rehab (because the oxygen content of the blood they bring into the penis is too low) ... they can provide usable erections and they can increase your length (and girth as JStars reported). However (and this is a question for pump users) - if you have Peyronies can you still use a pump? I'm guessing it would depend on the degree of curvature.

Hoping you find a workable solution -- Tigerfan
Posted 7/13/2014 12:42 PM (GMT 0)
Tony,

As others have said, Peyronie's disease is treatable if you find the right doctor. There are a number of treatments and, generally, your doctor will try them in the order of least to most extreme. We have a number of guys here on the forum who have been/ are being treated for Peyronie's disease and here are a couple of treatments I remember hearing mentioned. Obviously, your doctor will know which ones might work for you but this list may give you something to ask about while you are shopping around for a doctor.

1) Vacuum Erection Devices (VEDs) are somewhat helpful, more for maintenance than for treatment of established disease. Regular use of a VED helps keep the tissues exercised and stretched. This is generally thought to reduce or reverse some of the shrinking and fibrosis of the erectile tissues. Using a VED to get several short-duration erections each day helps somewhat with oxygenation of the tissues by drawing fresh blood into the penis. The reason it is only "somewhat" helpful is that a VED draws a mixture of arterial (oxygenated) and venous (spent) blood into the penis, depending on your circulation, and the oxygen levels are sometimes only so-so. The stretching effect can help to thin out the scars ("plaques") that cause Peyronies disease and can help (a little bit) with the curvature.

2) Intercavernouse Injections are injecting drugs directly into the penis that relax the smooth muscle surrounding the blood vessels and chambers in the erectile tissues, allowing your blood pressure to inflate them giving you an erection. This is, essentially, the same process that occurs in a natural erection and it has all the advantages of a VED and does a better job of oxygenation. Some men believe that the injections cause tiny scars that, over time, can contribute to Peyronies disease, but several well known doctors downplay this issue. Sticking needles in you member is easier than you think -- it would have to be, wouldn't it, if guys do it? I inject three times a week to keep Mr. Unreliable from shriveling.

3) Penile Traction Devices are pretty much the same spring-loaded stretcher doodads that you may see advertised in men's magazines and "Grow Your Penis" spam in your email. They have to be worn for several hours a day for months but research has shown they are helpful for men with very small penises or with mild Peyronie's disease. The gentle stretching encourages cell growth along the axis of the tension. The areas around the Peyronie's plaques will get a disproportionate amount of the pulling (because they are the parts that don't stretch very well) and tend to see more of the effect. Since you are unhappy with your post-RP size as well as having some Peyronie's this would definitely be something to discuss with your doctor.

4) Injections to break up the plaques. There is a new treatment for Peyronie's disease that involves injections into the scarified plaques to break up some of the tissue that holds them together. These injections are used in combination with the traction devices mentioned above. The injections are are only available (in the US, anyway) from specially trained doctors who understand and can mitigate the risks. There is a risk that the tissues can tear which would require surgery to correct. These injections (because they have risks) are usually only done on men who have a more than 30 degree curvature from their Peyronies.

5) Penile Implants are inflatable rods that are implanted into the erectile chambers of the penis and can be inflated with saline solution from a reservoir in the abdomen using a small squeeze-bulb pump in the scrotum. This does fix the Peyronie's and also generally fixes other ED issues as well. It is a big step but penile implants have a stellar record of patient satisfaction. Even if you decide to get an implant it may be worth pursuing some of the other treatments first. When the surgeon sizes the implant he will put in the biggest one that will fit. Since you are unhappy with your size after your surgery you might consider a couple of months of VED use, traction or injections first to see if you can't qualify for the next size up.

6) There are other surgical treatments for men who have good erectile response except for the Peyronies. We don't get a lot of those guys here on the forum. It doesn't sound like you are one of them.

Good luck finding a doctor down in Oz. Keep us in the loop.
Posted 7/13/2014 1:40 PM (GMT 0)
Gentlemen-I'm about 5 years out and got Peyronies at the 3 year mark. I use the VED for both therapy and sex and a traction device for straightening. The combo has helped arrest my problem, but did not heal it. I would agree that the implant has to be the last resort. I have never got an erection since surgery by any other means then the VED. Persistence has caused us to overcome these roadblocks to having sex. No other quality is as essential to success in the bedroom. I keep my T levels up over 1000, to keep my libido motivated and romp with the wife of my youth 2-3 times a week. BTW there is no better resource for peyronies then www.peyroniesforum.net- Regards Inkhorn
Posted 7/13/2014 2:08 PM (GMT 0)
a stupid question , but in most cases can you still have sex with perrionnes ?
and what is it like to live with it ? is there pain ? are there any other issues ? I realize there is an emotional component I could only imagine . hope someday they find a cure
Posted 7/13/2014 3:30 PM (GMT 0)
No Patience-

Depending on the amount of curvature, sex with Peyronie's can be painful or even impossible.

In my case the scar tissue pulls equally in all directions, so I have almost no curvature. However, the scar tissue doesn't stretch like normal penile tissue, so I lost 3/4 of an inch of erect size.

-Gedman
Posted 7/14/2014 12:13 AM (GMT 0)
is there a trimix suppository you can just put in the head of penis
and not use needle therefore averting peyronnis or is the medicine the culprit?
Posted 7/14/2014 1:59 AM (GMT 0)
Dr. Mulhall is confident that injections don't cause Peyronie's. However, if you are concerned there is something called Muse, which is inserted in the urethra. You can find more info here: www.muserx.com/hcc/.

-Gedman
Posted 7/14/2014 8:30 PM (GMT 0)
I don't want to disparage any doctor here who cannot defend himself but one of those doctors that were recommended was my doctor and I would not recommend him to my worst enemy.

I Strongly suggest you visit the leading forum on the internet for Peyronies Disease http://www.peyroniesforum.net
Posted 7/14/2014 11:11 PM (GMT 0)
Tiercel,

Can you elaborate a little more for me on "I would not recommend him to my worst enemy".

My email is available if you need that. Thanks that is important to me.

Tony W, I am alot like you my friend so thanks for posting so I know I'm not alone.
Posted 7/14/2014 11:28 PM (GMT 0)
Tiercell I think you should just come out and say what you want. you could be helping someone
who makes up these stupid rules here and who anointed them . we live in a free speech country . doctors aren't protected from criticism
Posted 7/15/2014 12:03 AM (GMT 0)
ummmm....no. Please do not specifically defame a doctor on this site. The "stupid rules" are established by the owner. We participate at his pleasure and with his rules, thank you.

If you guys want to flame doctors feel free to do it back and forth via your emails and not publicly on this forum.

Jim
Posted 7/15/2014 12:24 AM (GMT 0)
I am new here. Can you private message on this forum?

Let me answer by making a very informed recommendation. Dr. Lawrence Levine (Chicago) and Dr. Tom Lue (in Calif.) are 2 of the best PD doctors in the country. There are other good implant doctors that do hundreds of implants a year (such as Dr. Eid) but they are not Peyronies doctors. I think your likihood for a good outcome are good but you must research options including informing yourself about Peyronies, implant types, and above all, excellent doctors.
Posted 7/15/2014 12:35 AM (GMT 0)
Tudbock who is an owner ?
Posted 7/15/2014 1:08 AM (GMT 0)
Every forum has individuals (or organizations) that pay for the domain name, pay for space on a host server, work to design, administer, and moderate the forum. It is a huge job. Those individuals are entitled to set the terms of use and to run the forum by any set of rules they please. If people think it is reasonable they will use the service or even share in the work. If they do not think it is worthwhile they will go elsewhere.

I respect that and thank those that labor to make this forum a success.
Posted 7/15/2014 1:42 AM (GMT 0)
If you should ever go to the home page, you'll see that Peter Waite is the founder, owner, and person who sets the rules.

We have a rule against flaming, and that also helps mods protect us from legal issues that can come from defamation / slander of doctors. Remember that there are lawyers out there that chase the internet as well as ambulances. One lawsuit could kill the site and all the good it does.

Someone asked about PM (private messaging) on the board. No, we don't have that. Look at the users profile. If they have elected to share their email, it will be there.

Any post that "names names" of a doctor or facility is subject to deletion/editing.
Posted 7/15/2014 4:24 AM (GMT 0)
Tiercel,

My email is <redacted>

Removed the email address so the spambots won't get it. To send BigAl an email, make sure you are logged in and click the envelope icon on the left.

--PeterDA

Post Edited By Moderator (PeterDisAbelard.) : 7/15/2014 7:10:31 AM (GMT-6)

Posted 7/15/2014 5:26 AM (GMT 0)
Tony W, I developed Peyronie's after the RRP and eventually had an implant. I am very happy with the result - fixed the problem with Peyronie's as well as ED. Sex with Peyronie's, even with injections, was problematic and frustrating. The implant turned out to be my solution.

Unfortunately, the implant will not "fix" a length problem - if you want to know how long you will be with an implant, take your flaccid penis and pull directly out on it as far as you can - that is what length you will have when inflated. Because of the risk of erosion, docs cannot make it longer than that - the implant can wear through the skin if it were. This would necessitate removal / replacement of the implant. You will have a small bit of increased length with some brands of implant over time with regular inflation, because it stretches out the organ a bit.

Based on the amount of frustration you have had, I believe you would find the implant to be a good solution - but I am definitely shorter than before my RP surgery, I do not believe the implant can help you get that back.

Best regards, Jeff
Posted 7/15/2014 12:44 PM (GMT 0)
Im_Patient
Thank you finally some good advise regarding my post I was thinking about implant
so glad you are happy with yours.
I am leaning toward implant as I can see no other solution thank you for your input.
tony w
Posted 7/15/2014 1:15 PM (GMT 0)
Tony,

Im_Patient is right that the surgeon can't help with your size at the time of the implant but, if you are very unhappy with your size you could try a traction device for a few months before surgery. Studies have shown that men with small penises can gain up to about an inch.
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