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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

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Author Topic: Have lurked a while and thought I should, finally, register  (Read 765 times)

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AskinForAFriend

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Have lurked a while and thought I should, finally, register
« on: December 09, 2020, 01:57:50 PM »

Hello, folks.

Back nearly 2 years ago (when I was 39 years old) I found this board while searching what to do for this wretched disease, all while getting depressed further because the reality set in that there is no "one size fits all" and everything seems to be based on "hope". However, reading about other people and their experience did help me. While I don't expect my experience to help others so much I figure I should get a little active on here to gather more information, my thinking through it all, and current thought process.

Nearly 2 years ago I found a very small, not even pea-sized lump in my penis. I did not think much of it and it had no affect on my life at all. A couple months later, I started having pain during erections and a very small bend to the right in my penis, not enough to affect my life still but I reached out to my doctor, who referred me to a urologist. The urologist confirmed that it was Peyronie's but said it was a mild case and likely toward the end because the pain had subsided by the time I got the appointment. She gave me the name of another urologist that specializes in Peyronie's should things get worse.

About 4 months later, it got much worse. The bend to the right was much more pronounced (couldn't guess on angle) but still no pain and really did not affect my life much still but I decided I should reach out to the other urologist to try to see what could be done. A few months later, I had my first appointment with him and said Xiaflex might be a viable option for treatment. It took about 6 more months to have the first injection because of COVID starting and restrictions that had been put in in the spring, by that time the bend to the right was gone and the bend was significantly upward. Sex was impossible, I could not get a good erection let alone maintain one. I asked my PCP for cialis and he gave that, which helped but still not enough to successfully have sex.

So far, I have been through 3 rounds (2 shots in one week) of Xiaflex and no real change at all. I did ask the urologist if it would be worth buying a traction device (such as RestoreX) to use in conjunction with the cialis and Xiaflex and he said there just wasn't enough evidence to warrant purchasing a device so I dropped. He is a very well-known urologist in the Peyronie's research community, hence why I am seeing him and trusting him.

But...of course, after every round of Xiaflex, I have a little hope that something might change but end up being depressed when there is no change and end up keeping the appointments for the next round. I will likely go through all 8 rounds to see it to the end but have little hope that it will meet my goals. My goals are simple, same as the urologist, able to have stable erections without cialis and comfortable sex. I don't have high standards nor expect my penis to be 21 again. My guess is I will opt for any possible surgery to correct the issue, regardless of potential downsides since I cannot currently have sex now so....there wouldn't be much change if I had the surgery and still couldn't.
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Peyronie's Apr 2019 -- small rightward bend, Erectile Dysfunction -- Jan 2020 severe upward bend, Cialis started May 2020, Xiaflex started Jun 2020 -- little results after 3 rounds, 4th Round Xiaflex Jan 2021 -- began using RestoreX

Hawk

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Re: Have lurked a while and thought I should, finally, register
« Reply #1 on: December 09, 2020, 05:22:30 PM »

JakeWa,

Welcome to the forum.  I am glad you registered to have some exchange rather than internalizing all of this.  Jake, you are going to be fine.  I want to start by recommending a few basics as a forum member.
1. If you have somehow missed it, read the survival guide carefully. https://www.peyroniesforum.net/index.php/topic,3180.0.html
2. Please fill out your signature line like the one that appears under my post.  It will save you a lot of repetition and typing and help others give you relevant information without having to guess or ask so many repetitious questions. https://www.peyroniesforum.net/index.php/topic,10819.0.html

I think you are wise to follow through with the Xiaflex.  If by chance, it does not work, at least you know you tried it.  Since you have tried Cialis without satisfactory results and since you have deformity and Erectile Dysfunction, it is time you start considering a 3 piece penile implant.  Before you faint,  8) let me tell you that every man here who has one has only 1 regret, that they did not do it sooner.  Read this link. https://www.peyroniesforum.net/index.php/topic,10974.0.html

You have quite a bit of homework, so I wish you well and hope to talk to you again.

Hawk
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

AskinForAFriend

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Re: Have lurked a while and thought I should, finally, register
« Reply #2 on: December 10, 2020, 12:50:54 PM »

Thank you, Hawk.

It is so easy to internalize the struggle, especially since I have battled with depression since a teen and this just made it worse. The first year was the toughest...not knowing how my wife would stick with me, how I could fight something that has no cure, etc. Thankfully, as time has gone on, it has gotten easier to deal with and hold on to the thought that I am doing the right thing, talking about it with others, including my supportive wife, exhausting other options that are "easier", and working for a company that has terrific insurance that takes the cost of treatment out of the decision, which I think is a huge amount of stress for other folks going through this. I'm also thankful that this isn't a pride-thing for me. Sure, it's my manhood and it is easy to feel insufficient but I truly don't care how I get where I need to be or even how it looks as long as my lady is happy.

I do wish I had found this board way back when it all started and symptoms were not a big deal at all...I feel like I wasted time thinking I could definitely live with how it was back then and the first urologist I saw basically said the same thing. Meanwhile, the disease took it's time to manifest and turn into what it is today. The survival guide definitely would have been useful back then to maybe make it so the condition isn't so bad right now. I have lost a lot of length, definitely have deformity (probably considered hourglass), and while I can manage very, extremely careful sex with Cialis (it does tend to bend further back even with taking Cialis if not careful), I think to say it is "unfulfilling" for my lady is an understatement. She would never say that but I can read between the lines and know it is nothing like it used to be for us.

I did nearly faint after you mentioned "3 piece penile implant"!! That is an awful lot for a 41 year old to swallow but also because it is something my wife and I have already been discussing for some time. I have no issue at all with doing that or having that because it would mean my lady is happy and makes no difference to my own life. My lady is actually hoping I decide to call it quits on the Xiaflex and just do the implant to get it over and get back to our night time rituals sooner than later. But...I ask her to be patient because I am a person that has ability to see Xiaflex through to the 8 rounds with little hardship and maybe it can lend to the studies on the effectiveness of the shots to the end. Maybe it can give some people some hope when they are in the same position I am in at this stage in the game and wondering if the end justifies the means.
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Peyronie's Apr 2019 -- small rightward bend, Erectile Dysfunction -- Jan 2020 severe upward bend, Cialis started May 2020, Xiaflex started Jun 2020 -- little results after 3 rounds, 4th Round Xiaflex Jan 2021 -- began using RestoreX

LuisFernandez

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Re: Have lurked a while and thought I should, finally, register
« Reply #3 on: December 10, 2020, 10:34:50 PM »

If you're taking anti-depressants they can also contribute to your Erectile Dysfunction.

You should be using traction and VED. PARTICULARLY if you have Erectile Dysfunction.

Before jumping on implant you should probably check for a venous leak.

But yes it's true. An implant would fix both the curve (for the most part) and the Erectile Dysfunction. No need for grafting or excision, just implant.

I'd still recommend using VED daily and try to rehab the penis. This will make sure you maintain your size in case of implant and deliver blood to your penis.

Best.
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Injury in April 2020. Onset of Erectile Dysfunction.
Started RestoreX and VED 2 months after injury.
Taking 10mg daily cialis, pentox, coq10, vit-e.
Traction (+1 inch)/VED/PGE-1/DMSO+X
Recovering slowly. Be patient and diligent.

Hawk

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Re: Have lurked a while and thought I should, finally, register
« Reply #4 on: December 10, 2020, 11:55:52 PM »

LuisFernandez gave you some good advice about VED and Traction to maintain or gain all the size you can prior to an implant.  Do not use a VED however during injections.  I would also use light/moderate traction during Xiaflex.

In your 40's is not all that young to have an implant.  Many men in their early twenties have had them.  It is true that if you live a long healthy life you might need a revision or even two but not having confident sex now is certainly not solving anything.

I disagree with the last post on one point.  If you have a bend and Erectile Dysfunction I don't care whether the Erectile Dysfunction is from venous leakage or any other physical issue, it is not likely to get better as you go from 40 to 50 to 60 yrs old.  It is likely to be progressive.  Antidepressants indeed do contribute to Erectile Dysfunction but unless you learn to control depression through mindful meditation and Cognitive Behavioural Therapy (very helpful), then you will likely be on antidepressants for some time.  Wellbutrin is your best shot at one that is least likely to cause Erectile Dysfunction.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

AskinForAFriend

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Re: Have lurked a while and thought I should, finally, register
« Reply #5 on: December 11, 2020, 08:21:57 PM »

Thank you both! I should have mentioned that I have been diagnosed with cognitive distortion as well as had cognitive behavioral therapy some years back. I tried Wellbutrin but I was one of the very few that had terrible side effects from the medication. I have Hashimoto's, celiac, and early onset Crohn's so medication that is typically fine for most usually will interact with something I have going on already in my body. For the last year or so, I have started having anxiety attacks so I have been on Lexapro for a few months now, which has helped my depression far more than any antidepressant I have ever been on or any therapy I have had. It could be why I hold hope when I do go in for a new round of Xiaflex :-)

Ya know, I should be careful of how I say things....I'm definitely not saying I am a spring chicken...I am a young 41 now but I know some men have it so much worse than me and have a rough go in their 20s and even teens. I guess what I really meant is the shock of going from perfectly normal not even 2 years ago to debilitated and needed what I would consider excessive assistance for what used to be so trivial just a short while ago. Don't get me wrong, I am prepared for whatever...the end makes no difference to me as long as that part of life somehow returns.

Thanks for the advice on traction and VED as well. Point well taken and I will ask for a RestoreX and a good VED for Christmas! LOL! I do the manual "traction" I am asked to do by the urologist with the Xiaflex but that's about it so far.

Thanks again!!
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Peyronie's Apr 2019 -- small rightward bend, Erectile Dysfunction -- Jan 2020 severe upward bend, Cialis started May 2020, Xiaflex started Jun 2020 -- little results after 3 rounds, 4th Round Xiaflex Jan 2021 -- began using RestoreX

TonySa

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Re: Have lurked a while and thought I should, finally, register
« Reply #6 on: December 12, 2020, 12:51:54 PM »

Jakewa, adding traction and VED should help w your other treatment approaches.  Combination treatments have the best impact.  BTW, it’s great lexapro is also helping w your depression.  It is prescribed for both anxiety and depression.  tony
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

TDix

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Re: Have lurked a while and thought I should, finally, register
« Reply #7 on: December 12, 2020, 05:16:43 PM »

Don’t be afraid of surgery in the right hands.  Not saying to go that route, as everyone can do what they wish with their body, but in the right hands surgery/implant can make a major life impact on you positively
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

AskinForAFriend

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Re: Have lurked a while and thought I should, finally, register
« Reply #8 on: December 14, 2020, 05:42:09 PM »

Oh my goodness....I completely forgot about the role Lexapro can play with the Erectile Dysfunction side of things. When I was trying Wellbutrin I kept it in mind but by the time I got on Lexapro it was the last thing on my mind because sex was impossible as it was. About a month later, I got on Cialis based on a small study regarding benefits when used with Xiaflex. I wonder what would happen without Lexapro along with the Cialis but don't think now is a great time to come off Lexapro.

I'm actually not afraid of surgery. Ready for it really but just want to see the Xiaflex through to the end first for probably my own curiosity. I showed the traction and VED devices to my wife and she thinks it would be a good idea as well so will be on the market for those soon.

Thank you all!
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Peyronie's Apr 2019 -- small rightward bend, Erectile Dysfunction -- Jan 2020 severe upward bend, Cialis started May 2020, Xiaflex started Jun 2020 -- little results after 3 rounds, 4th Round Xiaflex Jan 2021 -- began using RestoreX
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