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Author Topic: New here,have been struggling with peyronies 5 years now-30 years old  (Read 1216 times)

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aob1987

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hello everyone, I am happy that I have decided to reach out about peyronies.This has been a very difficult thing to discuss with my family,with the exception of my wife so I am happy to find a sense of community here.There is a feeling of isolation that this disease can create.This disease has wounded me in ways that I had never even considered as well as causing me to re-evaluate my entire sense of self.I am married to a beautiful women whom I have been with since 18.for many of these 12 years we have had amazing sexual experiences that brought us very close and were mutually satisfying.When I first discovered I had peyronies disease I was somewhat confused by it,as it manifested as a strange pain during erection.I largely disregarded it as prostate issues(which I had experienced in the past)and continued on.I than felt a small bump mid-shaft,and a scar beneath the glans of my penis.five years has gone by,many of the plaques will soften and disappear and new inflammation will pop up,causing a new one.i suffer from erectile dysfunction and performance anxiety because of my peyronies currently and carry a sense of shame that is difficult to shake even after successful intercourse.I have been trying to cope,as my sex drive is still consistent with a thirty year old mans drive, I am unable to perform maybe 40% of the time.i will use other forms of stimulation to help my wife reach orgasm,which works.however,i miss being able to make love to her.I have considered suicide because of the emotional pain this has caused.as of typing this,i have not been able to have intercourse for about 2 months.mainly I am afraid of re-injuring or not being able to keep a strong erection.I am at my wits end.I am sure this story has been told many times,however it is a emotionally and physically difficult disease to have which feels strangely unique to the individual causing feelings of isolation and fundamental difference.hoping to find some help,thank you for taking the time to read this lengthy thread that has taken 5 years to leave my mind.
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Oh Boy

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #1 on: January 20, 2018, 07:28:10 AM »

Have you seen a urologist that specializes in Peyronies. If your situation is a mature one I would suggest looking into xiaflex shots.
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Tsanchez12369

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #2 on: January 20, 2018, 11:00:31 AM »

Welcome aob.  A good starting strategy is finding a specialist who does ultrasound.  Then usually pentox, daily cialis, traction/VED and xiaflex.
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Paolo

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #3 on: January 20, 2018, 11:51:43 AM »

Welcome aob, you have absolutely no need to carry a sense of shame, don't, it will achieve nothing other than driving your emotional state to the gutter, easy to say I know but please don't.
You have many positives in your life, sounds like a loving marriage for one  :)
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Crookid

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #4 on: January 20, 2018, 02:09:04 PM »

Hi AOB,
There is a lot of good people on this forum that I’m sure you will find helpful. You are not alone and like Paola said you are fortunate to have an understanding wife. I would highly recommend you find a URO or better yet a Peyronies specialist. My situation is very similar to yours but I haven’t suffered as long a you have. I just got insurance approval for Xiaflex shots so hopefully that will eliminate my erection pain and reduce the curve. Good luck and keep posting!
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betterbend

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #5 on: January 22, 2018, 10:50:07 AM »

Aob - I feel for you, the current rate among men is listed at 10% for this condition, and its probably higher, so there are many men, a lot you might know, who also are dealing at some level.  I have told two of my friends, and my wife obviously, and they were supportive, maybe someday you will feel its something you can share with somebody.  I intend to also mention it to the rest of my close guy friends, probably when I have had a few drinks.  I feel they should know, its a mans health issue.  Try to find a Peyronies/sexual medicine specialist.  They might be able to help you get back to a functioning sex life.  Good luck
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aob1987

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #6 on: February 01, 2018, 07:35:50 AM »

thank you to everyone that replied to my post. I have been seeing a uro for awhile now,he has told me that my case is not too serious,as I do not have a very high degree of curvature.I have heard of xiaflex,my uro had mentioned it to me about a year ago.had used Cialis for awhile but the price constraints made it difficult to afford.i found it effective at reducing pain, increased blood flow etc.i am able to obtain erection naturally however it can be difficult to maintain at times.The level of frustration one can feel when unable to have intercourse can be maddening.one phenomena I have noticed is plaques fading with time,where I can barely notice aside from a soft lump,and then another will appear once the prior one has healed.Is this common?can be very hard to deal with the psychological aspect of peyronies as I feel that once pleasant sexual thoughts can refocus on the difficulty that I have,or a fear of re-injury.can make me feel somewhat sexually apprehensive when I am really focused on it.thank you for the replies everyone,i was concerned that no one would reply as my experience is probably somewhat typical.
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betterbend

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #7 on: February 01, 2018, 11:12:36 AM »

Cialis for daily use is cheaper than the higher strengths, by a lot, but it is still expensive.  Viagra just went generic, which is about 1/2 the price now, but still not cheap. It will drop more as more companies go to market with a generic.   Sildenafil at the 20mg strength can be had for less, but your doctor might not want to write for it as it is not indicated for ED.  You should definitely be having this discussion with a urologist.  It is possible to get insurance coverage for these drugs too, but you have to fight, along with your doctor, with the insurance for it.  but they do cover it.

Also, not passing judgement on your uro, but find a new one, not being unable to perform 40% of the time, at 30, and not having intercourse for 2 months is not mild or kind of normal!    This is your disease, own it, do your homework, take full control, and dont accept that this is how it has to be.  There is a lot that can be done to improve your situation, if you find the right doctor, and you are lucky to have a supportive spouse.  Also let us know where you are from, maybe somebody can recommend a good Peyronies guy in your area... Good luck!
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Tsanchez12369

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #8 on: February 01, 2018, 02:26:00 PM »

A doc should be willing to write a script for sildenafil 20mg.  You can price it on goodrx.com. Also, generic cialis—tadalafil can be bought cheap as a liquid peptide.  I use blue sky peptides with success—no script required.
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betterbend

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #9 on: February 01, 2018, 02:48:25 PM »

Unfortunately, I know some people where the doc's wouldn't write for it... again a decent urologist should especially when you talk price differences with him ..
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Tsanchez12369

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #10 on: February 01, 2018, 08:49:20 PM »

Find a new doc if needed, even a PCP should do so.
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ronjohnson09

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #11 on: February 02, 2018, 03:45:54 AM »

The last time/first time I went to a urologist that claimed he knew a lot about the condition he told me that pentox was ruled out as being helpful.  He suggested stretching and modeling against the curve as the only answer.  I think the hard part about this disease is no one knows exact ly what will work for each person.  I am doing a combo of vitamins suggested here, VED, and a traction device.  The Old Man has been very informative and responsive.  I figure coming at it from all angles should yield some results
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Tsanchez12369

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #12 on: February 02, 2018, 04:18:39 AM »

Sounds like a good plan.
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aob1987

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #13 on: February 02, 2018, 06:14:25 AM »

thank you again for all the replies,i realize that I may need to find a new urologist.I have been hoping to find someone whom deals with peyronies fairly typically,as I feel they will have more progressive methods of treatment.i am in the Hartford,ct area-if anyone might be able to suggest a new uro,i would greatly appreciate it.
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betterbend

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #14 on: February 02, 2018, 08:59:26 AM »

My doc doesn't think there are studies to support Pentox use.  Same with most medications.  There isnt a ton of money to be made by drug companies on these generic meds so the research money isnt there.  Xiaflex has the most data, but it isnt for everybody, and even if you are a candiadate it may not work. I have had my first two injections and I cant tell if it did anything yet.  Keeping my finger crossed.  I think that you have to work with your physician to get the right treatment for you. A lot of guys on this forum use pentox and say its helping, so despite the lack of evidence that it works, it seems to be working for some guys.  So I think you end up trying different things, coq10, pentox, traction, Xiaflex, cialis, etc and find the combo that gets some result. 

Here is a good website to search for a doctor... 

https://www.peyroniesassociation.org/
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LWillisjr

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #15 on: February 02, 2018, 08:22:09 PM »

Again I will caution that this is a site of doctors who have registered with this organization. It does not state in any way if these are doctors who are really peyronies experts.
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Les - 10 yrs Peyronies Disease free
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LWillisjr

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Re: New here,have been struggling with peyronies 5 years now-30 years old
« Reply #16 on: February 02, 2018, 08:26:17 PM »

Due to the number of posts this one is now locked as an introductory topic. Feel free to post in other sections of the forum.
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Les - 10 yrs Peyronies Disease free
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