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Author Topic: Advice for new sufferers  (Read 3457 times)

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bummedout

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Advice for new sufferers
« on: June 07, 2015, 03:11:04 PM »

As I reflect on my experience with Peyronies over the past 7 years, and as I get new members asking me for advice, I can't help but think that the best option is honestly, to not do anything at all other than stay healthy and take care of your body.  Try to get your mind wrapped around the fact that this is your penis now.  It's not likely to get any better, only worse if you mess with it too much.  From my experience, I would have been a lot better off had if I taken that approach.  Now I realize that everyone's situation is different and that some men suffer much more initially.  If you're already past the point which you can no longer have satisfactory intercourse then I'd say do what you think would be best for you, whether it be pills, injections, surgery, implants, etc. but it is important to beat the disease mentally first.  This is just my opinion.

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james1947

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Re: Advice for new sufferers
« Reply #1 on: June 07, 2015, 03:38:51 PM »

bummedout

You are right saying:
Quote
Try to get your mind wrapped around the fact that this is your penis now.
&
Quote
...it is important to beat the disease mentally first.
But you are very wrong on the sentence bellow, even your experience make you to think so:
Quote
...not do anything at all other than stay healthy and take care of your body.
Many forum members got substantially improvements from different treatments.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
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LWillisjr

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Re: Advice for new sufferers
« Reply #2 on: June 08, 2015, 07:30:01 PM »

I somewhat understand your point. Everyone is different.

Some guys come here with a slight bend or change. They can still get and maintain an erection, and able to perform sexually. So yes I understand that if Peyronies has only caused 'mild' changes then be very careful with treatments. But what we will never know is if trying various therapies kept things form getting worse. I understand for some things can and do get worse.

And then there are those like myself who got to the point where we could not perform sexually, but wanted to still maintain a sexual relationship with our spouses. And I was willing to try whatever it took to do so.
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bummedout

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Re: Advice for new sufferers
« Reply #3 on: June 08, 2015, 10:03:04 PM »

Yes, I guess it's really hard to know what would or wouldn't happen.  It's important that we all make well informed, thought out decisions though.  That's really the point I'm trying to get across to newer members.  Let's all learn from each other's mistakes as best as we can.  I think we all realize that not all doctors have our best interest at hand, and that some of them might steer us in, not the best directions.
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Sta

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Re: Advice for new sufferers
« Reply #4 on: September 14, 2015, 11:29:33 AM »

I am in 4th year of Peyronies Disease progression. I tried alot of things with no success. Here is the most important summary I can provide:

1. Medical science is at the very shaky ground here. NO REAL CURE exist. All most all advices are very controversal if not dangerous...
2. It is not just scar it is rather a keloid-like lession.
3. Rest help the best. Try sex/masturbation abstinence.
4. Chronic overuse (including masturbating 2-3 times a day ;) may be THE TRIGGER. Serious injury is not obligatury for Peyronies Disease to develop. Just overuse is enough (FYI alpinists get Duputryen contracture as well due to overuse). I need to mention that is not the cause but a trigge. It needs something else to kick in...)))
On a good side:
4. It seems that impotetntion risks a Peyronies Disease cause largely overwstimated.
5. I practically proven Peyronies Disease does not caues infertility ;) At least for me.
6. Size/shape issuse w/regard to how women see it are largely overestimated.
7. Meditation/Relaxation helps a lot as Peyronies Disease is connected to neiroendocrine system dysregulation (as well as keloid by the way). But you must invest a lot of time in practice before getting results.

Sorry for awkward English



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Born 1985, Peyronie's since 2011/12. Lost approximately 3 cm of length and seriously bottlenecked.

pfract

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Re: Advice for new sufferers
« Reply #5 on: September 16, 2015, 11:04:41 PM »

Sta...practically proven peironies doesn't cause infertility?  Keloid? ????? ??- dude... What are you talking about?

Sta

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Re: Advice for new sufferers
« Reply #6 on: September 17, 2015, 07:23:25 AM »

Sta...practically proven peironies doesn't cause infertility?

My wife got pregnant after 3,5 years of my Peyronies Disease history....

Quote
Keloid? ????? ??- dude... What are you talking about?

I am talking science and my personal experience. Both may turn out to be false over time. Regarding your comment do not hesitate to check this out (just one reference I quickly found):

AbstractSend to:
Int J STD AIDS. 2005 Mar;16(3):187-94; quiz 94-5.
Towards an evidence-based understanding of Peyronie's disease.
Cavallini G1.

Abstract
Aetiopathogenesis and therapy for Peyronie's disease are summarized below.
AETIOPATHOGENESIS:
(a) Plaque fibroblasts and their products provoke an immune response; (b) there are chromosomal differences between plaques and normal albuginea; (c) plaque fibroblasts are immortalized cells; (d) plaque fibroblasts demonstrate an impaired mitochondrial activity. These patterns provoke inflammation and they compel us to regard Peyronie's disease as being more similar to keloids than to scars.

THERAPY:
Medical therapy plays a pivotal role in the management of Peyronie's disease and should be performed prior to any surgery. Intraplaque collagenase, intraplaque verapamil, intraplaque interferon, oral acetyl-L-carnitine, oral propionyl-L-carnitine and oral colchicine have proved effective in Peyronie's disease. With the exception of collagenase, these drugs have displayed a number of activities whose final result is to improve immune response, to inhibit inflammation and to inhibit fibroblast metabolism and replication. Therefore, the primitive replicative (rather than reactive) nature of the disease is confirmed; this knowledge may be of help in the identification of new non-surgical therapies for Peyronie's disease.


In fact this article is quite brilliant among the tons of BS published over last few years. Another fact is I had skin surgery on my back and develped Keloid. So my personal experience also proposes Peyronies Disease is not just penis disease....
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TheE

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Re: Advice for new sufferers
« Reply #7 on: November 17, 2015, 04:01:35 PM »

[Full quote removed by Admin - Please read the forum rules regarding quoting prior posts]

I agree with your ideas, I quit smoking and other bad habits for six months before my peyronies came about but I was extremely stressed with my job. I feel that abstaining from sex helps a lot and I do overestimate how bad the loss in size is. I've lost an inch in girth under the glans but girls don't notice. I thought I'd lost length but after abstaining for a week and measuring stretched erect length it was almost the same as before. It really is a mental battle sometimes.
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race2end

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Re: Advice for new sufferers
« Reply #8 on: November 23, 2015, 02:59:36 PM »

Agreed. I have had two 'waves' of mental distress over this in the past months, first when i was diagnosed, and then again this past week when traction may have made it worse. Now i come to the realization that I have little real control how this goes, except do what the Uro says to, and advice here. The mental part is the hardest. Wife is very understanding and that helps (she has Crohns for 30 plus years, so gets the 'no cause no cure' deal). In the end I am working to get 'used to' this and handling what is coming next if it should. 
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Perspex

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Re: Advice for new sufferers
« Reply #9 on: March 21, 2016, 06:04:55 AM »


3. Rest help the best. Try sex/masturbation abstinence.
4. Chronic overuse (including masturbating 2-3 times a day ;) may be THE TRIGGER. Serious injury is not obligatory for Peyronies Disease to develop. Just overuse is enough (FYI alpinists get Duputryen contracture as well due to overuse). I need to mention that is not the cause but a trigge. It needs something else to kick in...)))
On a good side:


I'd like to respond to this idea. I had been abstaining from masturbation and sex for the month before i got my first symptoms. I may have had erections at night, but I found that generally my sex drive was lower as i ejaculated less. In some kind of horribly ironic way I was trying to respect myself and my body/penis more. Regain sensitivity, be aware of my sexual energies etc etc. Then one day I got an erection after a month and looked at it and I had a bend... the start of my peyronies. Prior to this month I had not had sex for perhaps 10 months. In that 10 months I went through moderate to low levels of masturbation.

In summary - in my case, masturbation and chronic overuse seem extremely unlikely to be the cause or trigger.
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skunkworks

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Re: Advice for new sufferers
« Reply #10 on: March 21, 2016, 06:17:17 AM »

It is an oft discussed topic, and I'm 100% in the use it or lose it team. Frequent erections are incredibly important for penis health, so though you should obviously take care to be gentle, don't abstain. One thing I have noticed though is a quickie of either sex or masturbation tends to leave me a bit sore, but if it lasts for 10min to an hour, it seems to have a very positive effect on my penis health.

NeoV

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Re: Advice for new sufferers
« Reply #11 on: March 21, 2016, 07:09:11 AM »

It's certainly a balance and it's important that cases such as Perspex's are highlighted rather than claiming one side is the key to success. Both are crucial and must be understood as part of penile health.

The one thing I'd like to say however, is that most guys are not abstaining, especially my age. Coming in here at 18 and after reading Old Man, George, and James say you must "use it or lose it," I missed a crucial part to recovery. While their advice has an important truth to it, I think it may be easily misunderstood in the absence of advice to abstain.

I was constantly checking my erections, masturbating way too much and having my penis bend nearly 360 degrees afterward and just not understanding I was permanently damaging my penis as inflammation became trapped in areas that are now scarred. I think it's rare to find a guy abstaining for longer than a few days, but I understand many guys don't have sex or masturbate much due to a variety of life style differences, but there were very few people advising one to abstain and avoid all erection checking or "edging" when I was first using these forums, and even today I see very few people advocate it and a lot of young guys obsessively damaging their penises.

Now that I have rested and and have learned how to masturbate and have sex properly, (it's extemely confusing believe it or not for me) I am seeing how "use it or lose it" applies, and taking sex and masturbation as chances to completely fill out my penis.

I hope that guys can come in here and understand the importance of both, which can be hard to communicate.
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Perspex

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Re: Advice for new sufferers
« Reply #12 on: March 21, 2016, 08:11:32 AM »

It seems intuitive to keep the blood flowing.. get nutrients and oxygen in there...break up that plaque. That's a nice easy concept to grasp on to. I don't necessarily believe that makes it true... but it seems to make sense for now. With real moderation though. I dont want to be over doing it, totally out of kilter with my natural desires in a kind of regimented excercise of a muscle. It seems like all advice points that way. Keep masturbating relatively frequently. This kind of flies in the face of how I am attempting to view my sexual behaviour... but this condition throws everything in to confusion

Its a very odd situation to be in. It's odd to feel fear and anxiety when you see your erection... but then know you should probably carry on. Pushing through to dutifully masterbate for health issues. Its scary every time in case there is a worsening of the condition. It means mixing sexual feelings up with much more neagative feelings.. i dont think this is healthy either. Also, I don't like to use pornography.. buts its quite difficult to get myself in the mood while also considering the potential demise of my love/sex life.

I'm assuming most people who get peyronies have not been abstaining. So the 2 - one month long periods of abstinence in the past year are unlikely to be the cause. Its not as if i didnt get erections in that time, i just didnt ejaculate or masturbate

I think that over the years there have been a few slight traumas and damage here and there during sex. For many years now I have had reduced sensation in the head and possibly not as had at the tip as it was, but this was not a problem. I think the peyronies probably did not occur because i was not promoting stimulation... but because of the inflammation of previous damage somehow. 

This has dragged a bit - but sod it I'm carrying on :) Then there is pentox! a drug that seems to work for some and not for others.. but looks promising. But one thing seems very likely.... negative side effects. It basically has the effect of a poison on us in some ways. And we will need to take this poison for a long long time..... with a chance that it could "possiby" help reduce or stop progression of the condition... but absolutely no guarantee

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Sta

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Re: Advice for new sufferers
« Reply #13 on: April 20, 2016, 04:36:01 PM »



but because of the inflammation of previous damage somehow. 


The thruth be told!

"overuse" should not be constant and continuous before you get symptoms. E.g. a lot of us had "masturbation maraphons" in nineteens and that IMO could be enough to develop Peyronies Disease decades later. In a proper condition. Psychological stress incereases inflammation all around the body, and it somehow manifests the most at the area of chornic (though mild or minor) trauma. It is like professional gimnasts in the youth quite sport, and after several years in off-sport life they get kind of chronic joint inflammation....I think that is how it works.

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