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Author Topic: 15 months and it is still getting worse  (Read 701 times)

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Deadman

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15 months and it is still getting worse
« on: August 09, 2018, 03:16:48 PM »

I’ve had Peyronies now for 15months. I was on cialis, colchicine used a dick brace nothing worked. Had 2 doctors opinions with different mindsets who suggested the same treatment as above. When I first was diagnosed 3months after the injury that caused it I was on pentax as well but that turned out to not be effective for me. The other treatments weren’t effective either and so now my treatment is time in the faint hope that a miracle will happen and I will get some improvement in my health.

The major problem with this disease is that it has been “known” about for 300-400years and still no one knows how it occurs, why it differs in each individual case, how to halt the damage pain or deformities, how to recover and heal at least slightly, or how to cure it.

My situation is pretty bad as I have worse than no support, I have people that I know, they’re not my friends anymore, and I have family members that dismiss what I’m going through. They have told me it’s not so bad, that at least I’m not in a war zone in africa, seriously some people are completely detached from reality when they say things like that... I have also told them that I am in constant pain, that I got weaker from the medicine, that I find it extremely difficult to walk or drive. That I can barely get through the day. But no one cares, instead they choose to have arguments with me, saying that I have a negative outlook in life. This was after I told them that I had attempted suicide 10 times since I got this disease, it’s up to 30 attempts now. I just drive around trying to find a 100% guaranteed way to die, don’t want to involve others so I look for cliffs, walls and trees to drive into, bridges and buildings to jump off.

The only reason I don’t go through with it is that I haven’t found that 100% death spot yet. I know my life would be much worse if I “survived” a real attempt, if I lost limbs and I was still alive afterwards that would make it even worse. So I’m just hanging in there even though I felt that I’m dying a little more each day. I have also gotten very weak physically as I used to be a gym junkie and now I can barely walk around.

It’s really sad that society tells men to open up about their feelings to ask for help. Well I have always asked for help and been an open book when talking with others, I have also been there for others when they were going through horrible times. I guess I was naive in that I thought at least one person in this world had my back, but that is not the case.

This is a really horrible disease to have and more research needs to be done to find the causes. Even though it’s very rare that boys and men get this disease, prevention and avoidance of it would be for the best. Unfortunately we don’t even know why it happens or how it will effect individuals as peyronies is a very individual disease. We also need to do more for men’s health globally and the global acceptance and helping of men and boys when they are sick, injured or without support.

For those men and boys who are also suffering from this disease I wish the best of health for all of you. And I hope that you get more support in your life with this disease than I got. And for those who do make a full recovery, I ask you to dedicate the rest of your life to curing this disease to increase research and funding into this disease and to help all males in need of support. If I ever make a full recovery I will do the same, but for now I don’t have the strength to help.
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TDix

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Re: 15 months and it is still getting worse
« Reply #1 on: August 09, 2018, 04:04:25 PM »

Hang in there bud, and know that suicide is definitely not the way to go.  I had a childhood friend that attempted, and even my son, and I can tell you that as bad as it may seem, there is always a better day around the corner, you just have to look for it.  I also have struggled with thoughts, and especially with this condition, but I could not do that to my friends and more importantly my family.  This is a place of support, and though I don't know you, I am here to listen and offer any insight I can.  You may feel alone, but you are not.  Thank you for joining, and know I am always there to listen if need be. 
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45 yrs old, 1.5 yrs diagnosed, 3 shots of Xiaflex resulting in hematomas/burst dorsal vein/nerve damage, healing for 6 more weeks, surgery likely option, Dr Barton Wachs and consulting Dr's Lue, Gelman, and a few others

hope794

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Re: 15 months and it is still getting worse
« Reply #2 on: August 09, 2018, 06:52:58 PM »

Deadman, all here are struggling with this horrible disease - so we can understand you.

I would like to give you 3 tips to overcome, or at least improve your psychological situation a little bit.

1. I don't know if you have erectile dysfunction or not - but if you haven't, you have a huge advantage. However, keep in mind that with PTT (Penile Traction Therapy) you can have HUGE results and reduce your curvature tremendously. There are many friends here who can help you with this, just go in the right section of the forum and ask your questions. I'm sure that a lot of people will try to help you and share their experiences.

2. If you look in "Developmental Drugs and Treatments" section, i just wrote a post - "Wake Forest - Good News". Wake forest is one of the most important universities in the world and has just begun a clinical trial specifically aiming at solving Peyronie's disease. They are planning to finish the procedure in 1 year, then there will be a 3 year follow-up, and if things will go all good, we will have an effective treatment, even if it will be expensive. But personally i would pay any amount of money to have my penis back.

3. If you're considering suicide, then just consider an implant. I know it's not a great solution, but you can overcome both erectile dysfunction and curvature with an implant and, even if you will not have the biggest cock ever, you will definitely return to life and have ZERO ISSUES to struggle with, for the rest of your life.
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24 yo from Italy.Peyronie's probably since 2014.Since then,penis bends of about 10-15°, with a slight twist to the left.Moderate erectile dysfunction since 2 years and things getting worse.From pornstar-like to moderately depressed,but still fighting for a solution.

TonySa

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Re: 15 months and it is still getting worse
« Reply #3 on: August 09, 2018, 11:15:50 PM »

This devastating disease can lead to severe depression.  I’d seriosly consider antidepressant medication and even cognitive behavioral therapy.  Not only will either or both help w your depression but then you’ll be much more hopeful about treatment for your peyronies and able to implement a treatment plan for it.  Please let us know how it goes, we’re here for you.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

nosexlife

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Re: 15 months and it is still getting worse
« Reply #4 on: August 12, 2018, 09:28:57 PM »

I'm now 3 years into my peyronies diagnosis and I have experienced horrible shortening of the shaft......I'm completely defeated and have lost ALL confidence with women....and to be honest.....no confidence in myself either.....I have a wonderful 83 year old mom,who is starting to see her health fail....i'm only living to help and love her to the end......my life seems to not have any purpose other than that...….thanks for listening
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haogq

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Re: 15 months and it is still getting worse
« Reply #5 on: August 16, 2018, 11:28:40 AM »

Stay strong man. I believe every man with this cruel disease was or is suicidal. It completely changes men's life. I cannot stop thinking it even for a second whenever I am awake.
But we have to keep fighting. There are always people with much worse condition than us but still optimistic about their lives, e.g. survivor from severe accidents, people w/ paraplegia,etc.  I dont know your age, but here on this board we have members in their teenage, and i myself is in my 20s. There must be much more sufferers from Peyronie's in our society you just can't tell. We are not alone. Also as some members pointed out, there will be more effective treatments coming out.  While there's life, there's hope.
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Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as age, date of onset, symptoms, treatments tried, etc  THANK YOU!

Worrier77

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Re: 15 months and it is still getting worse
« Reply #6 on: August 25, 2018, 02:01:07 PM »

Hey bud,

Sorry to hear that you've been going through personal issues and that you've been dealing with this terrible condition by yourself.

Even though things look bad, suicide is not the way to go. When my dad committed suicide, the entire society was shaken. My family has been shredded to pieces for over 10 years and it isn't going to get better.

This is not how you want to leave your legacy, trust me. There are far worse things that happen when you put yourself in the ground.

If you have insurance, you should see a therapist. Even venting to a person face to face can be a world of difference.

Stay safe,

Worrier
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