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Author Topic: Overwhelmed  (Read 1918 times)

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Chaos

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Overwhelmed
« on: May 05, 2018, 12:44:57 AM »
Hi all,

I want to introduce myself into this forum.

I’m 34 yo and recently diagnosed with Peyronie disease.

I’ve been reading this forum for a couple of hours and decided to register. English isn’t my mother tongue so excuse me if I’m not clear sometimes.

I’m really overwhelmed because is in this forum where I really see how bad this is. My doctor only said some poor words, but didn’t explain me anything or what not to do.

I’ll create a specific thread with my story, but my doctor and I are both sure about what caused this disease in me.

Thanks for reading,

really depressed right now.

B
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james1947

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Re: Overwhelmed
« Reply #1 on: May 05, 2018, 01:05:59 AM »
Chaos

Proposing you to read first:
Peyronies Survival Guide - Information for New Members - Peyronies Society Forums
It will give you some basics regarding this disease and treatment options
Read as much as you can on the forum to get more knowledge and what to do.

Regarding you doctor, you must find a doctor that specializing in Peyronies.
Many urologists don't know much regarding this disease.

And don't worry about your English, big % of the forum members are not native English speakers  :)
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.
Got amazing support on the forum

john10000

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Re: Overwhelmed
« Reply #2 on: May 05, 2018, 03:30:11 PM »
Welcome to the forum you'll get through this.
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Chaos

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Re: Overwhelmed
« Reply #3 on: May 05, 2018, 03:43:01 PM »
Thank you for your welcome.
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Gabriel

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Re: Overwhelmed
« Reply #4 on: May 06, 2018, 06:32:51 PM »
Hello Chaos,

Welcome here, and don't worry: you've come to the right place.

It's absolutely normal to feel particularly sad and depressed when you have your first diagnosis. It will pass, and you'll soon be totally focused on how to deal with this condition and improve your symptoms.

In this, the forum will be a great help, as hundreds of members have searched and tested hundreds of solutions (for pain, curvature, hourglassing, psychological aspects...); the majority of them won't work for you, but a few ones will, as they did for me (after 7 months with the disease, 10% thanks to my uros and 90% thanks to the forum, I am pain-free during the day, I can have sex and my condition seems to stabilize a little). You just have to stay focused and strong, and thoroughly search, try, test and sort!

--> So, for the moment, do read and apply the "Peyronies survival guide", and consider buying a VED and a traction device very soon in order to prevent your condition from worsening (as you were diagnosed very soon, you can have good hope). Then do find a good uro, and do no hesitate in visiting half a dozen of them before making your choice!

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- 35 yo, Peyronies Disease with chronic pain, general hourglassing with girth and length loss since 09/01/17.
- Pain almost cured with Hirudoid cream and diet/lifestyle changes (see my topics on this); deformity still here, but partly reduced with traction + VED.

TonySa

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Re: Overwhelmed
« Reply #5 on: May 06, 2018, 10:38:17 PM »
B-what symptoms do you have?
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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.

Chaos

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Re: Overwhelmed
« Reply #6 on: May 12, 2018, 04:16:10 PM »
Thank you for your encourage words.

I have some moderated pain during erection/sex and a 32 degrees curve. Went to a specialist yesterday but nothing new. Kind of tried to sell me treatment... will see another one soon. Now in my ninth week with this.
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Chaos

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Re: Overwhelmed
« Reply #7 on: August 06, 2018, 02:48:13 AM »
Went to another specialist two months ago... and got an Rx and a ultrasound.
Good news: blood pressure and circulation perfect;
Bad news: lession completely calcified (is that a time record?). It’s about 2cm length by 1cm high by 3 mm width. Parallel to uretra, in the superior tangent zone of the tunicas.

I didn’t even measure the curve anymore. Quite sure is about 50 degree or more (up) and some 30 degree (left). May try some VED in the future. Taking 400mg per day of Vitamin E.

Masturbation is very painful, so no more within months.. Had sex with some pain... seems to be getting a little painless, hopefully.

I’m only happy when I don’t remember having this. My head and self confidence are oscillating a lot. This thing changes a man. For better or for worse, but you’ll never be the same.
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JohnR

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Re: Overwhelmed
« Reply #8 on: August 06, 2018, 07:17:43 AM »
Ask for Pentoxifylene prescription ASAP.
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50 year old, onset in Feb. '18, diagnosed in Mar '18, 4 rounds of Xiaflex completed, little improvement, mentally overwhelmed...Erectile Dysfunction issues, major anxiety issues now.

Stabler

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Re: Overwhelmed
« Reply #9 on: August 06, 2018, 10:55:52 AM »
Chaos,

Can you tell us what the new physician suggested for you after the results?

Stabler67
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Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

Chaos

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Re: Overwhelmed
« Reply #10 on: August 06, 2018, 12:41:59 PM »
Not sure if I’ll be able to handle the Pentox effects.

No more suggestions. First visit I made he told he just returned from a congress in Atlanta where Dr Lue talked about this disease and mention current treatments.

He won’t recommend traction. Too dangerous. Only Vitamin E.

He said to me nesbit surgery was the best option for me, but only if I really have problems having sex and only after waiting one year or more.

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TDix

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Re: Overwhelmed
« Reply #11 on: August 06, 2018, 01:07:29 PM »
Sounds like you are still in the active phase.  Oh, and welcome to the forum!  I am currently doing Xiaflex treatments, just finished first round.  Diagnosed a year ago.  The pain will subside, but the curve may get worse.  Or you could be one of the lucky ones and it disappears without a need for treatment.  Read as much as you can, and know you have support here.
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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

Stabler

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Re: Overwhelmed
« Reply #12 on: August 06, 2018, 01:53:47 PM »
Chaos,

Have you gone through our Specialists list to see if there is one located near you that could offer more relevant treatment protocols? The vitamin E is not going to be of any harm but will not aid in the treatment of Peyronies.

http://www.peyroniesforum.net/index.php/topic,4063.0.html

Stabler67
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Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

LWillisjr

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Re: Overwhelmed
« Reply #13 on: August 06, 2018, 08:00:10 PM »
This topic is locked as an introductory topic. Feel free to posts further questions in the respective boards on the forum.
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Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
66y/o  14 years Peyronies free
My History
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