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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Feeling down  (Read 1259 times)

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Breadman66

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Feeling down
« on: January 18, 2019, 01:33:12 AM »

I’m 52 and was diagnosed in April 2018. Curvature came out of the blue. One day straight then 3 days later a 60 degree curve upwards. No idea how/why. First Urologist gave me Pentox but was doubtful it would help. After 2 months I tried another Urologist who specialises in Sexual Health. He said that if you see no results with Pentox in 2-3 weeks it’s not going to help. He suggested either surgery or Xiaflex. I’ve now had 2 cycles of Xiaflex and can feel a decrease in Plaque but no change in the curvature. Wondering whether to continue? On the side I’ve invested in a couple of traction devices but other than increasing the length of my penis and foreskin they haven’t helped the curve at all. My penis looks and feels foreign to me. I’m getting so depressed about it. There’s no one I can talk to except my wife and she just doesn’t get how important that part of your anatomy is to a man. I’m just lost at the moment (probably drinking too much to cope ) and don’t know what to do. Sorry for being such a downer. Think I just need to get it off my chest.
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osakadan

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Re: Feeling down
« Reply #1 on: January 18, 2019, 02:06:17 AM »

Sorry to hear man. Exactly how it happened to me when I was 51 (now 54). Nothing has helped me and I am still undecided about surgery. I go up and down about it thinking maybe that part of life is just coming to an end and then at other times I feel I have to so something about it.

Talking to partners is difficult. Mine has been sympathetic but it doesn't help when they say things like "Oh...it looks cute". Not for me any way. No one gets it except for others who have been through it .....and a mate of mine who lost all sexual function when he was disabled. So I think to myself at least I can still ejaculate and that helps me mentally sometimes but at other times it is equally depressing.

I have put off the surgery decision for now. The past year or so I have been dealing with another possibly related issue. I had my urethra rebuilt in December. A month later still no erections. Doc says they should return in 3-6 months. And then I guess I will need to decide about surgery for curvature.

Some people here say we should be so wrapped up in this and that life goes on etc but I believe we are going through a shock then grieving process. For many humans sex is an integral part of life and it is upsetting that we lose it to a degree. I can get over the change in shape but the fact is that I can't enjoy sex like I used too and penetration is difficult to achieve and almost feels like it isn't worth it when 10 seconds later it slips out because of the curve and any movement. I'm grieving.

I don't know what will bring you peace or comfort but feel free to bitch here as much as you like if it helps you.
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Bubba dawg

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Re: Feeling down
« Reply #2 on: January 18, 2019, 03:37:35 AM »

You noticed some improvement with xiaflex so why quit? Xiaflex is no over night cure. 4 cycles is the complete treatment. Many go 5 and 6 cycles. I did 5. May do more. Doctor said real improvement would come after 3 and that was true for me. But everybody responds differently. We have a disease with no real cure yet. I wouldnt opt for Surgery until xiaflex stopped showing any improvement to where you can live with the results
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5 Rounds of Xiaflex. Good results.

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Breadman66

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Re: Feeling down
« Reply #3 on: January 19, 2019, 04:08:17 AM »

Thanks for the replies guys. Like everyone in this situation I have ups and downs. Feeling a bit better today  :) Osakadan thanks for the sympathy and support. Hope things pick up for you. Bubba Dawg it’s a question of cost with the Xiaflex. In Australia medical insurance won’t cover it. So I’m having to pay AUD $3600 for each cycle. I’m most likely going to do the 4 cycles and with the 4th cycle at least the drug is free - not the Urologist fee though. I’m feeling like the plaque is decreasing and getting softer but I feel my entire penis is softer, not as firm, as it used to be. Maybe from all the modelling/stretching I’ve been doing. Fingers crossed I’ll see some improvement over the next 2 cycles
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Bubba dawg

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Re: Feeling down
« Reply #4 on: January 19, 2019, 04:34:25 AM »

I had no way of knowing you had to pay for the treatment. Insurance and the doctor mix up cost me some money too. That is one reason I didn't go 6 cycles yet. I have had a lot of other unexpected expenses. I also have some calcification, so not sure I could improve any more. Just have to sit down with the doc and talk about that. Sad, but we don't have many options with this disease. You say cheaper treatment are not working for you. If surgery is not covered either, then you may have to get a loan from a bank to continue Xiaflex. You can always get Cialis if your erections stay soft. They may improve when the treatments are over. I now have firm erections. Anyway having a straighter dick is more important. You can always get viagra or cialis. This is the problem in many countries including the USA. People can go deep in debt or bankrupt fighting diseases. This disease can cause you mental as well as physical problems. Should be covered in your country imo. A lot of people here can't afford or don't want Insurance. They are not old enough to get government medicare. So this disease would wreak havoc with their finances too
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5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

osakadan

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Re: Feeling down
« Reply #5 on: January 19, 2019, 10:33:51 AM »

Thanks for the replies guys. Like everyone in this situation I have ups and downs. Feeling a bit better today  :) Osakadan thanks for the sympathy and support. Hope things pick up for you. Bubba Dawg it’s a question of cost with the Xiaflex. In Australia medical insurance won’t cover it. So I’m having to pay AUD $3600 for each cycle. I’m most likely going to do the 4 cycles and with the 4th cycle at least the drug is free - not the Urologist fee though. I’m feeling like the plaque is decreasing and getting softer but I feel my entire penis is softer, not as firm, as it used to be. Maybe from all the modelling/stretching I’ve been doing. Fingers crossed I’ll see some improvement over the next 2 cycles

Wow! That is expensive....I'm from Australia too. It wasn't an option for me as I didn't see a doc early enough. Plus I was dealing with urethra problems (probably caused the peyronnie's). Just had a urethra reconstruction (urethroplasty) last moth. That has gone quite well so thinking more seriously about the straightening op.
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Stabler

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Re: Feeling down
« Reply #6 on: January 19, 2019, 01:19:38 PM »

Hello Breadman66,

Did the Dr that gave you the Pentox also recommend traction and or VED as well? While the Pentox will soften the plaque it will not help the curve. Visit the following pages to get more information and post questions to the members there.

Vacuum Erection Devices (VEDs) for Peyronie's Disease - PDS - Peyronies Society Forums

Traction and Traction Devices for correcting Peyronies Disease - PDS - Peyronies Society Forums

Stabler
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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.

Breadman66

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Re: Feeling down
« Reply #7 on: January 20, 2019, 08:41:50 PM »

Hi Stabler. Neither Urologist mentioned traction or VED until I mentioned them. Both said traction could work in theory but neither thought much of VED. I bought a VED and feel like it could be good for penis health - blood flow etc. But I’m not convinced that it helps curvature- which is the main issue for me at least
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TonySa

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Re: Feeling down
« Reply #8 on: January 20, 2019, 09:56:26 PM »

I’d suggest using both as VED time is minimal.
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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.

Stabler

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Re: Feeling down
« Reply #9 on: January 20, 2019, 10:43:29 PM »

Breadman66

Please visit the boards I mentioned and talk to those that have used both. As I said the Pentox will help soften the plaque but if you aren’t doing VED and or Traction you aren’t doing anything to help the curvature. VED will help the blood flow you are correct about that but it is also beneficial for curvature. Talking to other members can help you decide which might be better for you to try but there are many members that do both.

Stabler
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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.

james1947

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Re: Feeling down
« Reply #10 on: January 24, 2019, 06:52:26 AM »

As an introductory, this topic is ended.
Please continue the conversation on the adequate boards


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
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