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Author Topic: New Here -42yo - acute stage  (Read 1029 times)

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quasar

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New Here -42yo - acute stage
« on: January 09, 2019, 03:27:45 AM »

Here's my intro. I just got diagnosed today by my MD.

I'm 42 years old and about 2 1/2 months ago I felt discomfort on the top of my shaft. I didn't think anything of it. Then about a month ago I noticed an indentation forming to the touch. Now a month later the indentation is very pronounced like a band over my shaft and painful when erect.

I was very alarmed and I went to the Doc. He kept asking me if I remember injuring it because it seemed fractuared. But I could not think of anything except over the last 6 months I've been getting very intense sustained nocturnal erections. I think they were caused by the clomid I've been taking to elevate my testosterone levels. Has anyone else had this experience?

I don't know if that's what caused it but I since stopped taking the clomid. Next step is the doc is referring me to a urologist. He said 2 weeks to a month to get an appointment. In the meantime I just emailed my doc to see about a prescription to pentox since it seems to be recommended here. Also I've been using a hot water bottle on my D which seems to take away the pain and discomfort.

To everyone that helps put this forum together I really appreciate what you've done. This is obviously very distressing and this forum is saving my ass mentally.
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kingprof

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Re: New Here -42yo - acute stage
« Reply #1 on: January 09, 2019, 07:52:28 PM »

Hi Quasar, First of all many of us on here suddenly developed our Peyronie's. It was that way for me. One day I got an erection and there it was, bent to the left with a dent. I don't remember injuring the my penis at all.  It's not clear from your post whether you have been diagnosed with Peyronie's? Did you see a Urologist? A Urologist should do an ultrasound and examine your penis. They will be able to see and feel the plaque if you have a Peyronie's plaque.  They will also be able to say something about the plaque, like whether it appears calcified or not. These are important things to know for treatment.

A penile fracture is very different and as far as  I know is an emergency condition that would require surgery right away. I don't think you would be able to have an erection with a penile fracture.
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58 yrs old, 45 degree bend to the left, noticed Peyronie's first in April, 2018. Three rounds of Xiaflex.

quasar

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Re: New Here -42yo - acute stage
« Reply #2 on: January 10, 2019, 02:40:41 PM »

Thanks for your reply kingprof,

I was diagnosed last tuesday by my MD. Still waiting for a referral to see a urologist. My doc thought I had fractured it in the past 2 1/2 months and that's why I developed peyronies. But I think I would have noticed if I fractured it. From what I've read here doctors don't have a lot of info about peyronies.

I asked him for a prescription for Pentox and he gave it to me (400mg 3 times a day). He also prescribed 600mg ibuprofen three times a day. I already feel a significant decrease in the pain and inflammation.

I'm doing my best to avoid erections since that's when I feel pain the most. When I have a nocturnal erection I'll wake myself up till it goes down.

I ordered ubiquinol, L-citrulline, and acetyl L-carnitine. From what I've read on the forum they sound helpful. Still not sure how much to take for best results.

I'm also trying manual stretching. I can usually angle it so it's right on the scar tissue. I just started doing about 15 minutes a day. I want to take it slow and see what happens. I use a hot water bottle on it first to heat it up. Heat really feels good and takes away the pain.

My doc said the urologist may want to give me injections but from what I've read on here I'm afraid to do that.

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kingprof

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Re: New Here -42yo - acute stage
« Reply #3 on: January 10, 2019, 06:25:31 PM »

Hi Quasar,

As I said, I'm pretty sure you did not fracture it. From what I understand, you would not be able to get an erection after a penile fracture and the only way to fix that would be surgery. I'm also pretty sure that injections are the only non-surgical option that has been proven effective in double blind placebo controlled studies.
Some fraction of Peyronie's resolves on its own, so you may find yourself in that lucky minority. There is also a proportion of people whose symptoms (curving, denting) worsen over time. I hope you are in the former group, but it is good that you are going to see a Urologist. I would research your geographic area and find one who has seen a significant number of Peyronie's patients. Injections in the penis are scary for sure. I'm currently finishing my second round of Xiaflex and it has been no walk in the park, but I'm confident in my Uro. Bruising, swelling, and pain to varying degrees are a given with the injections. The more serious side effects, which unfortunately some people on this forum have experienced are rarer but unfortunately do occur. The best thing you can do is find a Uro who has extensive experience with the protocols and with whom you can build trust.

I too am taking supplements like acetyl-l-carnitine and coq10. I sort of put that under the heading of minimally they will do no harm. Although given the current state of evidence there, I don't expect them to be particularly efficacious. Like many on this forum, I'm just trying all I can do to get better.

One thing that you should have your Dr. check is your testosterone level. There is a relationship between low testosterone and Peyronie's.
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58 yrs old, 45 degree bend to the left, noticed Peyronie's first in April, 2018. Three rounds of Xiaflex.

Bubba dawg

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Re: New Here -42yo - acute stage
« Reply #4 on: January 11, 2019, 01:31:05 AM »

You just have to over come your fears and get the injections. I was scared s***** less before my treatment lol But I was more afraid of no sex for the rest of my life
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Facing assimilation by the Borg.

tonyode

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Re: New Here -42yo - acute stage
« Reply #5 on: January 11, 2019, 03:03:22 PM »

Quaser...good advice from those above me. One word on my end, is make sure the Uro you are going to see, its trained, knowledgeable on Peyronies. The Uro my MD referred me to blew me off. Did a quick exam, said to come back in 6 months. That wasn't good enough so I did research and found a Uro in my area at a major university who was very knowledgeable and took a great deal of time examining me and going over my options. I then chose Xiaflex. The fear and anxiety were brutal. A needle to the penis is frightening! I have had two injections(round 1) and both were not near as bad as my  mind led me to believe. Don't get me wrong, it wasn't a pleasant experience. But other than surgery, or keeping it as is (or worse), this was the best available option out there. Just find yourself a good Urologist! Not all are knowledgeable with Peyronies!
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

quasar

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Re: New Here -42yo - acute stage
« Reply #6 on: January 11, 2019, 03:25:12 PM »

Thanks for all the great info and support guys. I'll definitely take your advice and look for a Uro who is knowledgeable and keep an open mind to injections. Hopefully the Uro I get referred to will be good.
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quasar

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Re: New Here -42yo - acute stage
« Reply #7 on: January 31, 2019, 03:39:42 PM »

Thought I would give an update. Went to the Uro and they prescribed me Vit E and colchicine. I'm having side effects from the colchicine so I had to cut the dose till I get used to it.
The protocol I've settled into is

Pentox 400mg 3x day
Vit E 1000 iu 1x day
Acetyl L-Carnitine 1200mg 2x day
Ubiquinol 100mg 2x day
L-Citrulline 1500mg 1x day
Colchicine only .3mg day -will add more

Also doing manual traction everyday.

Seems to be holding steady so far. Just maybe a slight progression. Keeping my hopes up.

Thinking of maybe adding VED and low dose cialis.

On another note- talked to my dad and he has peyronie's. My brother and my dad's cousin have it as well. I had no idea. So I apparently have the hereditary version of this. I have scarring in the same spot as my dad and it developed at the same age as him. He had a major curve that developed at the end of the acute phase. Hoping I can avoid that.
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tonyode

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Re: New Here -42yo - acute stage
« Reply #8 on: February 01, 2019, 12:02:22 PM »

Hi quasar. I am curious if your uro did an ultrasound on you? Did he measure ur curvature? Did he offer anything like the xiaflex injections? Other than that , sounds good. Remember , this is a marathon, not a sprint. Not easy to accept that when you first go through everything initially.
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

kingprof

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Re: New Here -42yo - acute stage
« Reply #9 on: February 01, 2019, 03:41:57 PM »

Well said tonyode. It is definitely a marathon. @quasar, hope you are able to stabilize without too severe a case.
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58 yrs old, 45 degree bend to the left, noticed Peyronie's first in April, 2018. Three rounds of Xiaflex.

TonySa

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Re: New Here -42yo - acute stage
« Reply #10 on: February 01, 2019, 07:49:37 PM »

Sounds like a good treatment protocol.  Low dose daily cialis and VED or traction can also help remodel he plaque.  Sounds like you’ve checked out the guide but just to be sure: Peyronies Survival Guide - Information for New Members - Peyronies Society Forums
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

james1947

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Re: New Here -42yo - acute stage
« Reply #11 on: February 03, 2019, 06:49:12 AM »

This topic has ended as an introductory.
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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