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Author Topic: Thinking I might have Peyronies Disease. What to do next?  (Read 1005 times)

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Ajvine

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Thinking I might have Peyronies Disease. What to do next?
« on: March 17, 2020, 03:02:35 AM »

 I would really appreciate any guidance as this is something I have found very difficult to figure out or know how to handle.

About 4 months ago I started getting pain during erections, to the point I tried everything to not get one at all.  A month after the pain started, I was diagnosed with a kidney stone and that prompted me to go see an urologist. I told her about the kidney stone and that I have had pain during erections. She asked me if I had a curvature to any side and I said maybe a bit (I wasn’t 100% sure) and that I have had no injuries that I can think so.
She didn’t think it was important and didn’t physically check for anything on the first visit. She just said she thinks the pain is connected to the kidney stone so that when the stone is out it should get resolved.

Fast forward 1 more month, kidney stone is still inside. Painful erections still occur although I found that relaxing my anus (which is normally contracted) helped with the pain as well as using hand lotion for lubrication. Another month later I went to get a test where they put a camera through your urethra to observe the bladder and look for the stone. They just saw that it was still in my ureter and so I pressed the painful erection issue again and she told me the same thing, that she thinks it’s connected to the kidney stone.

Fast forward one more month, today. The pain seems to have gone for the most part, but now I can say there is a change in appearance. I should say that I feel that for a long time (7 years or more) I’ve had trouble maintaining an erection without physical stimulation for the most part; definitely got worse in the last year.

My penis now looks like it is hunching when hard (facing me) and the head doesn’t get fully hard some times. I have found I’ve had to pull the foreskin down for the head to get released from the foreskin and so the head can get hard. I have had (for I don’t know how long) something that looked like as if a vein in the shaft got thick and enlarged. I could press it and it gave way to the finger.  It was round and somewhat squishy right under where the head meets the shaft. It seems like it’s gotten a bit harder when erect last time I checked (almost like a small pebble). I can only feel it when it’s hard not when flaccid. I believe it has lost some length.

Curious facts, I started being vegan/vegetarian since April of last year. I started taking lamictal for seizures (I’ve read it has beta blockers). I was taking Keppra for the past 8 years but wanted to try something different since I thought the side effects were wearing me out.

I have an appointment for the kidney stone this week, so I would like to be prepared to know what to do/ask beforehand and during the appointment.

Some questions:

1)Does it sound like Peyronies Disease?

2)If it is, for mild cases is there a chance it goes away meaning it straightens back by itself after some time?

3)Should I straight up tell the urologist I suspect I might have Peyronies Disease?

4) Most importantly, what should my next step(s) be?

5) should I avoid masturbation or sex?

I would appreciate so much some type of info, this has taken a toll on my mental health I am in a time where my life has been crumbling apart from other reasons

Thanks
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28 yo. Diagnosed March 13th 2020 by Dr Hakim. Prescribed Sildenafil 20 mg before sex, will have Doppler ultrasound on July 25th. ESL 40 on the way and looking to get an affordable VED. Some pain during erections, slight hourglassing.

NeoV

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Re: Thinking I might have Peyronies Disease. What to do next?
« Reply #1 on: March 17, 2020, 03:44:20 AM »

Veganism very dangerous for penile health unless it is ketogenic and supplemented with CRITICAL nutrients for the penis, "carninutrients" such as ALCAR, ALA, CoQ10 and others. There is a reason why these supplements work for Peyronie's disease. If you have seizures, why on earth are you not eating ketogenic for life? Penile problems and seizures points to hidden metabolic issues. Whole wheat bread, pasta, and rice, are all very dangerous for the penis in my own experience and research.

Penile pain and some mild bending is exactly what it is. "Peyronie's" is a term that applies to a spectrum of symptoms originating from poor penile health and a tendency toward a fibrotic penile "environment" within the cells (more MMPs than TMPS, high tgf-beta), likely caused by metabolic and genetic problems and of course local trauma. Many men never get detectable scarring, or only get it decades later after being ignored by urologists until it can only be treated by surgery.

A urologist can only give you an ultrasound, which only shows more obvious scarring, and give you pentox and cialis. If you want to take those drugs, go for it, but an ultrasound won't show much at this point. Penile traction or VED will prevent the bending from worsening, reverse it, and even improve penile health.

Ajvine

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Re: Thinking I might have Peyronies Disease. What to do next?
« Reply #2 on: March 17, 2020, 09:36:43 AM »

For the seizure aspect of it, it’s not that I have them, it’s more that I had 2 like 10 years ago and I’ve been on medication ever since. I am not epileptic, it’s just they are being too careful imo. I am actually on the process of getting rid of it medication.

As for the veganism, I had absolutely no idea it’s been said it’s bad for penile health. I have many vegan friends and (I might not really know) but they all seem fine. It’s hard to believe that something like that is bad for your health as vegans are not a rare species. Maybe the supplement  part is important but I have no experience with anything. I can’t stomach ever eating meat again though.

I will try to dig more info in this forum, but would I have to take those drugs forever or until the problem subsides?
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28 yo. Diagnosed March 13th 2020 by Dr Hakim. Prescribed Sildenafil 20 mg before sex, will have Doppler ultrasound on July 25th. ESL 40 on the way and looking to get an affordable VED. Some pain during erections, slight hourglassing.

TonySa

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Re: Thinking I might have Peyronies Disease. What to do next?
« Reply #3 on: March 17, 2020, 07:20:59 PM »

I’d tevimmendcreadimgbthebsyrvuval guide before seeing the doc.  https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057
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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.

popopo

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Re: Thinking I might have Peyronies Disease. What to do next?
« Reply #4 on: March 17, 2020, 08:34:41 PM »

I'm not an expert. But from what I read/heard veganism is almost always a sure way to malnourishment. It's though, but the reality is that in nature you either kill or be killed. Even if you eat "vegan" you still kill other living beings in order to survive. Sure a tree/plant doesn't have a central nervous system, but it's still a living being that needs to be sacrificed in order for you to live. No offense, but if you wanna save the planet the only way to do it is by killing yourself or at least not reproduce. For your own health I'd stay far away from the cult that is veganism and start taking care of yourself again. A lot of people only realize how stupid they are/where for being "vegan" after developing conditions like anemia, skin problems, hair falling out, lack of menstruation in women, etc. Etc.

Difficult to tell if you have peyronies or not. Even doctors can't always detect it or tell you you have it unless the bend is very obvious or there is a visible plaque shown on the ultrasound. But if your penis is changing in shape or size I think you probably have some form of peyronies/penile fibrosis. I would rule out the possibility that it's connected to the kidney stone first.

Other than that I would look into VED/traction to correct deformities, but be very carefull not to overdo it and further injure yourself. Other than that you can try oral treatments like Pentox, Cialis and Viagra. Some supplements like L-carnitine can be helpfull as well. If nothing works and you keep getting worse an implant is most likely gonna be the only option, but if you can you better avoid any surgery and a good doctor probably wouldn't advice surgery unless you can no longer have intercourse anyway.

I hope in the future more treatments will be available, but for now this is all you can try I think. Oh and also look into pelvic floor theraphy. You said your anus is usually tightened which indicates that you probably have pelvic floor tension which can lead to penile pain and problems with your erections.
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Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

jan.schaller1958

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Re: Thinking I might have Peyronies Disease. What to do next?
« Reply #5 on: March 17, 2020, 10:54:24 PM »

I'm not an expert. But from what I read/heard veganism is almost always a sure way to malnourishment. It's though, but the reality is that in nature you either kill or be killed. Even if you eat "vegan" you still kill other living beings in order to survive. Sure a tree/plant doesn't have a central nervous system, but it's still a living being that needs to be sacrificed in order for you to live. No offense, but if you wanna save the planet the only way to do it is by killing yourself or at least not reproduce. For your own health I'd stay far away from the cult that is veganism and start taking care of yourself again. A lot of people only realize how stupid they are/where for being "vegan" after developing conditions like anemia, skin problems, hair falling out, lack of menstruation in women, etc. Etc.

Difficult to tell if you have peyronies or not. Even doctors can't always detect it or tell you you have it unless the bend is very obvious or there is a visible plaque shown on the ultrasound. But if your penis is changing in shape or size I think you probably have some form of peyronies/penile fibrosis. I would rule out the possibility that it's connected to the kidney stone first.

Other than that I would look into VED/traction to correct deformities, but be very carefull not to overdo it and further injure yourself. Other than that you can try oral treatments like Pentox, Cialis and Viagra. Some supplements like L-carnitine can be helpfull as well. If nothing works and you keep getting worse an implant is most likely gonna be the only option, but if you can you better avoid any surgery and a good doctor probably wouldn't advice surgery unless you can no longer have intercourse anyway.

I hope in the future more treatments will be available, but for now this is all you can try I think. Oh and also look into pelvic floor theraphy. You said your anus is usually tightened which indicates that you probably have pelvic floor tension which can lead to penile pain and problems with your erections.

I agree with popopo. Veganism is an animal rights cult masquerading as a healthy natural diet. If this is so, why can you not get vitamin B12 except from animal products? So much for their „natural“ diet claim. Not saying be a carnivore, but just don’t swallow the vegan nonsense hook line and sinker. It’s not a healthy diet by any measure. You can only stay on the boredom of it with vitamin B12 injections or supplements.
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Shafted

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Re: Thinking I might have Peyronies Disease. What to do next?
« Reply #6 on: March 18, 2020, 07:51:16 PM »

Catching this early is essential!  I was diagnosed 7 months ago, switched to a ketogenic diet, and do traction every day.  I just finished my first round of Xiaflex and between all these things I’ve had some improvement.  I’m confident the ketogenic diet has tremendously slowed the development of this disease and I feel much better in general (no aching, fatigue, inflammation, Brian fog, etc).  Many believe this is a metabolic disease related to insulin resistance which causes your mitochondria to mutate and develop plaques. 

There are 2 fuel sources your body can use to function.  The first is glucose, this is not good if you are insulin resistant because it will cause your pancreas to kick in and produce insulin to normalize your blood sugar.  The second fuel source is fat, a significantly more efficient fuel source which will not spike your blood sugar and insulin.... there are some other major benefits such as ketones, but I won’t go there.  Now you might ask “I’m eating a lot of veggies, isn’t this healthy?”  Your body has a natural process called gluconeogenesis which convert carbohydrates to glucose.  As a result, too many carbs (veggies, grains, etc) is not good!

Lastly, this disease can take a toll..  Stay positive, many have beat this disease and you can too!
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TonySa

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Re: Thinking I might have Peyronies Disease. What to do next?
« Reply #7 on: March 18, 2020, 09:17:39 PM »

Guys, Veganism may not be you’re thing but it can absolutely be a healthy lifestyle.  One doesn’t have to alleviate all carbs for a diet that’s healthy for the penis.  For example, one could go vegan w 12-16 hours of intermittent fasting, or eat one day and fast the next...so many options...
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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.

helpme128

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Re: Thinking I might have Peyronies Disease. What to do next?
« Reply #8 on: March 18, 2020, 09:36:40 PM »

How do i get a damn Ultrasound
I have had 4 urologist appointments so far And im unsure if i have peyronie or not
I have massive pains when flaccid wich sometimes dont occur for week and then out of nowhere i get it again its hurting like hell
Im getting sick of this crap im only 19 years old
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19 years old unsure of peyronies or congenital curve
Asking for ultrasound 23 june 2020

TonySa

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Re: Thinking I might have Peyronies Disease. What to do next?
« Reply #9 on: March 18, 2020, 09:44:21 PM »

Help me, get started by reading the survival guide and bring any questions here.  https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057
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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.

TonySa

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Re: Thinking I might have Peyronies Disease. What to do next?
« Reply #10 on: March 25, 2020, 11:32:44 PM »

Veganism, scientific evidence of health benefits: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3662288/
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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.

LWillisjr

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Re: Thinking I might have Peyronies Disease. What to do next?
« Reply #11 on: April 14, 2020, 09:40:14 AM »

As an introductory topic, this is now locked. Feel free to post in the appropriate areas of the forum.
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Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
65y/o  13 years Peyronies free
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