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Author Topic: Well here goes...  (Read 226 times)

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insomniac

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Well here goes...
« on: June 08, 2021, 12:51:12 AM »

About 3 months ago, just as my partner was initiating sex with me, I realized my penis had developed an unusual bend to the left.

Oh boy. I tried to put my concern aside long enough for the activity at hand, and then afterwards with a sinking feeling that I was resisting, acknowledged the truth - that I had developed a condition I had read something about in the past.

I knew it even before I Googled Peyronie's Disease again, and made an appointment with a Urologist.

It’s significant. And obvious. And painful when I have an erection. Perhaps mine may not be the most extreme case, but it actually seems I’m developing a general curve up near the tip and a twist/bend to the left, in the same area. The twist to the left was probably about 25 degrees 3 months ago, and now it’s closer to 45 degrees.

I, like others, I have been reading about, aren’t sure exactly how it happened. I’m thinking it was actually during oral intercourse for me, but I’ve had similar or much more vigorous/strenuous activity in the past without an issue. I guess my penis just sort of gave up, haha.

I'm in my early fifties, and I've already had to go through a few male sexual health issues, but this one has certainly been the hardest one to face up to. It’s felt pretty dark. I read some optimistic posts from folks here and on Reddit who have gotten used to the condition, but I’m certainly not there yet. I guess if I ended up in a situation where I’m not in a relationship, I could just pack it in, say it’s been a good run, and move towards a future that’s mostly sexless. Maybe that’s ok, and I’m not saying that to make myself feel sorry for myself. Just sayin’. I know someday that’s likely to happen anyway, if I live long enough. Everyone slows down. Or at least, most everyone does. But I don’t like thinking about that as the proximal step of the journey.

A couple of pieces of data:

1)   I had a circumcision surgery two years ago for phimosis. After the circumcision, I started to develop some hard spots (plaque), which sent me back to the doctor twice with questions. I was reassured that these were normal, that they would go away, and they certainly seemed to dissolve after about 4-6 months. After the circumcision, I was understandably more sensitive on the head of my penis, but also less sensitive in the sense that the pressure and small motion of the foreskin previously felt pleasurable, and now that sensation was entirely missing. I was also having intermittent sort of dull pain when I had erections. I tried not to worry about it and figured it would take a long time to heal. Then COVID-19 happened. Penis discomfort and being hyper proactive about making sure things down there were ok wasn’t as much of a priority. Staying away from doctors and hospitals and everyone else seemed more critical. Mostly, I never have had as much enjoyment or pleasurable sensation post-circumcision. My final take on the whole procedure? I wish I had never done it. I certainly wonder if, even if a little bit, I weakened my penis with this surgery. Both doctors (neither of which did the circumcision), think that this didn’t cause the Peyronie’s condition, but it’s hard not to think there could be a connection here somewhere, even though these happened two years apart. I thought I would share this in case someone else has experienced a similar story. It seems like these forums are potentially beneficial, among other reasons, at potentially identifying shared patterns.

2)   I've been taking TRT (injectable) for about a year and half now. It's been helpful both for libido and overall mood, as I'm aware I'm inclined towards a baseline of what I would term mild depression and anxiety. Not sure it’s related, but again I thought I would mention it.

3)   I’ve been diagnosed with Ankylosing Spondylitis and Irritable Bowel Syndrome. Both of which are inflammatory diseases, and been aware of and tried to moderate their impact over the last 10+ years. I’m on Simponi for the AS, and pretty much just a restricted diet to try and curb the IBS.

Since it’s only been a few months since the onset of acute Peyronies Disease, I’ve seen two different urologists (the more recent to get a second, and in my mind a more experienced opinion). The first doctor prescribed Pentoxifylline, and stretches. The second doctor added Cialis to the list. So I’m doing a twice daily dose of 400mg Pentoxifylline, and 1 Cialis in the morning. Flaccid stretches are 3 times a day, and a gentle erect manipulation of the penis once a day in the opposite direction of the curve only if I’m erect.

I will post developments, as they occur. I’m told I need to try these conservative measures until things stabilize or even potentially improve, and there is no pain, before more potentially invasive measures could be taken.

It seems like this sort of thing should be easily treatable in this day and age, but the damn penis seems like a fickle piece of hardware. Ugh.
So I will carry on, try to be patient, and hope to learn, and perhaps be reassured by everyone else’s story here.

I’m concerned possible therapies are ineffectual in most cases, and the doctors’ approach speaks more to a psychological tactic of immersive exposure over time until the patient succumbs into the acceptance of the condition.

I hope not, but I don’t feel like I have a lot of hope right now. I guess action is often a substitute for hope, so here I am. I’d appreciate hearing any success stories to buoy my spirits, and will absolutely share any inkling of positivity that sprinkles on my path.

Thanks much for reading…

Yours on bended P,

Insomniac
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Age 52
first symptoms occurred March 2021
Diagnosed with acute stage Peyronie's Disease
Currently taking 2x400mg Pentoxifylline, 1x Cialis, doing stretches
Waiting for follow-up appointment
Intercourse is currently painful
In a stable relationship

insomniac

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Re: Well here goes...
« Reply #1 on: June 08, 2021, 01:00:05 AM »

I should add. The other concern (I'm getting way ahead of the game), is that even if I get better, I'll be constantly worrying about the disease recurring.  :-\
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Age 52
first symptoms occurred March 2021
Diagnosed with acute stage Peyronie's Disease
Currently taking 2x400mg Pentoxifylline, 1x Cialis, doing stretches
Waiting for follow-up appointment
Intercourse is currently painful
In a stable relationship

TDix

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Re: Well here goes...
« Reply #2 on: June 08, 2021, 01:05:42 AM »

Welcome to the forum insomniac!  I hope you find the support and the answers you are looking for.  You are among those who understand the challenges you are going through.

The first help we can give is this link to our Survival guide.  It is important you start here.  It is packed with information and you should read it more than once.  It would be good to print it. ---> https://www.peyroniesforum.net/index.php/topic,3180.0.html

That will help you to immediately start taking action.  It will also help you understand the questions you what to ask and the answers you receive.


Next, Please,

We cannot remember your case details out of 20,000 members.

If you want accurate answers that apply to your case then be considerate enough to help us.  You can save us all from typing the same 40 questions over and fill in your signature line>

https://www.peyroniesforum.net/index.php/topic,10819.0.html

Replace this text with critical info about your case
such as age
first symptoms (deformity, Erectile Dysfunction)
official diagnosis
treatments tried
relationship status
Etc
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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

insomniac

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Re: Well here goes...
« Reply #3 on: June 08, 2021, 01:10:39 AM »

Thank you TDix, I appreciate the reply. Will do...
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Age 52
first symptoms occurred March 2021
Diagnosed with acute stage Peyronie's Disease
Currently taking 2x400mg Pentoxifylline, 1x Cialis, doing stretches
Waiting for follow-up appointment
Intercourse is currently painful
In a stable relationship

TDix

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Re: Well here goes...
« Reply #4 on: June 08, 2021, 01:10:50 AM »

You have a very well written post!  Having been circumcised since birth, I can’t really relate too much but others will definitely chime in.
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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

insomniac

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Re: Well here goes...
« Reply #5 on: June 08, 2021, 01:22:17 AM »

Thank you! I'm sure I've forgotten something, but it was slightly cathartic just to write it all out, and read back through my own process so far.
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Age 52
first symptoms occurred March 2021
Diagnosed with acute stage Peyronie's Disease
Currently taking 2x400mg Pentoxifylline, 1x Cialis, doing stretches
Waiting for follow-up appointment
Intercourse is currently painful
In a stable relationship

TDix

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Re: Well here goes...
« Reply #6 on: June 08, 2021, 02:13:26 AM »

You will find all the help and support you can find short of a doctor here!  A good doctor I should say, which is the first and most important part of your journey.  Don’t “accept” a usual urologists diagnosis if it doesn’t satisfy you.  Find a doctor you trust and are comfortable with that sets a plan out to fix you.  That is very important
Logged
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

mikel7

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Re: Well here goes...
« Reply #7 on: June 08, 2021, 06:10:34 AM »

Insomianc I can relate to a lot of what you are saying.  I am circumsized and always wondered what it would feel like not to be.  I like the idea of the cleanliness issue if there is one. My penile sensitivity is excellent but remember that your free testosterone levels are what contribute to your health of your penis.  I don't think that the surgery caused your peyronies but who really knows.

I have been on full TRT therapy for the past 17 years and have tried it all.  My testicles stopped working and no Dr could figure out why.  I hope you have a knowledgeable Dr and are not doing this on your own?  I can give you tips/info on this if you need it and I can PM you to give you the name of the largest male hormone forum on the internet that has several Dr's and compounding pharmicies working ogether.

I also have had IBS and arthritis/inflammation. I have to watch my diet and use gluten free sometimes which does help. Thee only thing that has helped with the IBS is using a product called ortho-biotic. It is a unique probiotic product that works in your gut.  I also drink filtered pure aloe vers juice daily.

Finding a Dr knowledgeable in peyronies is not an easy task.   Most urologists are clueless.
You might look into using a traction device.  Either Restorex or PMP.  I don't know much about hand traction and would be cautious about doing so.  A traction device has you at your choice for traction level and can be regulated.  I use the PMP. Heat therapy may be something to look into also.  If you search the forum you can tudy up on it.  :)  Mikel7
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

insomniac

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Re: Well here goes...
« Reply #8 on: June 10, 2021, 12:03:50 AM »

Thanks Mike, I appreciate all the insights. I am looking into heat options. There seems to be some good reports around that, and it seems like if it's done correctly the risks are minimal to nonexistent.

Curious about ortho-biotic....how would you quantify or qualify the improvement of your IBS with this product?

Are you currently using a traction device as well?

Thanks!

Insomniac
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Age 52
first symptoms occurred March 2021
Diagnosed with acute stage Peyronie's Disease
Currently taking 2x400mg Pentoxifylline, 1x Cialis, doing stretches
Waiting for follow-up appointment
Intercourse is currently painful
In a stable relationship

mikel7

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Re: Well here goes...
« Reply #9 on: June 10, 2021, 05:32:50 AM »

The ortho-biotic has helped my gut situation with less gastric upsets/nausea and diarrhea. I take 1 pill a day on an empty stomach and it helps immensley with digestion.  All my bloating has stopped also.  It has also helped me with a candida problem to eliminate it. It is not cheap though.

I have been using the PMP for about 7 months now and can say that it has helped. It was tricky at first and tok about 6 weeks for me to get the hang of it. Putting on the glans chamber is the area that is learned through repetition. I now don't even feel it on. I also have the Restorex which I only use for counter bending. I can say that the glans clamp is not the most comfortable thing to wear.  I wrap my glans with guaze and then it is tollerable for about 30 minutes only.
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

LWillisjr

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Re: Well here goes...
« Reply #10 on: Today at 12:06:54 PM »

This introductory topic is reaching the limit of 10 posts as an introductory topic. So will lock it now and feel free to start new topics in other 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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