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Author Topic: My Peyronies Story  (Read 192 times)

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tencents

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My Peyronies Story
« on: October 12, 2021, 01:14:42 PM »

Age - 52

Age at onset of Peyronies Disease  or I have had Peyronies Disease for 2 Years starting at the age of 50

Very First Symptoms - Slighly bent penis after a routine day sex with my wife in March of 2019

My Peyronies Disease progression, Treatments (in order), Doctors, Psychological Stages, observable changes - Small bend progressively became worse. I had pain in the initial few months. I was too shy, embarrassed to see an Urologist because I became clinically depressed and became alcoholic. I finally Saw urologist because I couldn't explain why became alcoholic in first place to my wife. She is not bother by my anatomy because she  is not much interested in sex anyways. Actually this condition helped her to keep me from asking her for sex. Ever since I developed peyronies, I just gave her masturbation to satisfy her but she could care less if I am happy or not. When I finally saw the doc in march 2020 he confirmed that I have peyronies and started me one course for Xiaflex. It did not help anyways and I developed hematoma, which doomed my xialfex trial. Finally I saw Docs from University of Michigan, who said they would not have recommended Xialfex as soon as they saw my penis. They described my condition as peyronies with complex curvature pattern at 45 degrees or more and with a stricture where the curvature started. The only option I have is incision and grafting.  If the surgery is not successful or If develop Erectile Dysfunction post surgery only option I will be left with is penile Implant

Where I am today, future plans - Right now my surgery is scheduled on 10/19 at the University of Michigan. It will be performed by Dr Maleab and Dr Yi. Both are trained in peyronies disease treatment. Dr Maleab has done extensive number of surgeries involving various treatment options for peyronies. Dr Yi is trained by renowned urologist at UT Southwestern medical center, the same school where I got trained in Pathology. I did have second thoughts about the surgery last week, however, it quickly vanished after my unsuccessful attempt of sex with my wife, I could barely penetrate her. That actually put a final nail and convinced that I should go for surgery. I am hoping to survive this journey but I am not that optimistic at all and quiet honestly I am petrified about the outcome of the surgery.
Thank for reading and giving me an opportunity share my story in this forum.
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Age: 52 Peyronies onset: March/April 2019
Status: 45 Degree compound curvature, meaning its both sideways and upwards. Pain for couple months
Xiaflex one round with no effect. Had hematoma after last xiafelx shot
Surgery inc and Graft on 10/19

Mikel7

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Re: My Peyronies Story
« Reply #1 on: October 12, 2021, 02:11:52 PM »

Welcome tencents to the forum.  The first thing I would recommend is for you to please fill out your signature line --> It's hard to remember your case details out of 20,000 members. You can find instructions
 here! - https://www.peyroniesforum.net/index.php/topic,10819.0.html

Secondly if you haven't done it is to download and read the survival guide.  It can give you some more information regarding peyronies and it's possible treatments. -->https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057

I am sorry to hear about what you have gone through. I know that alcohol can temporarily numb our emotions but when sober they seem to return. It sounds like you could actually be close to Dr Levine at Rush Medical in Chicago. He is a peyronies specialist and very good at giving a correct diagnoses. If you haven't thought about it I would suggest another opinion from him before you venture into surgery.  I would not rush into anything unless you feel a peace about doing this. It would make things easier on you if your wife would be involved in this too.  You got to do what you need to do .  My best  :)  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.

Kobegianna

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Re: My Peyronies Story
« Reply #2 on: October 12, 2021, 02:37:32 PM »

You could barely penetrate because of the curvature? Or because you were not erect enough? If you are having erectile dysfunction already why go for grafting? Why not just the implant? Isn’t the likely hood of developing erectile dysfunction after grafting pretty high?
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

tencents

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Re: My Peyronies Story
« Reply #3 on: October 12, 2021, 05:45:10 PM »

You could barely penetrate because of the curvature? Or because you were not erect enough? If you are having erectile dysfunction already why go for grafting? Why not just the implant? Isn’t the likely hood of developing erectile dysfunction after grafting pretty high?

I get good erections, without the curvature it should be fine. With the curvature what happens is that penis is not rigid enough post the curvature. Yes likelihood of developing Erectile Dysfunction is higher than 25% in incision and grafting, it might even be more. But given my circumstances I do not much have much options. Thanks for reading my post and your thoughts.
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Age: 52 Peyronies onset: March/April 2019
Status: 45 Degree compound curvature, meaning its both sideways and upwards. Pain for couple months
Xiaflex one round with no effect. Had hematoma after last xiafelx shot
Surgery inc and Graft on 10/19

tencents

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Re: My Peyronies Story
« Reply #4 on: October 13, 2021, 08:27:05 AM »

Welcome tencents to the forum.  The first thing I would recommend is for you to please fill out your signature line --> It's hard to remember your case details out of 20,000 members. You can find instructions
 here! - https://www.peyroniesforum.net/index.php/topic,10819.0.html

Secondly if you haven't done it is to download and read the survival guide.  It can give you some more information regarding peyronies and it's possible treatments. -->https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057

I am sorry to hear about what you have gone through. I know that alcohol can temporarily numb our emotions but when sober they seem to return. It sounds like you could actually be close to Dr Levine at Rush Medical in Chicago. He is a peyronies specialist and very good at giving a correct diagnoses. If you haven't thought about it I would suggest another opinion from him before you venture into surgery.  I would not rush into anything unless you feel a peace about doing this. It would make things easier on you if your wife would be involved in this too.  You got to do what you need to do .  My best  :)  Mikel7
Hi Mikel7,
I am currently off drinking. current physician is the fourth peyronies specialist in the area. I am in detroit. My insurance will not cover out of state visitation. There is no doubt about diagnoses but treatment plan is what is the major confusion. Thanks for reading my post and your advice to read the available materials. I will update on the forum about surgery and out comes as it progresses.
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Age: 52 Peyronies onset: March/April 2019
Status: 45 Degree compound curvature, meaning its both sideways and upwards. Pain for couple months
Xiaflex one round with no effect. Had hematoma after last xiafelx shot
Surgery inc and Graft on 10/19

Addo1971

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Re: My Peyronies Story
« Reply #5 on: October 15, 2021, 04:26:58 AM »

Sorry to hear your story.

I wouldn't rush into surgery - my Urologist also recommended Penile plication surgery (incision) but after reading up about it, I didn't want a shorter penis (who does right?) and also the thought of erectile dysfunction was not good (I did suffer from Erectile Dysfunction before the onset of Peyronie's but that seems to have cleared up a little now.

I opted for shock wave therapy (costly but better than surgery in my opinion) and I also use traction (Penimaster Pro) and have just ordered a SOMAcorrect VED device.

I am still on the waiting list for NHS surgery but that really is a last resort.

Hope you get sorted soon. I think most Uro's would try other things rather than go straight for surgery - I don't have much faith in a doctor who wouldn't consider other options.

My Uro in London who performs the shock wave therapy is very open to other (non invasive) treatments - he actually gave me the Penimaster Pro and recommended I use it for 3-6 months.
It seems to be helping a little but it's still early days and I 'm hoping the VED will help also.

I do have a very understanding wife which helps A LOT.
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Age - 50
Peyronies since April 2020
Diagnosed professionally: November 2020
Approx 25 degree bend to the left
Shock-wave therapy started Sept 2021 until Nov 2021
Also using Penimaster Pro rod extender and SOMAcorrect VED
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