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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

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Author Topic: My journey so far  (Read 774 times)

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Winter

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My journey so far
« on: March 20, 2021, 12:53:22 PM »

Hi everyone. I will try to summarize my entire experience so far. I have been lurking around this forum for the past 6 months or so. It was about time to introduce myself.
First and foremost, I'd like to thank you guys all for the forum. It has been really helpful, specially on the darkest days. If wasn't for for you guys, I would be taking only vitamin E and quietly waiting for the worst. I also thank Birgir's website. It was very informative in the beginning.

Background
39 yo happily married guy, 5ft10 and 180bs. Used to run and exercise with heavy weights quite a lot but never worried about diet before. I think I have good genetics to not get fat. Never got sick before. The worst thing that happened to me during my whole life was a bad reaction to the swine flu vaccine. It lowered my immune system and made me have some serious stomach problem for almost an entire month.
But  lately, during this pandemics scenario, I have been completely sedentary. Almost all day long seated in front of a computer. I was also under much stress due other personal and financial problems this past year.

Family history
Family is from Portugal and UK. Father has dupuytren but not peyronies. His aunt also had dypuytren. Several other family members have high cholesterol, blood pressure, triglycerides and arthritis. Don't know if it has anything to do.

Peyronie history

First onset on july 2020. Started feeling some weird indentations on the ventral and dorsal part while masturbating, but it didn't affect my life very much. Then, a few weeks later, I started to feel a stingy pain while becoming erect. (6-7/10) Then, to my horror, one day, I started to notice some new indentation and hourglassing on the mid section. On the following months, several other smaller dents started to appear on both sides. The pain lasted a couple of months but went away eventually, but the dents and hourglass are still there until today. My peyronies was pretty much stable for some months until late february when I had a new flare up during two weeks that gave me some new indentations and internal lumps, along with some mild pain (2/10). Thankfully, now it appears to be stable again. The lumps do still hurt when I bump (even lightly) my penis against some hard surface, like the bathroom sink. I have a congenital upward curvature of about 20 degrees that never bothered me. It hasn't changed because of peyronies. No bend to the sides. When fully erect, most of the indentations show up just a little .

Urologists
I have visited 4 of them so far. The first one was a grampy older guy with the classic sentence "take vitamin E and wait in sorrow". The second was a youngster eager to help but kinda of unavailable. Gave me Colchicine which I took it for 3 months. Can't say if helped. The third guy was a very friendly older guy that allowed me to take Pentox and low dose Cialis, but only because I asked for. The forth guy was a friendly older guy that pretty much acted like the first one.
I also had two ultrasound tests. On the first one the doctor was so unprepared and worried about some penile tumor that, after not finding it, dismissed me as if I had nothing. The second one, much more competent, easily found 5 little lumps inside my penis on different places. It was official.

The fact that exists so few doctors like Dr. Levine, recommending all those treatments but also, at the same time, so many more other so called "specialists", that are still on the "vitamin E + wait-and-see" routine, guys that are full of themselves and still delaying actions and denying all other measures, is terrifying! 

Psychological side

I already toured for all the corners of the mind. From denial to depression. For several months I avoided touch or even look at my penis, as if it was some sort of "traitor body part".
I remember waking up, a few times, in the middle of the night, sweating profusely, wondering if that would be the dreadful day I was going to live with a useless, deformed penis. I still have some bad dreams about it eventually. I also faced some psychological erectile dysfunction, until the third doctor tells me that it was just something from my mind. He really gave me confidence and convinced me that I was still capable, and for that I will be always thankful. He suggested that if I had an opportunity to have sex with a new woman (something that he and I disapproved), that I would get hard again because of some sort of primal instinct. In some way he was kinda of prophetic!!! That very same night I had some weird dream about having sex with a different woman, that made me woke up as hard as a rock. Not that I would actually do anything like this since I really love and care about my wife, but I can't deny the relief after having that dream.

Treatments

I have been lurking this site almost daily for several months. I have tried almost anything you guys have suggested.
Right now I am using Pentox 400mg x3/day, daily 2.5mg Cialis, L-Arginine, L-carnitine, Q10, Propolis, astaxanthin, Curcumin and Vitamin E. I am also taking some homeopathic medicine.
I will never take vitamin D and C again. I was taking huge doses of both at the time my first onset happened. I can't solely blame them, but I can't deny I'm not suspicious about  them. 
Vitamin D has a study correlating high levels with Peyronies. One of the urologist I visited saw some logic on it. I won't risk it.
https://pubmed.ncbi.nlm.nih.gov/31482615/
Vitamin C is seen as a risk factor for dupuytren disease. Since they are sister diseases, I won't risk it also
https://dupuytrens-society.org.uk/information/risk-factors/

Alternative actions
I am also following NeoV videos closely. (Many thanks man!) Have been trying some intermittent fasting, lowering sugar, carbs and sweetener consumption. It has helped my life in several aspects, specially because my triglycerides and sugar were somewhat high. It might not heal me, but it will surely help my overall health of body and mind.
I decided to go full NOFAP and to stop watching porn for good. Perhaps all this problem started with constant death grip. Besides, masturbation used to deprives me from sex drive, making me a worse partner I could be. I am feeling much better now without all this things. Very happy for making this decision. I am taking some slightly longer hot baths as well. Hot water makes the lumps feel a little softer and less sore.
I am also going more often to the church. Once a lazy catholic, this new habit is bringing lots of joy and hope for my mind and soul in general. I hope my feeble faith can grow up and cure me. It is really important to take care about your peace of mind. Fear, anguish and distress only destroy your sanity. I can't say it is easy, but I am trying to cheer me with positivity at least once daily. It is my spiritual medicine.

Current situation

After reading all the stories about those husbands becoming bitter toward their wives and risking their marriage because of the disease, I decided to open up with my wife about my situation despite having hiding it for several months. She was an angel. Listened to me with attention and gave me all the support I could ask for. I regret not having told her before. Another point to the forum! I am very glad I am married. If I was single I don't know what I would be doing. I think I would even seriously consider priesthood. No joking!
But right now I just hope I can still have a family with two kids if God allows me. 
Besides, I am improving my health with intermittent fasting, lowering carbs and processed food, looking for an overall better diet. Already dropped 10lbs. Starting to exercise again.

I am also trying Hirudoid for 3 days, with great results so far. Fingers crossed.

I pray for all you guys to have the best solution possible. Thank you for your support. 
Logged
41 yo, married. Onset on 07/20. Flare up on 07/21
Deep indentation on the dorsal area while erect. It still hurts sometimes; No erectile dysfunction. 20° up congenital. Taking pentox, Cialis, supplements, keto diet, VED and manual traction
God bless

Tortão Pra Direita

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Re: My journey so far
« Reply #1 on: March 20, 2021, 05:52:56 PM »

E aí mano, blz?

I think you're on the right path trying to find solutions for yourself. The majority of men just let their health problems in the hands of the first doctor they see and things can get ugly. Unfortunately, we have really bad doctors. But we can find good ones.

Have you seen Dr. Marco Tulio's youtube channel? He has a lot of good information available in Portuguese.

I'd recommend you start doing VED. Start slow, and never overpump.
Logged
1993 born. Brazil.
Peyronies since Sep 2019.
Penis developed curvature, lots of plaque, loss of size and axial rigidity. Severe peyronie.
Mar/21 TEP + Titan Touch 20 cm + 1.5 RTE.

Surgery done by Dr. Marco Tulio Cavalcanti, in São Paulo.

Mikel7

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Re: My journey so far
« Reply #2 on: March 21, 2021, 07:57:48 AM »

E aí mano, blz?

I think you're on the right path trying to find solutions for yourself. The majority of men just let their health problems in the hands of the first doctor they see and things can get ugly. Unfortunately, we have really bad doctors. But we can find good ones.

So True! Taking better care of yourself will help you in the long run. There are a LOT of bad doctors , but there are some good doctors. I use to be afraid to "try" out a new physician but realized that they are treating me based on what they know, believe and current therapies. They are not GOD although many believe they are. Never stop looking for that right Dr that will listen to you. When I go into a Dr's appointment now I always take a legal notepad with all of my questions written down. If the Dr doesn't want to take the time to address them - then good-bye Dr dumbdumb!
Logged
Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

Tortão Pra Direita

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Re: My journey so far
« Reply #3 on: March 21, 2021, 09:40:05 AM »

Please, read the survival guide to make sure you don't lose any essential information

https://www.peyroniesforum.net/index.php/topic,3180.0.html
Logged
1993 born. Brazil.
Peyronies since Sep 2019.
Penis developed curvature, lots of plaque, loss of size and axial rigidity. Severe peyronie.
Mar/21 TEP + Titan Touch 20 cm + 1.5 RTE.

Surgery done by Dr. Marco Tulio Cavalcanti, in São Paulo.

Winter

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Re: My journey so far
« Reply #4 on: March 21, 2021, 06:01:13 PM »

Hi everyone! Thanks for the messages. I really appreciate all the support!

Somehow one of the messages vanished from my post.
Sorry, I don't recall the name of the member, but I'd like to thank the long message. Specially on the part he shared about his spontaneous recover. Those testimonies gives me lots of hope. 

To Tortão, Fala irmão! Tudo certo. Vamo levando com fé, força e esperança.
I thank you for the tips and Dr. Marco Tulio's recommendation. Awesome!
I agree with you that many men do not look often for second opinions when they should. Fortunately this blog serves as a beacon of knowledge for all of us. Thanks for the links of the survival guide. It is the definitive guide to the fundamentals.
Kudos for Hawk for writing it.

About VED, I must confess I was always worried about hurting myself even more by doing it wrong. I do believe that I caused this whole peyronies problem to myself by masturbating a little too rough overtime... on the other hand I've read several great testimonies about how VED helped people with the indentations and hourglassing. Those are exactly my problems, specially those dents. I have several of them, all over. Maybe I should read more about it and giving a try. Thanks for the suggestion.


To Mikel7
Yeah man! I totally agree with everything you've said. Specially the tip on having a notepad with the written questions. There were several times when I left the doctor's office without asking key questions, only to remind them minutes later. But, please! Do not settle on the first doctor that tells you to wait and see. Fortunately I didn't waste precious time of the beginning settling with my first urologist, the "wait-and-see" guy.
Logged
41 yo, married. Onset on 07/20. Flare up on 07/21
Deep indentation on the dorsal area while erect. It still hurts sometimes; No erectile dysfunction. 20° up congenital. Taking pentox, Cialis, supplements, keto diet, VED and manual traction
God bless
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