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uwc888

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Scared and frustrated
« on: April 12, 2021, 01:37:47 PM »

Nice to meet you all  :-[

I'm a 49 year old Brit living in UK who has recently been diagnosed, who's frantically researching and looking for answers.  I noticed a small lump a few months ago, went to my GP who referred me to a urologist.  He confirmed Peyronies Disease but said just to leave it.  Not content with that, I've been having Shockwave Treatment but things have rapidly worsened in the last few weeks.  I'm now sporting a thumb sized dent in the right side, a 45 degree upward curve and some discomfort when erect.  TBH I'm scared and obsessing about it and am trying to figure out what to try and what's even available here.  The Shockwave therapist has given me some Tadalafil, I'm taking 1000mg of Vitamin E and I have just ordered some Pentox.  Is there anything else I should be doing?  I've just read about reducing my sugar intake, penis pumps, ALCAR and Coq10 but it's such a minefield.  Any advice would be hugely appreciated!
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Age 49
Rapid deterioration since diagnosis in Feb 2021
Indent on right side
Curvature 45 degrees upwards
1000mg Vitamin E
7 sessions of Shockwave Therapy done
Tadalafil 5mg (started 9/4/21)
1200mg Pentox
Various supplements

mikel7

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Re: Scared and frustrated
« Reply #1 on: April 12, 2021, 02:42:07 PM »

Welcome uwc888. You have found a great forum with a lot of good information. It appears that you did fill out your profile and signature line  - great!  You need to read the survival guide if you haven't  already --> https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057.  It does have a lot of information to digest at this time. There are a lot of emotions you are dealing with now and be reassured we have all gone through it!  The tadalafil and pentox has helped a lot of men with slowing down the progression of this disease - I would try it.   Also I would read up on traction and or VED as this also helps.       
 Remember if you take a shotgun approach to this you wont really know what is helping or not.  :) Mike
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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.

Hawk

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Re: Scared and frustrated
« Reply #2 on: April 12, 2021, 06:57:35 PM »

Welcome,

You are among friends. 

I agree with Mike that with a shotgun approach you do not know what is working.  Call me selfish but my first passion is that my regimen works.  My concern for identifying the exact component that worked is a lot lower on my list.  I will leave that to other researchers to figure out.  That is especially true since all of these non-invasive first-line treatments have few if any side effects. I think the shotgun approach hits the problem from all angles.  This gives a better chance of success with a problem that often does not respond well to non-invasive treatments.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Tobyg

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Re: Scared and frustrated
« Reply #3 on: April 12, 2021, 07:55:33 PM »

My advice is: be happy that you met this disease at age 49, if it is not a serious case you will not have problems, you can live.
Having this disease as a young person is devastating.
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30 years,injured at 25 from jelqing.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.

Hawk

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Re: Scared and frustrated
« Reply #4 on: April 12, 2021, 10:24:09 PM »

My advice is: be happy that you met this disease at age 49, if it is not a serious case you will not have problems, you can live.

If you read his post I think you would know that it is a serious case to him as it would be to anyone who experienced it.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Winter

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Re: Scared and frustrated
« Reply #5 on: April 13, 2021, 08:39:55 PM »

My advice is: be happy that you met this disease at age 49

Really Tobyg? He opens up a post called “Scared and frustrated” and you tell him to be happy because he is “old enough”? I totally understand your pain and I hate this freaking disease as much as you do, but let’s be compassionate towards our fellow brothers here, despite their age or background.

Uwc, I recommend you to read as much as you can at this point and try everything you find reasonable and affordable early on. There are several popular treatments and some interesting alternative ones. But bear in mind that there are lines of action for any case, regardless of severity. I know it is impossible to stay calm and positive at this initial stage, but do your best to remain as much optimistic as possible, since our minds can be our allies. Specially with a disease that has documented cases of spontaneous recover.

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39 yo, married Onset on 06/2020
Hourglassing when semi-erect, few indentations. Small upwards curvature
No erectile dysfunction. It still hurts sometimes;
Taking pentox, Cialis, Q10, and Hirudoid daily;
Trying keto diet with good results.
God bless

Tobyg

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Re: Asustado y frustrado
« Reply #6 on: April 14, 2021, 12:04:07 AM »

Winter:  I'm trying to find the difference between your advice and mine and I can't find it.
you tell him to be optimistic like me.
I'm trying to get him to see the bright side of this and save him from the first few years of despair.
It is very important to be aware that there are worse cases and things in life.
that is my contribution.
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30 years,injured at 25 from jelqing.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.

Winter

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Re: Scared and frustrated
« Reply #7 on: April 14, 2021, 12:19:19 AM »

That’s why I was also sympathetic to you point as well. I won’t dare deny that it is devastating to have this disease at early age.
I just don’t think it helps on dealing with the anguish of the earlier stages of the disease by suggesting it to be like a lesser issue because of age.
But that is just me. I would rather focus on offering guidance to the better treatment options. But lets not hijack his post arguing over this. We all want to provide support and help.
Wish you a great recover as well.
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39 yo, married Onset on 06/2020
Hourglassing when semi-erect, few indentations. Small upwards curvature
No erectile dysfunction. It still hurts sometimes;
Taking pentox, Cialis, Q10, and Hirudoid daily;
Trying keto diet with good results.
God bless

Mr man

  • Keeping positive. Coming to terms with new penis shape.
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Re: Scared and frustrated
« Reply #8 on: April 15, 2021, 04:24:09 AM »

Hello Uwchhh,

The best advice I can give you at this stage is. Do not panic or obsess.

Take time out from thinking about this disease. I don't know your personal situation, but try and enjoy the simple things while going through this. Family time, your significant other, general good health, good food, walks in the park, your children.

Do talk to your significant other or a friend. Most people are sympathetic. It can help to let it out. My brother knows and he's been great.

This will resolve. That can happen quickly or take some time, but it will resolve.

It's been 2 years and 6 months for me. Right now I feel I'm in the last few steps, but it only took this long for me because I decided not to have surgery.

Just hang on in there. Don't let this condition hijack your whole life. There are lots of treatment options. You'll be fine in the end.
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Age 46
30 degree dorsal bend.
Daily Traction for 11-12 hours, Is working. Hyperthermia (heat) therapy for 30 mins twice a week.
Pentox 300mg twice daily, is working. Potaba 12g sachet 4 times,
Started keto diet on 25/05/2021.
And praying to God 🙏�

TheBoykinLady

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Re: Scared and frustrated
« Reply #9 on: April 15, 2021, 09:08:46 AM »

Hi UWC888

I have not been here long enough to dispute any of the above but I can say, as the wife of a Peyronie's and Erectile Dysfunction patient, your wife will probably very much appreciate the communication. Hopefully, you will receive the needed support and have someone to help soothe your stress a little. 

If you ever need another woman's POV, just ask. You are among friends and most have a wealth of knowledge to help you.
My husband was in your exact position 8 months ago and we were finally able to stop the panic phase, with Hawk's help! Stress and obsession is absolutely not helping you, but I do get it. The initial shock and panic reaction should have its own tab here. However, the Survival Guide covers some of it.
In the times you find yourself obsessing, talk to your wife, spend time with friends, mow the grass, play golf, anything to divert your attention until you have a solid treatment plan acceptable to YOU, not your physician.

During my nursing career I found so many patients agreeing to a treatment just because a physician said it was "The best option". I want you to really think about this. Is it the best option for the patient or the physician? Only you can determine that. The only way to decide is to know the treatment protocols and side effects. There are some very bad side effects out there.  To know those, you have to research. The research may become your diversion. It has for us.

I wish you much success going forward and I am available for questions via private message or post.

What i can tell you is do your research and ask plenty of questions here about treatment options before your appointment next week. Know your options and go in with a firm grasp of what you want/expect or will tolerate.
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48yo wife of Erectile Dysfunction and Peyronie's patient with hemophilia (waveboy).
I'm looking for answers but am happy to answer any questions you may have.

mikel7

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Re: Scared and frustrated
« Reply #10 on: April 15, 2021, 10:10:24 AM »



During my nursing career I found so many patients agreeing to a treatment just because a physician said it was "The best option". I want you to really think about this. Is it the best option for the patient or the physician? Only you can determine that. The only way to decide is to know the treatment protocols and side effects. There are some very bad side effects out there.  To know those, you have to research.


Excellent advice!  How many times I could have saved $$$ because I listened to the physician rather than putting in some serious thought!
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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.

Hawk

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Re: Scared and frustrated
« Reply #11 on: April 15, 2021, 11:43:25 AM »

This introductory board is just for introductions.  Each new member gets one topic here with no more than ten replies.

As such this topic is locked.  Please continue to post under the appropriate boards below on the main forum.

Hawk
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums
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