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Author Topic: Thought it was time to say hi ...  (Read 173 times)

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Adrian1234

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Thought it was time to say hi ...
« on: November 21, 2020, 05:44:49 PM »

Thanks guys … I’ve found this forum so helpful. I thought it was about time I posted something.

I think it was July 2020 when I noticed a “hing” appear towards the base of my penis when it was erect. Now I have a 60-70 degree upward bend where the hing was during erections. There was more pain when erect and now it’s much less but the pain was never enough to be an issue for me. A lump can be felt when placid at the place where my penis bends when it’s erect. It was rice sized but now larger than a pea. My penis seems to spend more time in “hard flaccid” mode than it used to.
I live in the UK, I’m 56 and am waiting for an appointment date with a London urologist. Last couple of days I’ve gone a bit crazy ordering stuff!

Nothing has arrived yet but I’ve ordered:

1 x Penimaster Complete Set for PTT

Then for oral treatments:
Carnitine in the form of Acetyl-L-carnitine:1 g twice daily
L-citrulline: 750Mg twice daily
Coenzyme Q10 (CoQ10): Ubiquinol 100 or 200 mg per day (need to decide ... it’s the expense that makes me uncertain of dose)

I’m now wondering whether to order the VED, the Soma Correct?
It’s all starting to add up financially though.
Also as my curve seems a little on the large size I’m wondering if any of this will even help? I’m also uncertain if I would be still in the acute stage and whether this should influence my thinking regarding treatment at the moment.
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dob: 1964, Peyronies Disease 7/2020 Upward curve 70 degrees+ lump
Tx started 11/2020
Acetyl-L-carnitine 1g bd L-citrulline: 750mg bd Ubiquinol 100mg od Tadalafil 2.5 mg od Multivit VED + PTT
Exercise+ meditation+ connecting with folk Fresh fruit + veg Sleep routine

jan.schaller1958

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Re: Thought it was time to say hi ...
« Reply #1 on: November 21, 2020, 06:07:04 PM »

Well, welcome. Did you already get a Peyroines diagnosis?
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Adrian1234

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Re: Thought it was time to say hi ...
« Reply #2 on: November 21, 2020, 07:34:12 PM »

My GP referred me to a Uroligist and I'm waiting to hear when that appointment will be. I guess it will be the Uroligist who will be able to give me a formal diagnosis. I have read a lot recently about Peyronies Disease and my symptoms seem to fit. I also have issues with Dupuytren’s Contracture and Ledderhose disease (lumps on hands and soles of feet) which are known possible comorbidities.
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dob: 1964, Peyronies Disease 7/2020 Upward curve 70 degrees+ lump
Tx started 11/2020
Acetyl-L-carnitine 1g bd L-citrulline: 750mg bd Ubiquinol 100mg od Tadalafil 2.5 mg od Multivit VED + PTT
Exercise+ meditation+ connecting with folk Fresh fruit + veg Sleep routine

NeoV

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Re: Thought it was time to say hi ...
« Reply #3 on: November 21, 2020, 09:26:06 PM »

Welcome Adrian!

It's always important to see a specialist who can give you a proper diagnosis, but it sounds like a classic case given your symptoms and other fibrotic issues.
You're very wise to get started on every preventative measure until you can see a specialist. Looks like you're doing the right thing as of now.

I do recommend a VED, it can fill out dents and many forum members have had great results. Old Man in particular rid himself of six difference cases of indentations throughout his life using the VED. The research on VED is very encouraging as well, even though it isn't as widely as researched as traction.

Personally, I find traction much more powerful than VED, and I don't think VED is an essential. But that may be my own bias due to not being able to use it as much due to an old injury. Either way, the research on traction alone is phenomenal. As you likely know, the PMP gave men up to a 50% reduction in curvature in only three months in the study co-authored by Levine. You absolutely should get results if you are diligent. Do not give up!

TonySa

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Re: Thought it was time to say hi ...
« Reply #4 on: November 21, 2020, 09:49:14 PM »

Hi Adrian, sounds like a great treatment plan.  I’d also consider low dose nightly generic cialis to help remodel the plaque to healthy tissue.  If you haven’t, I’d read the survival guide before seeing the specialist if you can:  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.

Adrian1234

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Re: Thought it was time to say hi ...
« Reply #5 on: November 21, 2020, 11:57:50 PM »

Thank you both for the helpful advice ... much appreciated
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dob: 1964, Peyronies Disease 7/2020 Upward curve 70 degrees+ lump
Tx started 11/2020
Acetyl-L-carnitine 1g bd L-citrulline: 750mg bd Ubiquinol 100mg od Tadalafil 2.5 mg od Multivit VED + PTT
Exercise+ meditation+ connecting with folk Fresh fruit + veg Sleep routine

jan.schaller1958

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Re: Thought it was time to say hi ...
« Reply #6 on: November 22, 2020, 12:48:31 AM »

I will say Adrian1234 you sure are a nice individual. (The world needs more people like you.)

You are exactly the same age, 56, I was when I got this wretched disease. And you’ve got those two classic diseases which so frequently appear with Peyroines-  Dupuytren’s contracture, and Ledderhosen disease. I woke up one morning with the usual „morning wood“ as they say back when I was 56 and noticed my penis bending a bit to the right. I knew something was off, because I was straight as an arrow before. I thought I had slept on it wrong, but I always doubted that idea. So, I waited a week and saw the GP (Hausarzt) and she diagnosed Peyroines. Then someone said to see a urologist, so I did. Same exam (just palpation, no ultrasound) and same Peyroines diagnosis. Then I was given Pentox and generic viagra. I guess I took it every day. Then several months later I flew out to San Francisco to visit my sister and arranged to see Dr Lue, because I knew he was a world renowned specialist. He did a good exam with ultrasound and everything. By that time I had hourglassing. He offered a surgery, but I wasn’t too keen on that (I wish I had done it now). Then 5 years later I returned to Dr Lue and since the hourglassing had resolved, he said he could now do Xiaflex but surgery was out because of my age now due to the high risk (40%) of Erectile Dysfunction. So, that’s the next move, do Xiaflex injections.

Fortunately I never had more of a bend (upwards) that maybe 30 degrees. There’s some ideal range for Xiaflex where if exceed that degree, the Xiaflex is less effective. Not sure what that is.

I did read in a study that Peyroines is usually not as bad and responds better to treatment in men in the 55-60+ range as opposed to when it shows up earlier. Not sure if that’s so, but I’m fairly sure I read that in some study somewhere.
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Paolo

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Re: Thought it was time to say hi ...
« Reply #7 on: November 22, 2020, 03:44:23 AM »

Hi Adrian, you should be able to get the Soma VED on the NHS without cost, ask you GP.
Look up member 'Monty' by searching under members, he has had good results with VED use.

Avoid anything that gives you pain until your Peyronie's has stabilised  :)
Paul.
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Whenever you find yourself on the side of the majority, it is time to pause and reflect.

Adrian1234

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Re: Thought it was time to say hi ...
« Reply #8 on: November 22, 2020, 04:18:14 PM »

Hey ... Thanks Paul. That's really good to know. I'll check it out
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dob: 1964, Peyronies Disease 7/2020 Upward curve 70 degrees+ lump
Tx started 11/2020
Acetyl-L-carnitine 1g bd L-citrulline: 750mg bd Ubiquinol 100mg od Tadalafil 2.5 mg od Multivit VED + PTT
Exercise+ meditation+ connecting with folk Fresh fruit + veg Sleep routine

Adrian1234

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Re: Thought it was time to say hi ...
« Reply #9 on: November 23, 2020, 12:58:46 PM »

Hi Jan,
Thanks for the compliment and sharing your story. I hope the Xiaflex works out for you. It would be interesting to hear how it goes. Unfortunately it seems that the pharmaceutical company that was importing Xiaflex to the UK has stopped and so it is no longer an option here!
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dob: 1964, Peyronies Disease 7/2020 Upward curve 70 degrees+ lump
Tx started 11/2020
Acetyl-L-carnitine 1g bd L-citrulline: 750mg bd Ubiquinol 100mg od Tadalafil 2.5 mg od Multivit VED + PTT
Exercise+ meditation+ connecting with folk Fresh fruit + veg Sleep routine

Adrian1234

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Re: Thought it was time to say hi ...
« Reply #10 on: November 23, 2020, 01:31:13 PM »

Update:
1st three meds arrived today and I started taking them this morning. I've just ordered 84 tabs of Tadalafil (Cialis) 2.5 mg for once daily use (rather than 5mg od as no Erectile Dysfunction issues) and the Soma correct. No word from the Urology department. Their info said they should get back to me by next Monday at the latest. Their website says they have a 31 week wait for appointments. I just hope I can find the discipline to stick to my treatment plan! I'm not expecting miracles, but after hiding my head in the sand for about 4 months it feels good to be doing something about it. Especially now when perhaps there is still not too much calcification. I've spent a lot hours researching Peyronies Disease on the internet in the last week. This site has definitely been the one I keep  coming back to. Thanks to everyone who uses it to reach out for support, tell their stories and give helpful advise. Heart felt good wishes to you all
Logged
dob: 1964, Peyronies Disease 7/2020 Upward curve 70 degrees+ lump
Tx started 11/2020
Acetyl-L-carnitine 1g bd L-citrulline: 750mg bd Ubiquinol 100mg od Tadalafil 2.5 mg od Multivit VED + PTT
Exercise+ meditation+ connecting with folk Fresh fruit + veg Sleep routine
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