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Author Topic: 38yo HF & diagnosed Peyronies  (Read 288 times)

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Eric_C

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38yo HF & diagnosed Peyronies
« on: September 30, 2019, 01:57:02 PM »

Hi there,

I was diagnosed with Peyronie's earlier this year by two urologists. One who classes himself as a specialist surgeon, and another who claims nothing of the sort, and is a General Urologist.

I would describe my symptoms as periods of soreness and inflammation (somewhat improved now), way smaller flaccid at times, heavy hour-glassing, severe unilateral indentation; causing a leftward lean and some angulation of the head. Sometimes I only feel like I had half an orgasm. One urologist speculated that I could have a cystoscopy to investigate for a urethral blockage. But when I found out what this involved I was not keen at all.

Since then I feel like I have occasionally had a full orgasm and even one or two forceful ejaculations (just like the good old days lol). I do not masturbate much at all maybe once or twice a week. I have had HF/Hard Flaccid symptoms for a long time now due to hip/back/abdomen muscular imbalance which has improved somewhat. I am thinking about restarting pelvic physiotherapy to improve hard flaccid symptoms to see just how much of them are PC muscle derived. I do have a tendency towards musculoskeletal dysfunctionso I think it will be worth a try.

The urologist that described himself as a specialist urged me to just "wait and see" saying that surgery is the only real way to correct this.

Seeing this guy first was hugely deflating (and expensive), and since I am struggling with other things that vastly limit my life experience this new blow to my future hit me super-hard. Life started looking extremely bleak, but I've battled through it. And I am mostly optimistic now, but have my moments.

I then saw a second urologist in early August. He again confirmed Peyronie's but was more optimistic, and said I had a mild case and to try Vitamin E supplements and begin using a specific Vacuum Erection Device (SOMA Correct). I've been using the vitamin E and also added Gingko Bilboa liquid. But I take all this subject to stomach acidity levels. If I feel discomfort, I dont take it.

I'm worreid about beginning the usage of the VED. I've heard that it is very useful for people who have hourglassing or indentation which are my primary symptoms. But I'm worried about this "forcing of an erection" and what effect this might have on the tissues.

Fortunately my erections are relatively normal for the moment (although I've not had sex yet with Peyronies Disease). So I wouldn't want to do anything that might affect or risk that. Better to have a smaller mishappen but functional erection than have no erection at all.

I've heard about Pentox and some other medicines but the urologist advised against them and said go for the one with least overall negative impact to the rest of your body. I had asked about Potaba, Pentox, Acetyl-L-Arginine etc..

He said to just go with Vitamin E. So that's what I did. I would say it's been relatively stable in appearance for most of the year but now I feel like it might be starting to tilt again. Worrying.

I did have an ultrasound in June but that was a waste of time the guy couldn't find a thing and told me not to worry. The urologist had expected that might occur though and warned to not think I'm in the clear.

So I've been exposed to two different urologists, one who was relatively optimistic and prescribed active things for me to do. One who just said wait and see and I might need surgery and to go get counselling and work on my pelvic relaxation.

I'm thinking about seeing a third, but have joined here in the hope of just building up my own knowledge base and perhaps learn from others.

Thanks for reading, looking forward to chatting with you all :-)
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Developed Hard-Flaccid in summer 2014
Noticed deformed erection April '19
Suspected Peyronie's May '19
Urologist concurred suspected Peyronie's June '19
Ultrasound Scan normal
Urologist offered urethral camera investigation

Omar

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Re: 38yo HF & diagnosed Peyronies
« Reply #1 on: September 30, 2019, 02:59:19 PM »

Welcome. Do you have erectile dysfunction as well? Was your Doppler ultrasound done with an injection to stimulate an erection and then check inflow and outflow of blood?
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TonySa

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Re: 38yo HF & diagnosed Peyronies
« Reply #2 on: October 01, 2019, 04:37:01 AM »

Be sure to get started by reading the survival guide here: https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057
VED should help and not hurt (as should traction) just back off if any discomfort.  Read the protocols here.  Find a doc who will prescribe pentox and low dose nightly pde5i to remodel the plaque.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte

Eric_C

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Re: 38yo HF & diagnosed Peyronies
« Reply #3 on: October 02, 2019, 08:33:48 AM »

Welcome. Do you have erectile dysfunction as well? Was your Doppler ultrasound done with an injection to stimulate an erection and then check inflow and outflow of blood?


Thanks. No I don't, for the moment my erection function seems ok. I had the ultrasound whilst flaccid only, and he said ingoing and outgoing flow was fine.

Be sure to get started by reading the survival guide here: https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057
VED should help and not hurt (as should traction) just back off if any discomfort.  Read the protocols here.  Find a doc who will prescribe pentox and low dose nightly pde5i to remodel the plaque.

Hi TonySa. Thanks for the information. I did talk about Pentox to my urologist but he wasn't keen on it. I know zero about "pde5i", never heard of it. So the Pentox and the pde5i are taken for the same reason, remodel plaque?

Thanks. I think I'm going to order a VED then and give it a very light go. I noticed yesterday just how much overall size I've lost, it's quite dispiriting to realise that.
Logged
Developed Hard-Flaccid in summer 2014
Noticed deformed erection April '19
Suspected Peyronie's May '19
Urologist concurred suspected Peyronie's June '19
Ultrasound Scan normal
Urologist offered urethral camera investigation

TonySa

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Re: 38yo HF & diagnosed Peyronies
« Reply #4 on: October 07, 2019, 10:24:04 PM »

PDE5i are Erectile Dysfunction drugs like cialis or viagra.  But instead of taking normal dose before sex you take a small dose at bedtime to encourage nighttime erections and to remodel the plaque.  Cialis 2.5-5mg or viagra 50mg.  Generic viagra is cheap in US NOW-check out goodrx.com and generic cialis can be bought online as a liquid peptide.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3rte
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