Hi I'm new. Do I have Peyronies? Any Advice would be helpful. :)

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Worrier77

Hey there,

Age?
I just turned 30.

What did your medical doctor conclude?
I've been to a Urologist who mentioned that I might be in the starting stages of Peyronie's. He insisted that we do a cystoscopy as I've also had some painful urination. He scheduled me three weeks out, but my painful urination has seemed to subsided since my visit.

He has me on the "wait and see" approach.

How long have you had symptoms?
My symptoms started late June, so roughly 8 weeks.

What are your symptoms?
- Painful Night Erections. Has become more mild in the last 2 weeks, but becomes mildly painful when returning to flaccid state.
- Painful Urination, has become infrequent last 3 weeks or so.
- Skin irritation when putting on any lotions or jelly to keep from getting dry.
- Lack of daytime or full erections, even with high libido.
- Curved erections in semi-rigid state. Seems to have gotten progressively worse.

What treatments have you tried and what were the results?
Taking Tylenol for pain
Vitamin E 200 IU 2x Daily for two weeks
Started L-Carnitine 500 MG today.
Started Co Q-10 200 MG today.

Curve seems worse today than what it was 6 or 8 weeks ago. Roughly 30 degree curvature to left when semi erect. Have not had full daytime erection in 6 weeks.

Uro has me scheduled for Cystoscopy, but will prescribe some topical cream once confirmed that I have Peyronie's.

Do you have insurance or means to get medical treatment?
Yes, fully insured.

where are you in dealing with the psychological aspects of Peyronies Disease?
- Pyschological ED due to severe anxiety of the sight of my deformity.
- Severe Insomnia due to painful night erections - Prescribed 50mg Trazodone daily.
- Depression - Prescribed 10mg Celexa daily.

Are you in a relationship?
- Have not been in a relationship in 8 months.
- Infrequent masturbation, once a week for 90 minutes, until 6 weeks ago. Sexually inactive since then.

PS - My uro says I have no plaque, just a small indent in the top left point of my shaft.

TonySa

I'd suggest you ask for pentox immediately and add low dose daily tadalafil, VED/traction-all to halt the progression and ideally reverse it.  Ask why a cytoscopy-diagnostic tool for peyronies is a Doppler/ultrasound.  If he doesn't, find a specialist in peyronies.
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.

Worrier77

Thanks for your reply TSanchez.

Does my case sound serious?  Your response has me a bit anxious.

Do you have a particular VED/Traction device that you'd recommend?


Stabler

Hello Worrier77

I strongly suggest you seek another urologist, one that specializes in Peyronies as Tsanchez suggested.. The wait and see method is not the way that you want to proceed if the is Peyronies. The description of your symptoms does suggest Peyronies as your now urologist stated and if this is the case starting treatment would be key at this time. Pentox, low dose Cialis or Viagra VED/Traction are all traditional treatments and have had good outcomes. A topical cream would not be much benefit.

I have sent a list of links for the forum through PM. there is one for a list of Urologist listed demographically, go through and find one that is closest to you and see about getting in with them.

Stabler67
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

Worrier77

Hi Stabler,

Thank you for providing these links in the message.

I will be trying to get in to see one of the recommended clinics as soon as possible next week to get additional feedback.

Would you have any recommendations for anxiety? Going through the threads has given me two panic attacks already today.

Stabler

While I can say to you to take it easy that is simply easier for me to say than for you to do....
You are early in the game if this has only been going on since June, that is a plus. Try not to think the worst this is something that there are treatments for and finding this forum is a great start because the members here are great at walking you through everything.

I cant tell you not to worry but I can tell you we are all here for you and anything you need or want to ask can be answered here to help ease your mind, and the answers here are going to be from people who live with this daily so you can feel confident that it is good advice. None of us mind getting a PM so if you want to ask something that is not on a public board you can do that as well.

Stabler67
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

TonySa

Recommended traction devices includes penimaster pro, ESL-40 and restorex.  Somaerect 3 cylinder is a recommended VED.  Def choose at least one to get started.
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.

Worrier77

@Stabler67 - Thank you for the kind words. It's nice to know that there is a forum out there that can relate to some of the problems I've been having lately. I've been dealing with other personal life issues since early June and this has been a bit overbearing for me, even though I'm trying to be as positive as possible.

@TSanchez12369 - Thank you for these recommendations, I'll go ahead and do some research on the models below to purchase.


Worrier77

Just wanted to do an update, I may use this thread as a journal of sorts. If I should create a new thread elsewhere, just let me know.

Per TSanchez's recommendation, I've purchased an ESL40 until I can get with my second Uro who is in a clinic that Stabler67 recommended.

I swapped out Co Q10 with Ubiquinol 300 mg /day (expensive, but on sale).

A couple more questions for everyone:
- Is L-Lysine or L-Arginine effective at all? Am I overdoing it with the supplements?

- Are there any dietary changes I can make without losing too much weight or does it matter? (only 160 at 6'1') I currently eat pretty healthy, organic. I do eat grains, primarily bread, with plenty of meats (mostly pork/chicken), veggies and fruits. Very little caffeine ( 1 cup of coffee each Saturday).

- Are there any specific exercise routines I can adhere to? Primarily doing cardio 3 days a week with upper/lower weights 2 days a week.

Thanks again for everyone's help.  

Paolo

Quote from: Worrier77 on August 26, 2018, 08:23:05 PM
A couple more questions for everyone:
- Is L-Lysine or L-Arginine effective at all? Am I overdoing it with the supplements?
Thanks again for everyone's help.

Hi, and welcome  :)

Do not take those Amino acids together, if supplementing Lysine take it with zinc as a combo.

Generally speaking isolated amino acid supplementation isn't a (long) term recommendation, as with most supplements they should be cycled IMO. I take Gelatin powder (has many Amino acids) and it makes me feel great about 3 times a week, the Glycine and Proline in it lowers Cortisol and Adrenalin, stress relief if you will  :)

Also do not exercise to the point of mouth breathing, I feel I have damaged myself doing this due to heavy/extreme rowing sessions  :(

Paul  
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

Worrier77

Hey Paolo,

Thanks for the suggestions. I didn't know they interacted.

I've only been taking the lysine for about 4 weeks 2000mg a day. Not a bad idea with the gelatin powder as well, I'll look into a few. Any suggestions?  :)

Ahh, the exercise I've been doing has been pretty intensive (especially on the cardio side). Maybe I'll cut back but increase the number of times I work out.


NeoV

I had to sacrifice muscle for the first half a year on keto.. Now I am getting more muscular than before, but it takes a while for your mitochondria and body to adapt. 29 or 30 is the average age of insulin resistance or pre-diabetes. Before that comes hyperinsulinemia, and before that comes sick mitochondria with no way to beta-oxidize fats. CoQ10 is definitely a good thing to take. I recommend citrulline for erections. Pine park and ginseng were very nice too. I would avoid all grains permanently. Sweet potatoes would even be better. AVOID ALL FRUITS, or be careful with them.

A fast track to insulin resistance and Peyronie's is the mentality of "I need muscle!" which causes you to stay full all the time and therefore be basically dying. Fast or mimic fasting once in a while, or go keto / carnivore / low insulin.

But yeah, you won't lose muscle on keto exactly. There was even a study that showed men on keto gained muscle I think. I'll see if I can find it.

Any indentation is Peyronie's, scar tissue is not a prerequisite.  

Paolo

Hi worrier77, below is the link to the Gelatin I use;
https://www.amazon.com/Great-Lakes-Gelatin-Hydrolysate-Unflavored/dp/B005KG7EDU/ref=sr_1_3_a_it?ie=UTF8&qid=1535439435&sr=8-3&keywords=gelatin%2Bpowder%2Bgreat%2Blakes&th=1

The problem with meat consumption (Chicken, Beef etcetera) is the excess of Tryptophan and Cysteine, both are inflammatory and inhibit activity of the thyroid, whereas Glycine consumption is now historically low, hence supplementing Gelatin corrects that balance. Alternatively you could eat organ meats, liver for example.

By the way a small tip for pre-exercise is take Sodium Bicarbonate in some water about 45-60 minutes before exercise, it enables a (longer) workout as it counteracts Lactic acid build-up.

All the best,
Paul  :)

Whenever you find yourself on the side of the majority, it is time to pause and reflect.

james1947

As introductory topic the topic is locked.
Please continue the conversation on the specific boards
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum