From Canada, diagnosed after much skepticism and bad advices

[funpanda]

Hello everyone,

I am 31 male. I have been "diagnosed" this month after many skepticism from different doctors. I have almost constant but bearable 3/10 pain. My curve starts 1/3 below the head at a 40% angle at the moment. I lost over an inch, close to two inches now... Unlike most cases, I did not have an obvious injury that I know of. I got it mid November 2020 but I haven't had sex or masturbated for half a year when the symptoms started showing. I also have pain outside of sex at the moment and it is definitely more painful after having sex. Here is my timeline:

November 2020
-Noticed that my penis started to curve a bit, feeling some pain one morning. Went to see a doctor but was tested for UTI and other infections instead. All came back negative. Basically told me it will go away by itself.

December 2020
-Went to see a different doctor, found the info on Peyronie's and asked the doctor if it is possible - he is convinced it can't be peyronie's as I have not had "rough sex" or "physical damage" to my penis. Believes it is just a bad bruise I wasn't aware of... tells me to eat Tylenol until the "swelling gets better". Refused to get me imaging.
-I had sex on new years and the pain was definitely worse post sex. I did have trouble maintain an erection as well.

January 2021
-The pain got a bit worse, it is still tolerable. The curve (upwards/left) is now at 30-35%. I lost over an inch when erect and some girth.
-Saw a different doctor who was convinced it was a penis fracture. Wanted me refer me to a physical therapist

Feb 2021
-Saw a fourth doctor who finally has some knowledge with Peyronie's. After a physical examination he could feel some scar tissues. He confirms some cases like mine have no explanation yet, possibly hereditary. He diagnosed it or at least concluded based on the other tests the previous doctors have done. He is referring me to a urologist so I could get an ultrasound but earliest appointment is in August. The doctor couldn't recommend anything. He did mention that stretching seems to work but there's a chance it could make it worse. He told me I am in the acute phase and after a year it should stop. There's a small chance it'll get better by itself too. Surgery and injections are also possible if I want to take drastic action but that'll be after my urologist appointment 6 months later...

Right now:
I am currently doing manual stretching. Rice sock. 1 min pulls, 5 reps. 3 sets throughout the day for a week now, I see no difference at the moment. I am also eating vitamin E. I asked about CoQ10 and the doctor said if my diet is good, I should be getting enough of it.

I am also starting to notice an hourglass shape forming. Trying not to lose hope though...I'm considering buying a traction device however money is tight so I am not sure if I can afford a Restorex anytime soon.

PS I have read the survival guide and other posts here. Thank you all for your contributions and feedbacks, it really helped me as most doctors seemed clueless about this matter.

[Pfract]

Hey there! I am Canadian too, in the GTA area. I don't have peyronies per se, but i did have a penile fracture in 2014 which shares a few things. I can tell you a few things about the doctors here and what you should and should not do.

Check out the survival guide, and read up on the posts on the traction section and on the medication you can take. Also give a look at the restorex traction device. Being proactive is a very good thing with peyronies.

Stay strong, and remember there are people here to help and you are not alone!

[Hawk]

Welcome to the forum FunPanda.

I see that you mentioned you already read the survival guide.  It is important that you implement as many of the immediate suggestions in the guide that you can.  Other than keeping

yourself psychologically healthy those are the main things you can do.

There is the addition of heat therapy.  Be careful because too much heat can be very harmful.  There are also additional things you can do if you have ED.

It is important that you fill out the signature line info below your post.  here are instructions to do so. https://www.peyroniesforum.net/index.php/topic,10819.0.html
If you have trouble, I will help you.

[Nolte94]

Hello Funpanda,

welcome to this forum! You've already read the survival guide, so you should be informed well at the beginning.

My personal recommendations are:

Supplements (I buy mine at "amazon")
- Acetyl-L-Carnitine (helps with pain and oxidative stress)
- L-Arginin (increases blood flow)
- Coq10 (helps with pain and is antifibrotic)

Medicamentation
- Tadalafil (decreases TGF-Beta-Factor and increases bloodflow)

Mechanical
- Penile traction with a traction device like Restorex, Phallosan Forte or PeniMasterPro (I'm using PenimasterPro)
- traction by hand (recommended by NeoV, a member of this forum)
- VED with SomaCorrect, Medintim 3 or Bathmate

Psychological
- there is no cure, BUT many studies have showed good results with the treatments, I've written down in this post
- Peyronies Disease won't kill you and there is NO higher risk of getting cancer
- DON'T read to much in this forum and
- DON'T experiment with questionable devices or supplements, which aren't fully explored (for example shock wave devices from China, Serrapeptase, Potaba...)

[funpanda]

Thank you everyone. The psychological aspect is definitely a bit of a struggle. Watching my condition worsen and the slight pain has been hard.

Quick questions regarding a few things.

I am fairly healthy. BMI at 22 and my diet is good. I don't drink, smoke or do drugs. Doctor told me that regarding L'Arginin and CoQ10 there is no point in eating any, my body should produce the necessary amount? Is there any harm in taking them anyways? If not, I don't mind ordering them from Amazon and giving them a try.

For stretching, the doctor also told me that it could make it worse and I should wait for my "imaging" 6 months later so they can see where the damage is exactly. Is it still safe for me to 1) manual stretch or 2) use a mechanical traction?

As for anyone else living in Canada, this is literally my first "illness" that I need to see a specialist or even get any imaging done... is the only way to wait for the referred urologist's appointment then for him to schedule you an imaging appointment?

[Hawk]

The doctor told me that regarding L'Arginin and CoQ10 there is no point in eating any, my body should produce the necessary amount? Is there any harm in taking them anyways? If not, I don't mind ordering them from Amazon and giving them a try.

If you, in fact, read the survival guide and your doctor refused pentox and other components of the PAV cocktail, then you should already know you are dealing with a doctor who is TOTALLY ignorant about Peyronies Disease, and it is time to find a doctor that knows more than you do.  Did you check the links in the document pointing to studies??  I don't want to go over the 100 pieces of advice in the survival guide one at a time.  You will either accept that it is the product of experienced members giving input and fine-tuning the recommendations, or you will dismiss it as internet nonsense.  I don't see the point in asking us if we recommend what we already carefully recommended.

You could, in fact, worsen the Peyronies Disease with manual stretching. Hopefully, you already have objective baseline measurements written down, and you will proceed with caution, noting improvement or worsening of symptoms.

[LuisFernandez]

Stop overthinking it. The more time you let pass without doing anything the worse it gets.

If you can't afford RestoreX get *something* you will need to do research. I personally use the totalman rod extender: https://totalmanshop.com/collections/full-kits/products/penis-extender
Or look for something cheap on Amazon, anything is better than nothing.

I personally had to ask my brother to get the RestoreX and paid him later.
Secondly get a VED device: https://www.amazon.com/gp/product/B00MV8QXLO and a hand pump: https://www.amazon.com/LeLuv-Vacuum-Ergonomic-Release-Valve/dp/B07X3N8TSW/

These are cheap and safe.

Again, don't let fear overtake you and start therapy ASAP. The only way you will make it worse is if you overdo it. You need to train up your penis a bit, so start low tension and build up from there. For VED never go over 5hg and no more than 15min at a time max 2x per day.

[funpanda]

Thank you. I have ordered a restorex and I will look into VED.

[Fubar94]

Oh yeah I defenitely get this. I had skepticism as well. They feel the plaque just won't diagnose peyronies. Probably cause zi also have a body dysmorphis disorder snd they're more focused on keeping me calm while my dck's been shrivling and painfull for years now.

[Andy_75]

Hi, I am from Canada too, Ontario.  

Unfortunately, you are in a healthcare system here that is very slow, as you noted, 6 months for a referral, so sounds like you are in the GTA area or another highly populated area.  There really is nothing you can do unfortunately, short of having a penile fracture or other 'emergency', we just have to wait in line for our referrals.  At least you have the Urologist appointment.  You could call and ask to be put on a cancellation list but most offices are not even doing that these days due to overload.

I have been searching around so if any other Canadians from Ontario know of any Doctors in the GTA area that specialize in Peyronie's or at least Urologists that suggest/offer treatment, please DM me/op and let us know some names in case we need a 2nd opinion etc.

I am set to see a general Urologist in May and I don't even know if he treats Peyronie's or if he is well versed in it. Really hoping that he can help figure out what this bump is, maybe it is not even Peyronie's (again hoping).

Cheers,

[LWillisjr]

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