25 years old. Met with Dr. Levine this week.

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Benraycamp0

Summary:

  • 25 years old
  • 20 degree upward curve with slight clockwise twist
  • Symptoms presented in Dec 2020 and diagnosed with Peyronie's Disease (palpation) by local urologist in Jan 2021. He said he felt "some scar tissue".
  • Had minimal (2/10) flaccid pain at the beginning on and off that all went away in a few weeks. Never had pain on erection.
  • Treatments so far (for about 2 months): Pentox, L-arginine, Tadalafil (5mg), Acetyl-L-Carnitine, Traction for 4-6 hours per day
  • No change (progression or regression) since onset
  • Flew from Texas to see Dr. Levine yesterday who said I did not have Peyronie's Disease but probably a slow healing wound or hypertrophy. No plaques felt on palpation or detected on ultrasound (both flaccid and erect).
  • Dr. Levine said I had perfect bloodflow and trapping. Nerve/sensitivity test came out to be perfectly normal
  • Pictures of my penis (scroll down to see all three pics): https://imgur.com/a/Ht6klcF

Hey everyone. I just noticed that I joined on January 1 of this year (what a way to celebrate the New Year) and have now been dealing with this problem for about 4 months now. Ever since I noticed the new curvature, I thought for sure it was Peyronie's Disease since that is what my local urologist told me as well as this forum and other sources on the Internet. Most people believe that acquired deformity = Peyronie's Disease, but Dr. Levine seems to think differently.

To say I was shocked by Dr. Levine's assessment is a huge understatement. After months of studying every piece of research on this forum and on the web, a one hour session with Dr. Levine and his PA has completely reversed my understanding of Peyronie's Disease. Well at least they made the point that not all scar tissue in the penis is Peyronie's Disease. Dr. Levine seems to believe there are 4 types of scar tissue:

  • Normal scar tissue: Scar tissue deposited in response to trauma/microtrauma. Heals normally and no deformity present. Most men, if they sustain an injury/microtrauma, will have this response.
  • Slow healing wound: Same as above, except heals much slower. May take months or years to resolve.
  • Peyronie's Disease: Scar tissue OVERLY deposited AT AND AROUND the site of injury. DOES NOT go away.
  • Hypertrophy: Thickening of the tunica that creates inelasticity. May or may not go away over time.


The clinical summary I received from Dr. Levine on my case:
I do not believe this patient has Peyronie's disease. It may be that he had some type of injury with a slow healing wound which is now virtually resolved or he may have developed a bit of more prominent septal hypertrophy. Regardless at this point I suggested he finish what he has of the medication and consider traction for another month or more if he wishes. The goal of the traction would be potentially to gain some further length. We had extensive discussion regarding Peyronie's versus slow healing wounds versus hypertrophy hopefully he understood the difference and he did seem to appreciate the reassurance that he does not have Peyronie's disease at this time.

So he believes my case is either a slow healing wound or hypertrophy, which may improve and go away over time. He says to not take Pentox or Tadalafil, and to simply take supplements to keep peak erection quality (he mentioned VitaFlux). He said traction is really to just gain length if I wanted to, but he told me that it really isn't necessary. I mean at the end he literally sat me down and said "you don't need to worry, you have a good penis. Now go have fun and f*** girls".

I really wanted to just share this info since it seemed like everywhere I read, whether on the forum or the Internet, pointed to Peyronie's as the explanation for any acquired curvature or deformity of the erect penis. And while Dr. Levine is just a human being, I felt his diagnosis was thorough and he routinely sees ~20 Peyronie's patients a week for years now so he knows what he's talking about. There are a couple other people on here who also saw Dr. Levine and got a very similar explanation - no palpable plaques, no plaques on ultrasound, and they walk out of the office with a no Peyronie's Disease diagnosis. Part of me feels like there are sooo many members on here (especially the younger ones) who had some curvature and their local urologist immediately said its Peyronie's Disease when its probably not (I am just guessing here, but my case seemed too similar to so many others on here).

I'm sincerely at a loss for whether to feel good or not about my diagnosis. I am planning on scheduling a follow up with Dr. Levine (over the phone), since I still have many questions on my case.

Does anyone have any thoughts or advice on my case? Also, for anyone who has questions about my experience going to Dr. Levine, I am more than happy to share more information!  
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Asphyxia

Do you know if its possibly not peyronies if pain lasts for months?
Is absence of plauqe the only thing he based his conclusion on?

My understanding was that scar tissue with no palpable plaque can still be peyronies

My mri showed thickening but the urologist didnt exclude the possibility of it being peyronies
Age:23. Onset of symptoms: september 2020.
Curve mostly semi erect about 60 degrees, slight pain
Tried short & prolonged fasts, keto,carnivore, traction and most of the supplements.
Severe digestive issues, probably an autoimmune disorder

Benraycamp0

Not sure about pain since that wasn't really a problem in my case so his PA only asked about it briefly in the beginning.

I think there are several signals that help him determine what type of scarring it is. Whether its palpable, detectable on ultrasound, pain, severity of deformity, calcification, age, bloodflow, etc. are all considered. He didn't give me a final diagnosis until after he ran all the tests then him and his PA left for a few minutes to review everything while I got dressed, and he came back and we chatted for a while.

I know, from what the forum says along with MOST sources you can find on the internet, any acquired deformity almost certainly means Peyronies. And while I certainly don't have all the answers myself, I am just sharing my experience with Dr. Levine about my specific case.
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

porterrobinson

you are very lucky to have such compentent doctors in your country. after covid ill probably fly there too. it seems as if dr levin gemuinely. took the time to review your case and talk about it with you so you get a better understanding. the psychological damage for me was done in the early days of my peyronies where i say self proclaimed experts and they said you have peyronies nothing we can do here is some viagra. idid not understand what was foing on how severe it will get, i got no explanation what the tubes where and where or what the scar tissue is. iwas told the curve is below 30 degree so i should not have a problem which is complete BS as anyone with indentations, ED and rotation to the left of 15-20 degree can tell you it is not fine. so it defi itely pays off to see a good doctor. i still have no 100% certain diagmosis on what causes my ED. i wonder if what i have is similar to you, a slow healing scar but then again, there are indentations as well which appears to be peyronies specific and very annoying. itcreates overall instability. but i never got taken seriously in that regard
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

postrocker

interesting post

did he do a doppler test?
traction helped you anyhow?
37yo
Congenital curvature plus injury during sex - dec.2019
Curve to the left increase plus pain ~35degrees - nov.2020
Pentox (400mgx3) + Cialis (2.5mg/day) + supplements - dec.2020
Traction - jan.2021 onwards (curve now ~22/25degrees)

Benraycamp0

@postrocker:

He did an ultrasound in both flaccid and erect states. No plaques detected on either, and bloodflow and trapping was perfectly normal.

I only did traction for 2 months (average of 4-6 hours per day) and did not see any improvement during that time. I am still contemplating whether to continue with traction, since Dr. Levine said it really isn't necessary unless I really want to gain length. I don't believe I lost any length (but I never really measured myself before), but more importantly I'd like to put this all behind me as soon as possible so I can resume normal living without thinking about this disease on a daily basis. I don't have any significant deformity that would make intercourse difficult and no pain, so 6 months of traction would consume a lot of time that might not give me any meaningful results.
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Asphyxia

Quote from: benraycamp0 on April 02, 2021, 05:44:24 PM
I mean overall he basically sat me down and said "you don't need to worry, you have a good penis. Now go have fun and f*** girls"

I basically conclude from this that worsening of symptoms after orgasm is more likely peyronies

Which leaves me utterly confused regarding my mri results and worsening of symptoms after orgasm

And im guessing you dont experience any worsening after orgasm at all?
Age:23. Onset of symptoms: september 2020.
Curve mostly semi erect about 60 degrees, slight pain
Tried short & prolonged fasts, keto,carnivore, traction and most of the supplements.
Severe digestive issues, probably an autoimmune disorder

Benraycamp0

@porterrobinson:

Definitely is worth seeing a Peyronies expert! I sincerely hope you can make it out to one soon. While I only have been dealing with this for 4 months now, I definitely can understand the psychological toll this has. It is very reassuring to have more information from a reputable specialist. Erectile dysfunction can be checked via a Doppler ultrasound and, while you do have to get injections in the penis to do the test, I will say that Dr. Levine's PA told me that it is a necessary part of a Peyronie's diagnosis since they only see plaques about 30% of the time on the flaccid ultrasound. The injections were just a small pinch, and I had no pain afterwards.  
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Benraycamp0

@Asphyxia:

Not really sure about the worsening after orgasm to be honest. Thats the first time I am hearing something like that happening (but my knowledge is super limited to symptoms related to my case). I don't have that issue.
It sounds like you are still unsure of what you have exactly - have you been able to see a Peyronie's specialist? Dr. Levine and others do phone/telehealth consultations where you might be able to show pictures and describe your symptoms. Just a thought.
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

porterrobinson

oh so you actually had the doppler ultrasound? did you need to take medication for the erection to go away? what is it like?  
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

Benraycamp0

@porterrobinson:

Yes I did the doppler ultrasound. Trust me, I was going into the appointment thinking that I would refuse the erect ultrasound since it required injections. But Dr. Levine's PA told me its really important to do for detection of plaques since they only see plaques in the flaccid state about 30% of the time. It's also really useful to have an erection in the office that Dr. Levine spends a couple minutes inspecting himself.

1 injection to induce the erection, 2 to put it down. Dr. Levine's PA did the first one, and Dr. Levine himself did the other two. Immediately after the injection, they would compress the site and massage the medicine for a bit and then tell you to do the same for a couple minutes.

It was a sting of pain for about 2 seconds, and then a very dull ache (1/10 in pain) for a few minutes afterwards. Apart from that, it was not bad at all. I'm glad I did it since it tells you if you have any Erectile Dysfunction issues, verifies whether you have plaques, and lets Dr. Levine inspect the erection himself.
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Hawk

The into Board is intended for each new member to have just one topic with no more than 10 posts/replies.  As such, this topic is locked.  I encourage you to ask specific questions or post comments on the appropriate boards below on the main forum.  Best wishes.
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