I think I may actually have congenital

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diehardpatriot

I think I may have had congenital curvature this whole time and my plaques were actually thrombosis veins.  Can you guys help me sorr if I have congenital or Peyronies?
-I can't rmemeber if I've been curved or not my whole life
-I do get hourglassing SOMETIMES
-I curve to the right about 20 degrees and up about 10 degrees with some clockwise twisting. The twist is there even when flaccid
-sometimes the bumps (which I thought were plaques) are harder at times and softer at times. Sometimes they are sore sometimes they are not
-these bumps would enlarge mostly after sex or masturbation

The reason I put this in the surgery thread is because if I find out this is congenital. I will consider stage surgery. However it sucks though because the injury I recently sustained will prob delay any surgery. I see a specialist on Wednesday to get a proper diagnosis. A few more questions

-Do all injuries result in scarring ? My injury was 2.5 weeks ago and seems to be healing well. I am on pentox and coq10. It's just a little sore when erect and gets sore after ejaculation. I'm gonna abstain for 2 weeks and see what happens.

-if I am not sure if it scars, should I get the surgery anyway?  
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

diehardpatriot

Also. Will a Doppler pick up scarring this fast? It'll be 3 weeks since injury when I get the diagnostic tests  
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

JohnWright

I had a curved dick my entire life.
In 2013, I heard there is a thing called Peyronie's.
The next five urologists I visited all said it was Peyronie's.
The male sexual health specialist I finally decided upon said the others didn't know what they were talking about. I have a congenital curve, says he. Tests don't show any plaque or scaring, nor is there any that can be felt. However, I did have a little hourglassing...sometimes.

Congenital curve. Surgery in 2016. Life is better!!

jj21

diehard any update on your condition?

I'm also speculating that I may have thrombosed veins.

Cheers,
JJ
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

TonySa

An ultrasound can look for plaque and if none it's likely cogenital.  Would be great news as then it shouldn't worsen and as you describe the curved it sounds very functional without needing to risk the possible side effects of surgery.
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.

diehardpatriot

JJ: I DID have thrombosis veins AND Peyronies. My veins come and go. Some days they are very hard some they are not. They are never painful. It is now obvious to me that I did have peyronies the whole time. I honestly even doubt that member JohnW had congenital curvature. I mean cmon, how is it possible for a congenital curve to get worse and worse over time. Hourglassing is definitely NOT normal either. I've spoken to my dad and a few of my friends who said they have never had any type of hourglassing flaccid or erect. After sex before any of my penile injuries and before I had any pain, sometimes my flaccid penis would bend 90 degrees. Sometimes it would turn extremely hard flaccid, to the point where if I was laying down my penis would be pointing up to the roof, but it was still at flaccid length. I believe if I never had any injuries, I most likely would've ended up like JohnW. A normal sex life and then like him one day the bend would get really bad.

Tony: correct, the bend was never an issue. Id be happy with it if that was the only issue. It was after an injury that left me in pain for months, I'm talking 8 months. It's still not fully healed and has left some scarring along with ruining my sex life less than a year after it even began.  I have pain inflammation and a small tiny lesion where I was injected to get an ultrasound LAST MONTH. (Injection from Levine). That is not normal either. I think we all have very limited knowledge about peyronies, doctors included even the best ones. The ultra sound saw no scarring. They do what they can with what they know and that's all they can do. Dr Levine told me I don't have Peyronies while a crappy uro at Kaiser told me I do based off of the hourglassing symptom alone. I begin to wonder who really was the crappy doctor. they all just do what they know, some apply the knowledge better than others and that's what separates the good and the bad docs. Levine even told me to continue having sex, hahaa imagine if i listened to his advice... bottom line is I don't trust doctors with this condition anymore, at least for my case. If I can relieve the pain I will be happy with my penis as is, that's the Main goal right now. Deformity is ok with me.
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

jj21

Sorry to hear that Diehard.. Has there been no improvement in your conditon? What treatment have you tried so far?

Would you be able to tell me how the doctors diagnosed the thrombosed veins?

Thanks,
JJ
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

diehardpatriot

JJ. It's okay, I try to not let this get the best of me. I've tried coq10, pentoxifylline, bromelain (which may have slightly helped pain) , magnesium supplements (which I think helped for anxiety, I would take these again), and that's it. I used to eat a very carb heavy diet I should mention while trying all of these. None of these supplements or medications have worked, at all. Maybe without the Pentox I would be worse off right now, to be fair my deformity has not gotten worse at least perceivably. But pain wise nothing helped besides time and abstinence. So now I Will try extreme abstinence, keto, and intermittent fasting. Hopefully this helps.  
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

diehardpatriot

JJ. It's okay, I try to not let this get the best of me. I've tried coq10, pentoxifylline, bromelain (which may have slightly helped pain) , magnesium supplements (which I think helped for anxiety, I would take these again), topical H100 (I still use this only because I paid $800 for it, I don't think it actually does crap) and that's it. I used to eat a very carb heavy diet I should mention while trying all of these. None of these supplements or medications have worked, at all. Maybe without the Pentox I would be worse off right now, to be fair my deformity has not gotten worse at least perceivably. But pain wise nothing helped besides time and abstinence. So now I Will try extreme abstinence, keto, and intermittent fasting. About the veins, I was never diagnosed, it's the fact that sometimes they're there and sometimes they're not, along with the fact that they were semi circles sort of like a half ring. These are symptoms of thrombosis. Some people have pain with their veins. I only had a discomfort burning type feeling that would go away if I rested my penis.
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Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

jj21

I'm glad you're not giving up and still continuing with different treatments.

Hoping you see some improvement.. I'm not givng up either.
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Frank55

Diehard - are you still going to see Dr. Lue? His opinion on this may be helpful.
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step

diehardpatriot

frank: yes I am, in January though because that's when I switch to  PPO insurance. Definitely no injections this time though. Flaccid ultrasound only. I agree his opinion can be helpful  
Penis injury in late 2017. A lump formed at injury site that caused no deformity, just pain and a palpable lump. Pain is improving through proper rest and use, diet, and mindfulness. I am always learning and looking to share things that have helped.

Frank55

Glad to hear it. I hear you about those injections. I don't react well to those either.

Please let us know what he says. He is one of the best. Always helpful to have his input on the board.
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline ED possible but not taking drugs, shots or using VED
Now evaluating options for next step