18 year old with peyronie's

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doraan

hi,

Im 18 years old and currently live in Sydney Australia. 1 1/2 years ago I was diagnosed with lupus and just today I had a confirmation diagnoses of peyronie's. This condition really reared its head during a sexual injury almost 2 years ago. This condition has me scared out of my mind and would love some advice. Overall my curvature is not much a problem at all, however the number of lumps and plaques i have does worry me. I have 3 small bands running horizontally on my right side, a thick band horizontally on my left, a lump near the head of my penis on the left side and about a 15 to 20 degree curvature to the left. I believe I also have a long band of scar tissue that runs the length of my penis that I think i did when i was 12 years old. I believe the reason that I have peyronies has alot to do with having the autoimmune condition lupus. I would love advice on what i can do to improve my condition.

I was diagnosed today after visiting a urologist, which he was useless (Dr Ende). He physically examined my penis and said i had peyronies according to my description but that he could feel no lumps when my penis was un erect. Could this be because my plaques have not calcified ? he prescribed me nothing for my condition and said to check back in 4 months. I have been researching this condition for a while. As I have a very close relationship with my GP I am considering asking her for a prescription for pentox as i have heard it is one of the best non-surgical options.

Right now, i can live with this condition as it is but i can not afford this to get any worse, which i am afraid it will as a result of lupus.

This is a list of medication i am currently on for lupus:
*Methotrexate 25mg weekly injection

*Prednisone 5mg daily

*plaquenil 200mg daily

*folic acid 5mg daily

I would like to know from anyone with experience if any of the medications above will make my condition worse ?

These are currently the medications i am taking for peyronies:

*vitamin e 800ui daily for over a year (no visible benefit)

*acetyl l carnitine 2 grams daily for 2 months ( have seen improvement in erection quality, girth, and plaque on top of penis).

* vitamin d3 500mg every 3 days

If anybody sees any issues with my treatment please point them out and if anybody with experience can tell me whether or not i should try pentox that would be great. Also any other useful treatment suggestions or specialised urologists near sydney, australia. any advice would be great

 

George999

Welcome Doraan,

Sorry to here of your situation with Lupus and Peyronie's.  Neither are any fun.  I do, however, have a few suggestions for you.

1)  You need to hook up with other Aussies here on this forum.  If you go to the "Urologists and Other Docs" topic, you will find subtopics that are focused on the needs of Australians.  You need to check that out since they can direct you to competent Peyronie's care in Australia.  Identify other Austalian members with a high number of posts and PM them for private advice.  Due to the fact you are on other meds for Lupus, you really need competent care for Peyronie's from a qualified doc who specializes in Peyronie's, NOT just a urologist.

2)  You really need to scan the Internet for REPUTABLE information regarding Lupus.  KNOWLEDGE IS POWER.  Beware of any site promising a quick and easy cure.  But do look for information from known medical experts.

3)  Vitamin D3 is crucial.  Hopefully you are getting your blood tested for serum Vitamin D levels.  With lupus especially you should aim to keep your vitamin D levels high ... like 50-70ng/ml.  Most docs think this is too high, but they are wrong.  See http://www.grassrootshealth.net/ and http://www.vitamindcouncil.org/ for more information.

4)  Watch your blood sugar levels carefully.  Your blood sugar levels after eating should not be going over 122mg/dL.  Elevated blood sugar and elevated insulin levels are extremely inflammatory and either or both will cause problems with both Lupus and Peyronie's.

All the best to you!  - George

LWillisjr

I'm curious, what did the doctor do to induce an erection?

Also, my understanding is that any plaque or scar tissue should be felt when flaccid. Any curvature will obviously be seen if present with an erection, but scar tissue is very difficult to feel during and examination while erect.

Did your doctore state what he based his diagnosis on?
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

doraan

george,

Thank you so much for the tips. I will try to find those posts as soon as possible  

doraan

lwillisjr,

The urologist did nothing to induce an erect nor did he perform an ultrasound. All he said was that if the only treatment option was surgery if the curvature was too severe.  

Maxinator2016

don't know if you are still reading this

I am 19 yo and also have Peyronie's but no lupus
Don't remember any sexual trauma that might have caused this though

QuackAttack

Doraan,

Since you have lupus, you want to be careful with all of the medication you are taking and how it would interact with Pentox. I, personally, found Pentox to be useless and the headaches were not worth it. After taking Pentox for 3+ months, I started getting splitting headaches at the base of my skull, which is a side effect of Pentox.

Stabler

Not sure this member is still active there have been no posts since 2013

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.

Maxinator2016

I am not sure but maybe the Lupus might have anything to do with your condition, since Lupus is a systemic disease causing inflammation due to the deposit of immune complexes; inflammation can lead to necrosis and fibrosis? Since you have multiple lumps it seems unlikely that it has been caused by a trauma

Good luck
Maxinator