Newly Diagnosed and Coping with Pain

[Steelwings20]

I am new to these forums and thought this would be a good place to start. I am 33 years old and have been having painful erections for the past 2 or 3 months. There is a slight curvature upwards and to the left of my penis and I was referred to a urologist by my primary care doctor. After speaking with the urologist a few weeks ago, they did a very cursory exam and diagnosed me with Peyronies. He said it appeared to be a mild case and told me to take vitamin E supplements 2-3 times each day and to return to see him in another month which will be at the end of this month. I am concerned as intercourse with my wife has become impossible because of the pain. I am able to get an erection but the pain from trying to have intercourse leads to me losing my erection. I have been reading about the acute phase that can last 12-18 months and am trying to figure out how to maintain intimacy with my wife when I am trying to cope with the pain. Also, given some of what I have read about treatment options I am worried about whether I am getting the best advice from my urologist or if I need to seek another opinion. Any thoughts or helpful words would be appreciated.  

[LuisFernandez]

Welcome and good luck on your journey. Been battling this for a little over 3 months myself.
I would recommend talking to another Urologist who can get you on a better regiment. Vitamin-E is outdated and shows lack of knowledge.

What you should be getting is at least Pentoxifylline and low dose Cialis. Possibly L-Citruline and a NSAID for inflammation and pain.
You should get on the Pentox ASAP.

I suggest you talk to your wife and heavily limit, if not stop, sex and masturbation this will only make things worse. Erections are good but i would strongly suggest not to masturbate.

Right now the name of the game is: reduce and stop inflammation. Once that subsides you can look at traction or possibly VED but do not rush into that since you're early.

Also: RELAX. Do your research but stress can cause or at least won't help with the inflammation.

The inflammation will be on the opposite sides of your curves. For me i had also a curve to the left and the top. The curve to the left is gone, because the inflammation there is gone. The curve to the top gets worse because I didn't understand the process of inflammation and didn't stop having sex or masturbating.

Take a look at this paper for how things will progress: https://pdfs.semanticscholar.org/8956/dd38d946a89769b632a91033df6770c359ac.pdf?_ga=2.224878936.318827643.1591929448-877337924.1591929448

First it's inflammation, heat, and redness. I know you love your wife, but you have to do this for yourself no one else will understand or help you in the battle.

This is a good video on inflammation science and diet: https://youtu.be/nZ34N6Eibd8?t=522

Good luck.

[bustedchubb]

Totally agree, you need a specialist urologist that handles Peyronie's.  My situation started the exact same way as yours and in the same areas you are describing.  I went to a doofus and told me to watch and wait.  BIG MISTAKE, as that curve went from 15 degrees to 45ish with major hourglassing.  Just 2 weeks ago, 6 months after onset, I went to see a real reconstructive urologist, and hes taking the total correct stand.  Doing the doppler scan, seeing whats up and looking at possible treatment options.  Varapimil or Xilaflex injections, VED/Traction, etc.  

As far as activity, as Luis said, limit it as much as possible. 10-14 days between sessions is the best.  Not enough to overdue it but not too long that you start losing more erectile tissue due to atrophy.

NO TRACTION devices while you have a lot of pain.  My uro said that it is just going to piss it off.  And you know what, he was right.  I started using the restoreX device about 5 months in and i still had inflammation / pain and i developed a new dent across the top and now i have a 30 degree up bend, too.   If I just had found him before I tried that... Could have saved my weiner.

VED should be safe as long as you get a 3 cylindar medical model and follow posted protocols on forum to a T.

[projectpd]

oops! I guess it's like stretching a fresh wound or scar. I think I've read hypertrophic/keloid scars can get worse from mechanical stretching forces so it would make perfect sense.  On the other hand there are so many agents and methods that might downregulate/counteract  inflammation and fibrosis: you are lucky that you are still in the inflammatory and/or fibrotic phase.  you can read about natural substances that suppress tgf beta 1 for example. I still haven;t dexamethasone/hydrocortisone plus verapamil iontophoresis but I wish I could still be in the acute phase like you.

[LuisFernandez]

Something to clarify, if you're not feeling pain you *might* be able to masturbate using a lot of lube and only the using the head. Careful not to aggravate things or badly re-model your penis. I still have sex, but just use a ton of lube and certainly not as rough as before. But i would still advise against sex since it has caused me pain and re-aggravation.

One urologist gave me some interesting advice about traction and erections. He said never pull on it. But when I get an erection to do VERY LIGHT modeling and pushing against the curve. NEVER PULL. This is what i've personally been doing lately.

As others have said, there's no one-size-fits-all solution. It all depends on your severity, time since injury, places of injury, hormone levels, vitamin levels, Erectile Dysfunction, vascular/vein health, etc.

About l-citruline, i'm extremely apprehensive about it specially if you don't have Erectile Dysfunction.

[Steelwings20]

Thanks to everyone that have been so welcoming. It is great to know that this community exists and I have been able to take the time and look through the resources. I think stopping sex and masturbation makes the most sense for now given the risks of aggravation. I do plan to seek out a urologist that may be more aggressive in treating Peyronie's rather than just using vitamin e and waiting. However, I also understand from all the reading that a lot of getting through this phase will involve waiting.

[LuisFernandez]

Yep that makes a lot of sense. Waiting and vitamin-e i think are a good way to start. Then add some Pentox when you see a new Urologist.

If you get a NSAID regimen, take advantage of it and don't waste it by aggravating things. You only get one regiment of that because you can't take it for too long.

A doppler ultra sound i think would be great if you can get it, i would push for it to see where the injury is. Talk to them about any acute pain you felt and anything pain related, no need to downplay things.

I, personally, would not recommend cialis or l-citruline unless you have ED, which it sounds like you don't. If you do, be extremely careful with partial erections or priapism.

[projectpd]

there are some studies and reports of improvements/cures in the acute phase after using iontophoresis and antinflammatory agents spefically hydrocortisone, and dexamethasone (with verapamil). both those can be obtained cheaply. in addition to iontophoresis, transdermal application using DMSO, some other transdermal carriers, and/or 3Mhz phonophoresis (mass produced cheap gizmo from China) may be options. you would know if working from reduction in pain. When i was in that phase I didn't really know about this.  I did try serrapeptase though and that seemed to stop the pain.  I don't know if it just an analgesic , masking the pain but not doing anything useful , though.

[LWillisjr]

Acute phase can last 12-18 months, but it does not mean you will have pain this whole time. My pain lasted for maybe 2-3 weeks, and I had a pretty textbook case.