I was diagnosed last week with Peyronies disease. Not sure why, not in an active relationship, although I had a failed lower lumbar fusion @ L4-L5/S1 in Jan 2020, and always have lower back/groin pain and I suspect it's related to that somehow.
I noticed plaque (didn't know what it was) forming around the bottom of my penis approx 2mos ago during masturation and thought/hoped it would just go away. Over the past 2mos the plaque increased and it became more difficult to achieve an erection, although I did not have a bend until the past week or so. Now when I masturbate/ejaculate I have penile pain that lasts for days.
Saw my urologist last week and he diagnosed me with Peyronies, suggested Xiaflex treatment (whether or not Medicaid/Medicare will cover it I have no idea).
My next urologist appointment is in 5weeks and he wants me to do a "doppler study". Also, not sure what that is.
HDGuy, I'm sorry to welcome you to the club. Be sure to read the survival guide, as it offers tips to help you play an active roal in bettering your condition.
We're all in the same boat, relatively speaking, so read the guide, then ask any questions - we'll help if we can.
Best,
Nemo
Xiaflex can be really expensive FYI. I would read through these treatments: https://www.peyroniesforum.net/index.php/topic,3180.0.html and get started with VED and traction. These both can really help straighten out your penis. You also want to get as many erections as you can which will help the tissue expand and hopefully soften up any plaque that's building.
Unfortunately my next appointment with the urologist is a month from now (6 weeks from the first). I've moved to a new phase, I feel a lot of hard plaque developed on top of my penis- it's extremely painful, I have a lot of nausea, feels like someone kicked me in the groin.
I watched a video from the Mayo Clinic that said that men with indentations more than a curve don't respond well to Xiaflex. I would just like lessening of the plaque at this point- it's very uncomfortable.
I'm not even sure what to do at this point.
A doppler is simply what my doctor calls a penile duplex... they will use ultrasound on your penis to determine where the plaques are.
What do people do for pain mgt? It's the first time it's been really been this bad- I can feel quite a large bit of it at the very bottom of my penis, and the rest goes all the way up. At first it started only on the side but it seems to be all over now. I'm very nauseus.
I believe most recommend Ibuprofen for both pain and its anti-inflammatory properties.
If you don't have any medical issues that forbid Ibuprofen (or other NSAIDs), I'd sure give it a try.
Regards,
Nemo
You might also try Celebrex if your Dr will do it. It can help immensely with back and pelvic pain along with peyronies. When I could take medication I took Celebrex consistently for about 7 years for arthritis in my back and it was a miracle drug for me. You could also investigate heat therapy just be mindful about using controlled and not damaging your penile tissue. There are articles regarding such. Don't despair - you'll make it through this!
Welcome to the Club !! ;D
....Hope we can all leave it soon... :-\
Quote from: Mikel7 on July 31, 2021, 05:53:19 AM
You might also try Celebrex if your Dr will do it. It can help immensely with back and pelvic pain along with peyronies. When I could take medication I took Celebrex consistently for about 7 years for arthritis in my back and it was a miracle drug for me. You could also investigate heat therapy just be mindful about using controlled and not damaging your penile tissue. There are articles regarding such. Don't despair - you'll make it through this!
That's a thought. As I said I had a failed lumbar fusion earlier in 2020, so I have pelvic/groin pain all the time now anyways. This is just one more thing. I usually just take a combination of ibuprofen and tylenol for back pain anyways.
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