Day to day issues vs. sexual ones

[Rockout]

Whenever I have discussed my peyronies with my Uro (diagnosed July 2010), he always asks about pain to me of my fiancée - that seems to be the barometer. I have a two 10/20 degree curves and everything still works fine sex wise.

My biggest discomfort with Peyronies Disease is the 'turtle head' affect caused by lack of elasticity and the head rubbing against pants and such that formerly never bothered me. I had to switch from briefs to boxer briefs as I was going mad with the constant fidgeting it produced.

I have had to stop spinning (stationary bike class) at the gym as when I am hunched over, I am preoccupied with constantly trying to adjust things.

Anyone else had to deal with these issues and if so, what have you done to manage the situation?

[fubar]

Rockout

Turtle neck effect and pain are common with this disease.Pentox and co q 10 along with the ved protocol will help greatly with this issue you are having.

Fubar

[Rockout]

Rockout

Turtle neck effect and pain are common with this disease.Pentox and co q 10 along with the ved protocol will help greatly with this issue you are having.

Fubar

Thanks Fubar - I am not really having pain, it would be more of a sensation that things are not properly adjusted more than anything else.

Has anyone else had to give up or modify non sexual activities and/or alter clothing selections? I do recall one person talking about not being able to wear a nice pair of jeans they owned but they cited pain as the reason.

[Skjaldborg]

Yes, certain positions are uncomfortable that didn't bother me before. It was worse when I first got the disease and I couldn't kick a heavy bag for martial arts training because it would get pinched weird and really bother me. Everything felt so rubbery instead of spongey, if you will.

It has gotten a lot better and the only time this bothers me is when it's cold outside. That may just be normal shrinkage though

As George Costanza might say, "I was in the pool!"

Skjald

[Woodman]

Yes, I have had to modify things over time and in diffrent periods of time. You know with Peyronies it has a mind of its own in the end. You never know whats going to happen with pain and discomfort also with progression as well. Over time dealing with pain and discomfort I ve had to wear loose fitting shorts for a period of time. I ve even gotten to the point I had to wear shorts with no underwear. I only wear shorts with no underwear at night to sleep because having night time erections being restricted causes pain from being restricted all night long. I try not to sleep on my stomach at all when I do I keep a pillow under one leg to keep the pressure off my crouch. When sleeping I also keep a pillow between my knees so I do not squish my crotch with my legs at night. When working I never lay on my stomach if I have to I arch my back to keep the pressure off my crouch. There was a period when I could not ride a dirt bike or ATV cause of the pain. I have to wear jeans that are not too tight. If they do not have a little breathing room I won't wear them. For the turtle effect I ve noticed when my inflammation is up or its making a change the turtle effect seems to appear. If you treat the pain and inflammation your turtle effect will improve. I am currently on L argiinine, ALC, CoQ10 and one other anti inflammatory. The CoQ10 has helped with the pain and inflammation and the other two help with night time and spontaneous erections. This helps me by stretching things out and improved blood flow.

Hope this helps a little sorry for the long post.

[Rockout]

For the turtle effect I ve noticed when my inflammation is up or its making a change the turtle effect seems to appear. If you treat the pain and inflammation your turtle effect will improve. I am currently on L argiinine, ALC, CoQ10 and one other anti inflammatory. The CoQ10 has helped with the pain and inflammation and the other two help with night time and spontaneous erections. This helps me by stretching things out and improved blood flow.

Gentlemen, thanks for the replies, it really helps!

I have adjusted to the condition by:
1- Becoming more tolerant of the sensation and not want to adjust every five seconds
2- Switching from briefs to boxer/briefs
3- Avoiding certain physical activities
4- Stopped wearing certain pants

***This may be better suited in the Oral theraphy section***
If CoQ10 helps with pain (and I would not decribe myself as having pain at all, more discomfort) and inflammation, why would one take something like Potaba or Pentox - are they not to treat similar symptoms?
If I do not have issue with night time or spontaneous erctions, would I persue a course of L argiinine, ALC?

[hopeful_one]

Rockout

I'm 11 months into having Peyronies Disease and am still in the acute/active stage so for now I don't wear any heavy pants, jeans or shorts. I found it to be a lot more comfortable to wear light, loose fitting clothing. Anything that's constraining ends up making me feel uncomfortable which I believe ends up causing some inflammation. It's not so much about pain, but more about discomfort, inflammation, some numbness, etc.  I also have a hard time sitting in a chair for more than an hour or so, so I work more from a sofa, sitting back or reclined. In addition to Pentox (started 9 weeks ago) and the rest of the supplements, I also take one Advil in the morning and one at night. I also take a hot bath at night, before bed. All of this helps but it doesn't solve the problem of Peyronies Disease, I think we all just have to go through several months of healing and hope that we exit the acute stage without too much damage.

hopeful

[Rockout]

Hopeful: Thanks for your insight.How can you tell if you are in the acute stage and have inflammation? In my case, I first had the discomfort, fidgiting stage, followed by a dorsal curve upwards (roughly 20 degrees), went to the Uro and within a month developed a 10-15 left curve. It has been like that for six months or so. My Uro put me on Celebrex (anti-inflammatory) for six months and I just finished that script.

Do you also use a VED in your treatment?  

[Woodman]

Rockout

How did the Celebrex work out for treating your symptoms? Also how much are you taking a day?

[Rockout]

Rockout

How did the Celebrex work out for treating your symptoms? Also how much are you taking a day?

I didn't really find it did much of all but that does not mean it did not keep the area less inflammed. i looked at pictures from July 2010 and from today and things look identical.
I don't know what the dose was but I could find out the next time I am at the pharmacy. It was one pill daily.

[Woodman]

Thats great Rockout it hasn't gotten worse. I started Celebrex again a few weeks ago. Its seems to be just starting to work a little bit.

[Rockout]

Its seems to be just starting to work a little bit.

What would evidence of it working be?

[hopeful_one]

Hopeful: Thanks for your insight.How can you tell if you are in the acute stage and have inflammation? In my case, I first had the discomfort, fidgiting stage, followed by a dorsal curve upwards (roughly 20 degrees), went to the Uro and within a month developed a 10-15 left curve. It has been like that for six months or so. My Uro put me on Celebrex (anti-inflammatory) for six months and I just finished that script.

Do you also use a VED in your treatment?

Rockout:

My main deformation right now is distal tapering from a scar that runs circumferentially from top to right (about 90 degrees) about a half inch before the glans. That deformation made itself known in December 2010, although pain started way back in April 2010. Shortly thereafter 2 new areas of inflammation showed up about a half inch closer to the body than the original scar. I can tell that I'm still in the acute stage because those two areas vary throughout the day between almost normal feeling and painless to moderately inflamed and moderately uncomfortable.

I tried the VED but had some pain and an increase in inflammation and decided to stop using it. I still have good blood flow and nightly erections so I don't need the VED to help in that aspect but only to correct deformity. I decided to wait until I know I'm past the acute stage before continuing with the VED. It's much more important for me to keep this condition from spreading rather than fixing the deformation, I can work on that later. I do have an appointment with Dr. Lue at the end of this month which will include an ultrasound and should give me a much better idea of where I stand with my Peyronies Disease.

I'm currently taking 200mg of Ibuprofen in the morning and 200mg at night but was considering a switch to Celebrex. So, that would be great if you could let us know your dosage on the Celebrex. Have you noticed anything in the days that you stopped using Celebrex?

hopeful

[Rockout]

Woodman and Hopeful_One

I called the pharmacist a moment ago and I was taking (200mg x1) of Celebrex until a week or so ago. No real difference in anything that I can tell.

I would not describe my symptoms as having a degree of variability. The only real sensation I have is the turtle-head effect while sitting because of the lack of elasticity and the gland is being pulled into my groin area. This leaves in a constant state of wanting to adjust things.

I also experience a slight twinge on occasion however I would not describe it as being painful.