My History With ED, Peyronies, Urologist

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Baldeagle

Hello, found this forum recently when doing an internet search for information on Peyronies Disease.   What a great forum with lots of information for those of us having this issue.

My history:

Wife and I are in our late 60's and for the last 3 or 4 years I have been having issues with ED, then about 2 years ago developed Peyronies.
At 1st the ED was not serious enough to seek help but gradually got worse.   When I had issues was able to get erections but found I would frequently go soft before completing the sexual experience.   Sometimes during foreplay I would get an erection and by the time we attempted insertion it would not be adequately hard for penetration.   Found more and more it was necessary to satisfy my wife sexually in other ways than penis penetration.

Then 2 years ago out of the blue (can not recall any accident causing damage) I started to experience a considerable bend to the left and slightly up.  I have always had a slight left bend but this was much more than I had normally.   Gradually this bend evolved to an almost straight up bend (dorsal?) with a slight left curve.   I can not feel any plaque lumps at the point of curve and have never experience any pain associated with my Peyronies.   I would estimate my curve up is somewhere between 50 and 70 percent.   The curve has not prevented intercourse (the ED does) and I do not experience pain during intercourse if I can maintain an erection.  The ED issue worsened with the onset of Peyronies.

1st went to a Urologist over a year ago for Peyronies and ED.  (will do another post here with an overview of that)

Jonbinspain

Baldeagle;

Until we see your post re the Urologist's visit, we don't know what he has diagnosed. Or what he has prescribed, if anything. It most certainly sounds like classic Peyronies. I would also suggest that you urgently get your testosterone levels checked.

You can read about all the most useful treatment options here. These include, Pentox, low dose Cialis, ALC, Ubiquinol, etc.

Re the curve, traction, VED, or both will help.

Baldeagle

My history with Uroligist:

My 1st visit to a Urologist for Peyronies and ED was over a year ago.  After describing my symptoms he informed me I have Peyronies and spent quite a bit of time trying to educate me. (causes, possible cures, history).  Without being specific he mentioned a new treatment coming up in the near future (probably Xiaflex injections?) pending FDA approval.

For ED he gave me sample kit for my ED (Viagra, Cialis, Livetra, Staxyn).   All of the samples worked wonders for ED and I have minimal rare side affects (slight flushing I think, having so much fun can't remember).   After trying the samples had him give me prescriptions for Viagra and Cialis.   They were very expensive so I purchased generic versions of Cialis and Viagra from a Canadian Pharmacy for considerably less and found them to be just as effective as the non-generic. Were manufactured by Sava, an Indian drug company.   Settled on a low dose version of Cialis (5mg one day, 2-1/2 the next) and found that virtually eliminated the ED issue.  Interesting, have also found that if I stop taking the Cialis the ED problem is not near as bad as it was?   If I have been off the Cialis and want to have sex will take a 20mg Cialis (or 25 or 50mg Viagra), then go to the low dose Cialis routine.  

For Peyronies he prescribe Colcrys, two .6mg daily.  Had no side effects (was told they were common)  but found the Colcyrs to be very expensive, $1060 for 180 tablets (3 months supply) with medicare paying for about $700, $360 for my out of pocket cost.   Found a generic version also from a Canadian Pharmacy for about $90 for 200.  Have been taking the Colcyrs for about a year and have not noticed significant change, bend still somewhere between 50-70 percent up.

Received a call from his office a week ago and they mentioned a new treatment that may be beneficial to me.  Have an evaluation appointment scheduled for the last of this month.   Said they would like to evaluate me to see if I could be considered for this treatment.  Explained that they will giving me an injection to produce an erection so the Urologist could do an examination to determine if I would benefit from the new injection treatments.   They explained the treatments (assuming they are Xiaflex injections, they did not say) as being a series of injections followed by messages to try and get the bend out.  They indicated they will give me more information on the day of my examination.

If the examination determines I am eligible for the treatment will have to make a decision on what to do.  Wondering if I would qualify, can not feel a lump at the point of bend, bend is up?  Not sure I will decide not to do it, not sure if I will.   Because my Peyronies is not painful and with the present bend can perform penetration and intercourse it is not something that is absolutely necessary.   Also not sure what the expense will be, if my insurance will pay for some, and have some concerns about it being successful and side effects after reading here.  Will gather information and discuss with the wife after the examination.  

Any suggestions from those on this forum would be appreciated.



Baldeagle

Quote from: Jonbinspain on July 15, 2014, 11:32:05 AM
Baldeagle;

I would also suggest that you urgently get your testosterone levels checked.



Had it checked 2 years ago (testosterone) and it was normal.  Have no other health issues.

Did a 2nd post with information on the Urologist visits.

james1947

Baldeagle

Normal T range is very width. It means you can be in the range, but to fight ED or Peyronies, you should be in the upper side of the T range!!!
The range for our age (myself 66+) should be between 190 to 740.
My result was 693 in April 2014.
How much was your T check?
You are writing that you are in your late 60's, I am advising you to test your T levels at least ones a year.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Jonbinspain

Colcrys is Colchicine. It is comparatively expensive and can have some nasty side effects, you're lucky if you don 't suffer from them. I would investigate Pentoxifylline, as an alternative. You can read all the information about it on the site.

Please be aware that this disease can be very "individual"  meaning that what apparently works for one guy does not for another. However, as previously stated, you can read all about the treatments that appear to be the most universally effective on the site.  

inkhorn

Baldeagle- I too am in my 60's and have not had a natural erection since pc 5 years ago. Peyronies came along about 2.5 years ago. It's great that ED meds work for you, but you should look into VED for both therapy and great lasting erections. Regards Inkhorn

Baldeagle

Quote from: james1947 on July 16, 2014, 03:47:53 AM
Baldeagle


How much was your T check?


James

James, my T level was 395, normal according to my Urologist.

Had a visit to my Urologist and ultrasound since my last post.    He is considering me for Xiaflex injections and had me fill out a form so we could determine what my insurance (medicare blue cross advantage) would cover.    I asked him if the injections would work, told him I could not feel plaque, he said he could feel plaque?   At my request he scheduled an ultrasound.   Also I mentioned VED and traction.  He did not recommend traction but said VED may be beneficial and I have an appointment in the near future for a VED fitting and training, the device is approved/covered by medicare.

Had the ultrasound a few weeks ago and apparently by comments made by the technician and Radiologist no significant plaque was found?  Have another appointment with the Urologist later this month to discuss the results of the ultrasound.

From reading posts here most with Peyronies have significant plaque, and many experience significant pain, at least when when the Peyronies condition (I think calling it a disease is not accurate) first began.   I cannot feel plaque, never have had pain, and am wondering if the Xiaflex injections would be beneficial?  Not sure if that is what the Urologist will recommend but want to be prepared if he does.  

james1947

Baldeagle

As I have written before, for our ages the range is between 190 to 740.
You should be close to the top and not in the middle somewhere.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum