Intro - Newbie

[ozbazz]

I'm from Adelaide, Australia and I'm an reasonably active 62yo who was recently (2 months ago) diagnosed with Peyronies. I suffer  very painful erections which wake me up most nights, sometimes 4-6 times a night. Sex (with my wife of 36yrs who is only a 56yo) is just not possible anymore. My urologist, whom I have only visited once, has simply said take 1000iu Vitamin E caps twice a day, go away and come back in 6 months time if it doesn't disappear. It's driving me up the wall. I also suffer lower arthritic back pain (degenerative discs L3-L4-L5-S1) and take strong pain relief (paracetamol 500mg/30mg codiene X 2) at least twice daily. I suffer bronchiaectasis, asthma, sleep apnoea (use CPAP), anxiety/depression (150mg daily Effexor), gout (150mg Allopurinol daily) high BP (1mg Tandoropil daily), cholesterol (20mg Zimstat nightly) and Restless Leg Syndrome (2.5mg Valium + 100mg Tramedo nightly). I play golf at least once, sometimes twice a week and walk the course unaided. I am semi-retired and do some part time consultancy work in the building and construction industry, but due to my lungs and back, I can no longer safely be on building sites and I therefore have a part disability pension. My penis curves upward severely when erect and when not, often retreats into my lower body (like a turtles neck into its shell) which is also very uncomfortable when sitting and embarrasing when in social company as prompt 'adjustment' becomes necessary. Can you please offer any encouraging words in regard to alternative treatments? Is there anything obvious in my introduction that you could comment on? Any assistance or support would be greatly appreciated.      

[Hawk]

Ozbazz,

It is nothing short of gross incompetence when a medical professional that presents themselves as treating conditions of the penis, tells a man with Peyronies Disease to do nothing.  Obviously men can nothing without paying a "professional".  The advantage to you is that you now clearly know what kind of urologist you had.

There are things that WILL give you slight to major improvement (VED and/or Traction).  There are other things that might give you significant improvement if not contraindicated by your other medical condition and meds (PAV cocktail).

Other supplements like ALC, ubiquinol and healthy diet and life style may help your Peyronies Disease and more.

This will not be instant improvement and will take some commitment on your part to educate yourself, find a good doctor, and implement the plan.  Traction alone will get rid of the turtle effect you mention within a week.  The VED would likely do the same.

Best regards
Hawk

[james1947]

Ozbazz

You may check out the Australian doctors at:
Peyronie's Doctors – Locations and forum opinion - Peyronies Society Forums
&
Peyronie's Doctor in Australia? - Peyronies Society Forums

James

[ozbazz]

Thanks James and Hawk for your responses. I've just returned from an uncomfortable vacation and will now research for Aust Doctors. I will also discuss VED and Pentox with my GP. I have an appt this week. I've also spent quite a while looking through many of the forums. I live in hope. Thanks again.
Regards,
OzBazz

[BrooksBro]

As usual, Hawk is correct.  This study, conducted simultaneously with the last Xiaflex study, shows there is a high degree of personal distress regardless of the curve severity.


Peyronie's bother possible regardless of curvature degree - - ModernMedicine

Peyronie's bother possible regardless of curvature degree

In Peyronie's disease patients, high levels of bother and distress are possible regardless of the degree of curvature, according to phase III data presented at the Sexual Medicine Society of North America (SMSNA)/International Society for Sexual Medicine (ISSM) joint annual meeting in Chicago.

The findings came from Auxilium Pharmaceuticals, Inc.'s phase III IMPRESS (The Investigation for Maximal Peyronie's Reduction Efficacy and Safety Studies) trials that assessed collagenase clostridium histolyticum (XIAFLEX), an in-office biologic therapy for the potential treatment of Peyronie's disease.

A baseline analysis from IMPRESS focused on the psychosocial impact on men with Peyronie's disease; specifically, the level of disease bother and distress associated with Peyronie's disease as related to the degree of penile curvature deformity. At baseline, results showed that all degrees of curvature deformity evaluated in the studies may be associated with high levels of bother and distress. Specifically, more than half (58%) of patients with lesser levels of curvature deformity (30 to 60 degrees) reported that they were "very bothered" or "extremely bothered" about their condition.

Additional results showed that 73% of patients with curvature deformity of 60 to 90 degrees were also "very bothered" or "extremely bothered" about their condition. A high level of patient-reported moderate to severe distress over Peyronie's disease was also noted among subjects with curvature deformity of 30 to 60 or 60 to 90 degrees (80.5% and 90.5%, respectively).

"It has long been assumed that the less the penile curvature deformity, the less a patient would be bothered by the deformity, but this analysis shows that patients with any degrees of curvature (30 to 90 degrees) may experience high levels of bother and distress," said James Tursi, MD, of Auxilium. "This supports that measuring curvature alone would not capture the full impact of the disease and consideration of the psychosexual components should be an important aspect of managing and treating patients."

[james1947]

BrooksBro

Yes you are right regarding Hawk and the Auxilium data about distress is right also.
I am just wandering what about the distress of people that lost from they penis length to Peyronies 1/2", 1", 2", and 3" ?
What about lost of up to 1/2 of the girth?
It will be nice if someone will make a research in the subject also.

James