30 year old diagnosed seeking advice

[arnold]

Hi everybody, I am a 30 year old male from Montreal that was diagnosed with Peyronie's disease. I began to have pain while having erections in January and discovered a small bump in my penis. My urologist diagnosed me with Peyronies and gave me vitamin E which did not work at all. Since then my condition worsened to the point where I can no longer have a sexual relation with my wife because the pain is too intense, the size of the plaque in my penis has significantly increased as well. I do not have a curvature but I noticed that the area where the plaque has slightly less girth.

The frustrating part about my situation is that seeing a specialist in this condition takes up to 6 months in Quebec while my condition is worsening every week. I began to look for treatment in the US to save time.

- Does anybody know a physician specialised in Peyronie in Vermont, New England or Maine? So far, the closest clinics I found where in Boston, which is a long 6 hours drive.

- Did anybody go to Men Health Clinic in Boston? Toughts?

- Does anybody have experience with other clinics in the Boston Area?

- Did anybody got through the situation I'm in where the condition is worsening every week without signs of stopping. This is particularly worrying. My urologist seems to be surprisingly clueless about Peyronies disease and it is very frustrating.

- Can sexual activity worsen your condition? My urologist recommended that I stop my sexual relations with my partner until the inflammation gets away but it doesn't seem to make any difference on the progression of the disease.

Thanks in advance for your time and sorry my English isn't perfect.

[arnold]

Another question would be that I red the 'best initial treatment" in the must read section of this website and I am relatively clueless about all these medications does one all take those at the same time? Does anybody have experience with those medication and give me an example of what they take in a day? CO Q10, Ubiquinol, Acetyl L-Carnitine, L-arginine ... that seems like a lot of pills to take in a day, it surelay cannot be all of them !

[bigfish]

I live in Maine and I too was recently diagnosed with Peyronies Disease. There are no Peyronies Disease experts in Maine that I am aware of, the list below came from another web site and there are names here as well. I saw Dr. Alex Vanni at the Lahey Clinic, he's young but seemed familiar with the disease and put me on a three drug regimen which was appropriate in my mind. I got an appointment within a week no refferal required. How well he manages my disease only time will tell. Lots to learn I'm struggling to grasp it all. Good luck.
Big Fish

Dr. Nelson Bennett, Jr.
Lahey Clinic Medical Center
41 Mall Road
Burlington, MA 01803
Tel: (781) 744 1590
Fax: (781) 744 2780

Dr. William Conners
Men's Health Boston
One Brookline Place, Ste. 624
Brookline, MA 02445
Tel: (617) 277-5000
Fax: (617) 277-5444

Dr. Ricardo Manuel Munarriz
BUSM/Dept. of Urology
720 Harrison Ave, Ste. 606
Boston, MA 02118
Tel: (617) 638-8485

Dr. Michael Philip O'Leary
Brigham & Women's Hospital
45 Francis St. AMB11-3
Boston, MA 02115-6105
Tel: (617) 732-6325

Dr. Abraham Morgentaler
Men's Health Boston
One Brookline Place, Ste. 624
Brookline, MA 02445
Tel: (617) 277-5000

Dr. Alex J. Vanni
Lahey Clinic Medical Center
Department of Urology
41 Mall Rd
Burlington, MA 01805
Tel: 781-744-5481
Faz: 781-744-5429

[Skjaldborg]

I got this at a young age too. Get a prescription for pentoxyfylline (trental). It's dirt cheap but shown in studies to be effective in stopping inflammation and preventing scar tissue growth. It also helps with pain, as it did for me in a matter of weeks.

Also, erections and blood flow are good for reducing inflammation. Gentle sexual activity is a good thing. For me, I felt pain when I would first get an erection which would go away in a few minutes.

Good luck,

Skjald

[arnold]

Thank you both for your reply. I shopped a bit for clinics around the Boston area since they are closer to me and coming from a free healthcare system I'm shocked by the price of therapy :400-600$ for a consultation + 650$ for a verapamil injection. Are these price comparable to other clinics elsewhere in the us?

Also, I recently began taking celebrex for my back and it seems to improve slightly the pain from my erections.

[Jonbinspain]

Arnold;

Re taking ALC and l-Arginine, try taking them in powder form. They are both easily dissolvable in water, and far cheaper than buying capsules. Instead of Arginine, you may want to investigate Citrulline Malate.

[Noway]

arnold

There is a peyonies disease specialist in ottawa and london. You might have to wait a bit to initially see the doctor but everyone does thats the way it is my friend i know it sucks. Also pretty much what is mention on this forum the doctor will give you anyway. Like pentox to start or some supplyment. So i would just make an appointment and get on pentox or some supplyments in the mean time. Also how did the urologist diagnose your peyronies disease was it from photos? feeling? or ultrasound usually they do an ultrasound and find plague. Too go to the united states for the doctor for quicker service for him to tell you you have peyronies disease and give you a treatment of pentox and traction then come back in six months is probably what he will do.

On the other note coq10 they recommend 300 mg which is 3 pills for 6 months i believe you can just google these things they have articles on coq10 for peyronies. I buy off Wellness Resources - Highest Quality Nutritional Supplements for Weight, Thyroid, Leptin, Health they tell you how much to take. I usually find out which ones work best for you. You can even check there interactions with other meds too.

[arnold]

Thanks for the helpfull replies. In the end I was prescribed Colcichine by my urologist, I also need to have an MRI and the waiting time is awfull in the public system. Does anybody know a radiology clinic or hospital in Vermont, Maine, New-hampshire or Massachusset that does penis MRI? Seems like it's not something that is common.

[coolguymtl]

Hi Arnold,

Im also from Montreal and have been diagnosed since January of 2013. Its been over a year already and after seeing the urologist he also prescribed me with Colchicine. Three months later, i went for a follow up with no improvements so he doubled my dose. I have to see him again in three months (may 2014)...i have no idea what the next steps will be...

where are you at with the MRI? Did you get it done in Montreal? Have you seen any improvements?

[james1947]

Why MRI? Why not Doppler ultrasound?

James

[james1947]

This topic is locked.
Please continue with specific subjects on the adequate boards

James