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[bigfish]

Hello:
I am a 62 year old married male recently diagnosed with peyronies disease. My erectile pain started about four months ago and continued for several weeks. During a visit to my primary care physician I mentioned the discomfort and he did not persue it. It began to subside but I noticed a stricture on erection about mid shaft. I made a appointment with a local urologist and after discussing my history and an examination I was diagnosed. We talked about the options and decided on Vit E 400 IU daily and a follow up visit in six months. The pain is significantly less now but the "hour glass" band seems to be more pronounced and it appears there is a beginning bend to the left. I am understandably concerned. Mentally at this point I am OK and and have a strong relationship with an understating wife. I live in Maine and would like a second opinion from an MD who specializes in Peyronies Disease, I am only four hours from Boston and referrals would be appreciated. Any thought or comment are also welcomed.
Regards
BF

[Jonbinspain]

You will find a list of recommended Urologists in your area on this site.

Your symptoms sound like classic onset of Peyronie's. I'm sure your local Uro is well meaning, but he clearly knows very little about treating this disease. Vitamin E won't do you much harm, but it's highly unlikely to help your Peyronies either.

Read all you can here. Assuming that you have no relevant health problems,  You should start by considering starting to take ALC, L- Arginine, low dose Cialis. Maintaining good blood flow to the penis is essential. I would also recommend that you read up on Pentox. Your new Urologist should prescribe it for you. Good luck.

[IhatePD]

Bigfish do not wait and get to another urologist who is up to date on Peyronies Disease. Jonbinspain is right. You need to see a recommended urologist from this site ASAP!

He should at least out you on Pentox - 3 x 400mg daily, daily Cialis, L-Arginine 2-3 x 1000 mg daily and traction 2-3 hrs. per day (per Obsie and YYY I am using a vacuum traction device - search for Vac3 Extension device). I also take Acetyl L Carnatine 3 x 1000 mg daily.

Many otherwise very good urologists know very little about Peyronies Disease. The clear sign is telling you that you should take vitamin E daily and see them in 6 months to see if it improves. Waiting is very bad. Get to a urologist who is up to date now.

[james1947]

I don't have what to add to Jonbinspain and IhatePD posts, it is very important to see a Peyronies specialist as soon as you can.
You may find one close to you at:
https://www.peyroniesforum.net/index.php/board,37.0.html

Welcome to the forum
James

[bigfish]

Thank you for your comments. I have made an appointmet with Dr. Alex Vanni MD at the Lahey Clinic in Boston. I found his name on another Peyronies Disease site, he is listed as a Peyronies Disease specialist. Is anyone familiar with Dr. Vanni?
Thanks
BF

[bigfish]

I posted here recently diagnosed with Peyronies Disease. My urologist prescribed Vit E 400 U daily and asked me to return in six months. A member from this site recommended that I find a urologist who is experienced in the treatment of Peyronies Disease. After some searching I made an appointment with  Dr. Alex Vanni at the Lahey Clinic in Burlington Mass. My first visit was today. I explained to him that my first symptoms (pain on erection) occurred in February. The pain is gone but I  have developed the "hour glass" shape without any bend.
He preformed an exam and said he was not in favor of verapamil injections in my case and ruled out surgery at this time. He prescribed Pentox 400mg 3 times a day, colchicine 0.6mg daily and arginine 1000mg twice daily for three months with a follow up visit at that time.

[james1947]

bigfish

Happy you found a Peyronies expert that is updted with the possible treatments
Can you give us some more details regarding Dr. Alex? (like phone, address etc')
Good luck

James

[bigfish]

Hello James:
There is a site called Association of Peyronie Disease Advocates (Peyronies | Peyronie's Syndrome Disease Cure, Treatment, Surgery | ADPA) it has a physician finder that is grouped by states. I am from Maine and there were no physicians listed in my state so I choose Massachusetts. There were about a half dozen providers listed. So I randomly picked the Lahey Clinic which had two peyronie experts on staff and I went with Dr Vanni. I was able to get an appointment within a little over a week. Here is his contact info:
Dr. Alex J. Vanni
Lahey Clinic Medical Center
Department of Urology
41 Mall Rd
Burlington, MA 01805
Tel: 781-744-5481
Fax: 781-744-5429
Please let me know if you have anymore questions.
Regards
BF

[james1947]

Bigfish

Thanks for the update, I have updated the urologists list.

James

[bigfish]

It has been awhile since I gave an update so here goes. About 9 months from injury and about 7 months from the start of treatment.
I have an hour glass shape more on the left
Here is my regimen

Pentox 400mg three a day
Arginine 1000mg twice a day
Co Enzyme Q 1 cap twice a day
Colchicine 0.6mg twice a day
Enzymes 1 tab three times a day
Vitamin D 4000 units daily
Multivitamin daily

Single chamber VED 15 minutes before bedtime
Results:
Everything still "works" the disease does not seem to have progressed although I still have some pain.
Thoughts:
Find a good doc
Be vigalant about taking your drugs compliance is the key
VED a must
Questions:
Is pain a sign of active disease?
How long should I take Pentox?
Lastly thanks to all this is a great forum you have helped me greatly.
Regards
Bigfish

[bigfish]

It has been almost a year since I first discovered that I have Peyronies Disease with about nine months of treatment. I have an hour glass shape with a slight bend to the left. My regimen is:
Pentox 400mg three times a day
Arginine 1000mg twice a day
Co-Enzyme Q once daily
Enzymes three times a day
Propolis one capsue daily (new in the last three months) does not seem to have helped
Multivitamin daily
Vitamin D 2000 units daily
Colchicine 0.6mg twice daily (stopped four weeks ago)
VED 15 minutes before bedtime
Progress Report.
I am still able to have intercourse but the erections are not as firm nor do they last as long. I seem to have more pain when erect and during the day. I have lost some length and thickness. Overall not a good response. I am very careful not to overinflate using the VED but how can I tell if it is helping or hurting? If I have pain during erections should abstain? How long should I continue using the medications? If I lose the ability to get an erections will they ever return?
Any suggestions are appreciated.
Regards
Bigfish

[Knight]

I guess the only way you would be able to tell if the VED is adding to your pain would be to take a break and see if you notice any improvement. I too have pain that seems to be generated from erections whether achieved naturally or with the VED. In my case the VED seems to cause much more irritation and pain than natural erections so for now I have stopped using the VED. It seems to getting better, but very slowly....

Whatever you decide to try...please let us know how it works out.

Good luck!