Waste of time

[DunellenGuy]

Well, after I wrote my note "Why bother," I accepted the encouragement of many here to go see a urologist. Of course it's a hassle finding who is covered by my insurance, etc. but I finally got an appointment and saw the doctor today.

What a huge waste of time!

Essentially, the doctor said that the only effective treatment is surgery (for which he sends patients to Virginia from New Jersey), and that he only recommends that if you have significant pain or are unable to participate in sexual activity.

I asked him about a number of the other treatments frequently discussed on this board:

Verapamil - Unproven, expensive
VED - Hadn't heard of that, but it sounded harmless if I want to try
Pentox - He actually looked it up on the internet while I sat in his office. Hadn't heard of it before for Peyronies.
Xiaflex - Hadn't heard of it although it may be interesting if approved

On physical exam, he wasn't able to feel any plaque. I can't either, so it was good to confirm that the doctor couldn't either.

Ultimately, he encouraged me to come in and meet the rep from the company that they use for VEDs to see what they offer and whether it might be covered by insurance.

Meanwhile, it was just weird to see him sitting there playing with this transparent plastic penis while explaining the mechanism of the disease to me!  

My wife is supportive of whatever I want to do. I measured and have about a 35 degree bend to the left. Discomfort, but no pain. At least a year since I first noticed a problem.

I'm frustrated. Upset that I seemed to know more than the doctor. And wondering what in the world my next step should be.

[phatcat]

I just went to see a uro a few days ago.  He didn't mention pentox but did know about the xiaflex trials.

Anyway i wanted to know if your doctor was open to prescribing pentox to you?

I'd like to get some myself but forgot to ask my doctor wont be able to see him for three weeks and i'm unsure if he'll give me the prescription.

[DunellenGuy]

No. He wasn't willing to do anything except wait and see, and it's ok if I use VED.

[skunkworks]

Find a new urologist.

[LWillisjr]

I know it seems tough. You get up enough courage to see a doctor and expect well....... HELP. And you get the wait and see or even the "there is nothing you can do speech" upsets me. I had it from my first doctor and feel for those who also encounter this. Your whole mindset will change if you can find a doctor who knows what they are doing and will work with you.

[DunellenGuy]

The question is how to find such a doctor. I can't afford to just go down the list of urologists who are in my insurance plan. At $50 a visit, that would add up fast - not to mention the time it would take.

Is there any society or organization that doctors belong to if they have a special interest in Peyronies?

[Hawk]

The answer, there are no medical credentials or medically recognized organization or certification .  Over the years many doctors have come to the attention of patients and other doctors in a more informal manner.  We have a list we are working on expanding at this time.

If you will give m an approximate area such as state or large city I will check and see the closest doctor that we know of near you.  You can post or send me a pm if you wish that information to be private

[ashtown]

The question is how to find such a doctor. I can't afford to just go down the list of urologists who are in my insurance plan. At $50 a visit, that would add up fast - not to mention the time it would take.

Is there any society or organization that doctors belong to if they have a special interest in Peyronies?

Does it only cost $50 for an appointment in the US? It costs me more like $300 in the UK and only lasts about 15 minutes.  

[MattFoley]

I think the $50 mentioned is a co-payment for a specialist. Normally a urologist in a cash-pay situation would be around the $300 fee.

[George999]

DunellenGuy,  I really don't think the uro you saw was such a bad guy.  He is not up on the latest treatments like Pentox and CoQ10, but that is often the case.  Otherwise he seemed pretty OK from your description.  The plastic penis may seem boring to you because you have spent so much time around here, but there is no way your uro could comprehend that.  So ... at this point you need to do some basic research.  The best, by far, Peyronie's doc in your area is Levine in Chicago (as I recall).  If I were you, I would give his office a call and see if he can accept your insurance.  Thats step 1.  No commitment on your part to go to Chicago, but at least you can rule it in or out as an option with one phone call.  Airfair between NY/NJ and Chicago can't be all that expensive.  If it is a possible option, you need to go back to your uro and ask him if he would prescribe you Pentox IF it were recommended to do so by a recognized Peyronie's expert.  I would ESPECIALLY recommend that this time you take ALL of the Pentox documentation with you this time.  That means all the Lue papers and the full Iranian Pentox study.  These are available from this website.  Your uro needs to have this information in order to make a professional decision.  The status of Pentox for Peyronie's is off label.  That means NO doctor will prescribe it to you without some pretty convincing documentation.  Then, based on his response, you can ask him if he would be willing to give you a referral to Dr Levine.  If you eventually see Dr Levine, he will be able to give you some definitive answers and some viable options for treatment.  Not every patient likes him, but he knows his stuff and is the best expert in your general neighborhood.  The other option would be Dr Lue in San Francisco, but that would cost you a bit more for airfaire.  The strategy is to see them for ONE visit and work from there with your local uro  based on their recommendations.  - George

[MattFoley]

Amen to everything George just said.

It's bad enough that we have this disgusting disorder but the ignorance of the urological community is astounding when looking at treatment options for Peyronie's. Far too many of these doctors think that nothing can be done except for surgery. Well, members of this forum know that this is not true and it's a shame that these doctors don't know that.

Having documentation with you is key but it's also important to have a urologist who is open to various ideas put forward by true experts in the field. It's also important to remain tenacious when dealing with this disorder and the medical community to insure that you make progress. Don't give up ... ever.