Intro and looking for a good doctor (Utah)

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Swimgert

Hi to all in this forum.

I am 52
What did your medical doctor conclude? I was recently diagnosed with Peyronies. I felt like the urologist didn't know too much about the disease and told me to have a wait and see attitude. I am not happy with that.

How long have you had symptoms? Approximately 4 months

What are your symptoms? First painful erection. No I have about a 20 degree upward bend and what feels like beads in the shaft of my penis

What treatments have you tried and what were the results? Haven't really tried anything other than massage and oils. Doctors wants to wait and see. I'm getting a second opinion.

Do you have insurance or means to get medical treatment? Yes.. have great insurance

where are you in dealing with the psychological aspects of Peyronies Disease? See a counselor....

Are you in a relationship? Married and she knows.

I am looking for a recommendation for a good urologist in Utah.  
Dennis
53
Peyronies Disease started in October 2017
Use Pentoxifylline - headaches and increased ED
Daily stretching and molding exercises
Use castor oil, vit e, and scare tissue oil - topical

TonySa

You're right on track, get to a peyronies specialist ASAP!
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

betterbend

Yes definitely see a urologist who is a Peyronies specialist.  I am no expert, but from what I learned, outcomes are better when you see a Peyronies Doctor in the first year (active phase). I believe the statistics are that 50% of men in the active phase will get worse, 40% will not change & a lucky 10% will resolve and get better.  By waiting you banking on a 1 in 10 chance to improve... A Peyronies doctor can start treatments like verapamil injections reduce your chances of worsening from 50% to something like 15%, and can improve the curve an reduce pain.   Once stable there is Xiaflex, if your curve is greater than 30%, but that isn't used if your plaque calcified.  You want to have a doctor who is experienced with Xiaflex, as it is tricky to work with. You may have to fight with your insurance to get coverage.  Your options are greater if you don't have a calcified plaque, which happens as the plaque ages.

There are oral meds that might help, doctors differ on their effectiveness.  Drugs like Pentoxifylline, Co q10, and others.  traction is another tool available.  

I am not advocating any particular treatment, just letting you know that there are things to start with that can help to lessen the impact of this condition, and possibly improve it.  You should find a doc who will work with you, ultimately with this condition it falls on the you, the patient, to advocate for yourself.   Good Luck....
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

BlueRobot

I have two doctors for you depending on your insurance network

Dr James Hotaling with the U of U
https://healthcare.utah.edu/fad/mddetail.php?physicianID=u0908993

Dr Steven Lynch with Intermountain
https://intermountainhealthcare.org/find-a-doctor/l/lynch-steven-c/

I do believe Hotaling is more specialized with these men's health conditions but I see Lynch because he is in network for me. He has been very understanding and professional. I will actually be having surgery in a few weeks to correct my congenital curvature.

Please feel free to message me directly if you have any additional questions.  

JohnWright

Hey InvisibleHand -- You're probably already thinking this way, but just in case let me encourage you:

- Take pictures of the before -- and after. Erect views of side and top.
- Take measurements of your girth (at the base of the shaft and just before the glans) both before and after surgery (post-healing)
- Consider keeping a diary of your surgery recovery to share here on the Forum for other men to learn from.

What technique have you and the surgeon been discussing?
What degree of congenital curve do you have?



 

TonySa

Maybe also a girth measurement at widest and narrowest points on shaft re hourglassing?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

BlueRobot

We discussed traction but he didn't feel there was evidence to show it would be effective for congenital curvature. He said the only other/real treatment is surgery. So that is what we opted for. My curve is about 45 degrees down with 10 degrees left and maybe a 20 degree rotation. We are doing a simple plication with permanent sutures and no tissue exciesment or tunica lancing. He feels the permanent sutures are the best way to prevent recourance of curvature and exciesment or lancing has a slight increased risk of ED and isn't really need to correct my curvature.

So here's to looking forward to March 7th.  

TonySa

Sounds like a plan, just be aware that length will be reduced to your shortest side of the bend.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

BlueRobot

Yeah, I do expect some shortening but I don't think it will be much. Also, most men with congenital have length to spare. I'm a stitch over 7" so some shortening isn't a big deal for me. I plan to do a postop recovery thread to document it all.  

TonySa

PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.