A bend in the road in LA

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dru92646

Diagnosed three months ago and had my first Xiaflex treatment three weeks ago. 75 degree upward bend occurred over a 6 month time frame.I can't attribute it to any specific act. 66 years old in otherwise excellent health. I was amazed to find so few urologists treat this disease and am traveling 50 miles one way for treatment in Los Angeles!!! That drive alone is enough to really aggravate you as if the Peyronie's' isn't enough already. The first day of injections was tolerable but the injections 48 hours later were a little tough when you are bruised and swollen.Doing all the medications and the stretching religiously.No improvement yet. Intercourse has been almost impossible with my degree of curvature. Urologist has given me a guarded prognosis of 30-50% improvement.Always had a great sexual life but starting to worry that I will be very limited in my ability to satisfy my partner in the future.I don't view this as the end of the world but rather as a major roadblock to sexual satisfaction for both of us.This seems to be the best most informative forum out there.Good luck to all my fellow sufferers.

Bueller

Hi I love in LA too. I'm looking for recommendations for Doctors. I have similar symptoms as you only I'm 29. I new to the forum too your post just caught my since you said you live in LA. I would appreciate any advice you could give.
32 yrs old had slight left bend starting at 29. Started Pentox and cialsis 2 years later developed multiple plaques on both sides one on top. Lost 1 inch of length and girth after multiple plaques became present. Now pentox 1x a day and 2.5 of ciali

dru92646

Hi,
The advice I would give you will depend somewhat on your insurance coverage . Im covered by Kaiser Southern California.I am told for example that Xiaflex is expensive if you have to pay out of pocket.They cover my treatment with a 20 dollar copay for each visit.What I found is that they were referring most cases to a Urologist in the Sunset Boulevard facility.Her resume did not mention anything about Peyronies treatment but the original Urologist I had seen told me she was treating this disease.She is excellent with good patient communication. I was shocked that so few of their many urologists were treating patients with this disease.The initial treatments don't require great technical skills so I found it very puzzling that so few of them were well versed in the treatment regimens.My research of local urologists also yielded A doctor at the University of California at Irvine Medical Center who listed Peyronies as an area of interest and treatment.My specialist also recommended an out of network urologist in the Burbank area if I felt I wanted to go outside the Kaiser network. Remember you can request to leave your network if your medical provider lacks someone of adequate skill and knowledge to treat your problem.I also was considering flying out to Baylor University where there are two urologists who specialize and do research on Peyronie's.I have a severe bend so according to my urologist my case is considered very difficult with a limited prognosis.Keep reading through this website and you will see some of the newer research treatment modalities being looked at.This site is the only place where you can get good info and feedback.I have spent hundreds of hours reading through the different websites and as many research articles as I could find to get adequate knowledge for choosing my treatment.Let me know if you need any help at all because I know how difficult it can be to get good information and find the right urologist for your treatment.

evankol1

Just got on the site and wanted to wish you luck dru!

don612

I too am with Kasier.  My first Kasier doc in Mission Viejo would not treat with Xiaflex or anything else and suggested I just wait a year and see where things end up.  I pushed him a little (through an email) and I was referred to RAUL ORDORICA M.D. at the Riverside KP Facility.  I met with him and he will admisister Xiaflex.  I have not followed up because I am really not close to the required 30 degrees but its good to know I can get it if needed.

dru92646

Thanks for the support!!!! I am seeing Kaiser urologist Polina Reyblat M.D. at the Sunset and Vermont  facility.If you have not already done so you can check your urologists background and training on the KP website.Most urologists I spoke with prefer the plaques to be 9-12 months
old prior to treatment.I started the manipulation exercises  once diagnosed.When you go for the initial consult I would ask about the number of cases your urologist has treated and outcomes. I would also listen and see what they recommend in preparation prior to Xiaflex treatment to diagnose the size and position of the plaque(s).With only a 30 degree curvature you are likely to get a good outcome.Do not have agreesive sex at this time!

Bueller

I have medical health net. I saw a primary care doctor at the beginning of the week they just wrote down my symptoms and took a urine sample and are going to refer me to a urologist. My penis is kind of sore and seems to bend more every couple of days. There's no way I could have a broken penis right? It would hurt a lot and be swollen? I get random erections every night but because of the bend they sometimes hurt. On my own I just bought a traction device and am trying cryo therapy and taking every over the counter supplement I read about on here. But I'm starting to get a little worried and just wanted to see what someone else thought. There's no way with these symptoms and erections for at least a week and little to no soreness that I could have a broken penis?
32 yrs old had slight left bend starting at 29. Started Pentox and cialsis 2 years later developed multiple plaques on both sides one on top. Lost 1 inch of length and girth after multiple plaques became present. Now pentox 1x a day and 2.5 of ciali

dru92646

Penile fracture can occur. Only your urologist will be able to determine if you have had this occur or you have peyronies.Tests may involve determining testosterone levels,manual examination with and without an erection,some urologists also require a sonogram to determine if plagues are present and where they are..In any case you need to be more cautious about any aggressive sexual activity at this time and maybe for a long time.Discomfort with an erection and particularly during  penetration are common with peyronie's.I hope everything works out for you and due your best to find a urologist in your network that has expertise in this disease.