The Waiting and the Unknown

[Tristan74]

Hello all,
Thanks to everyone so far who has replied in some form or another to my posts. I wanted to express/vent a couple of things I am feeling right now.

My initial intro post mentioned that I have a couple of appointments with my urologist this week. Well, I just learned that the in-person appointment will need to be pushed to next week instead, so that is another few days without ultrasound/bloodwork. Hopefully I will be able to convince doctor of urgency via video appointment.
While it's definitely understandable that doctors and medical offices are having a tough go of it right now and I don't begrudge them in the least, I couldn't help feeling a renewed sense of urgency and anxiety.

For those that don't know, I just noticed my Peyronie's symptoms about a month ago, with the symptoms worsening to curvature last week. As of now it definitely seems like the plaque has gotten bigger since then, so there's that.  

Based on everything I've read, it seems like the earlier this is located, diagnosed, and treated, the better. And while this site has been extraordinarily helpful (got my arginine/citrulline in the mail, have started taking it for the past couple of days, though still obviously too early to tell), there is always the anxious mental feeling that one should be doing "more", whatever that means. Have also tried doing some hand traction as per NeoV's videos. It seems to help (at least psychologically). But I still don't know for sure if it is helping or making things worse, especially because I am an amateur without a machine.

I guess I am just waiting for the other shoe to drop. I can see with my eyes that there is a lot of plaque on the shaft, so I guess I am only worried about whether it is acute, chronic, or calcified. Now I have had the plaque on my left side for quite a while without issues, but if it has been there that long I realize there is a chance it could be calcified. Based on the timeline it doesn't seem like the right side has had time to calcify, but it is big and has popped up seemingly overnight and is pretty much the definition of uncomfortable...
At least if I had that appointment for tomorrow I would know sooner. That's the rub for me, I guess. I am simultaneously afraid of hearing the truth yet impatient to know what exactly the extent of my affliction is. Getting Pentox, tadalafil, etc (can't do without prescription).

Basically, feeling like a lot of things are out of my control right now, I guess. Feels like all I can do is take my arginine and do my clumsy traction and pray.

Logically, I know that there are some things that are out of my control, but emotionally, it sucks. And I realize that I'm definitely very early in the process, so hopefully this isn't a sign of things to come.
Thanks for listening to you all, wishing all of you well.

[RandyPE]

Hey Tristan - that is super frustrating, man.  When you've already waited this long and then having to wait even longer.

I echo what the guys said in your Intro post - getting on daily Cialis will help, and I'd go ahead and continue the stretches that you've seen on NeoV's videos and other places. Those things will help if it IS Peyronie's and they won't hurt if it ISN'T.

I wonder if you call the Uro's office back and let them know that while you understand the postponement of the appt is unavoidable, you'd like the doctor to call you in an RX for the Cialis that you can start taking right away, even before the appt.  That seems reasonable to me.

Side note - my insurance is also terrible and doesn't cover hardly anything related to men's sexual health. My Uro gave me the RX for daily Cialis and my insurance will only give me 6 pills at a time, and it's $15.00 for the six pills.  I use the pharmacy at Sam's Club, and their price on a full 30 pills of 5 mg Cialis is only $14.99, so I went back yesterday and had them bill me cash rate and not even bother with UHC.  So that may be a good option if your Kaiser is that bad.

[BrettC]

Unfortunately in the medical world delays are bound to happen, and certainly right now with the COVID situation things have hit a new crawl.  Be patient.  

Although jumping on this ASAP is best, it can wait a week or a month.  You do what you can in the meantime.

And yes, insurance is frustrating no matter what condition you have.  So no worries there!  

Just hang in there, and know that you are in good hands.  There are treatments, there are solutions, and they will always be there.  

[Tristan74]

Thanks to Randy and Brett for the kind words. Yes, I definitely want to keep things in perspective and mean no disrespect to the doctors at this time. Although I've had some unpleasant dealings with my insurance and provider in the past, in all fairness I know that they have a lot on their plate right now with COVID and all that crap.

I do think knowledge, for better or worse, has been a big part of my psychological health right now. Whether it is pleasant or unpleasant knowledge, I feel like I need to know as much as I can; knowledge is power, knowledge is action, and knowledge psychologically helps me feel less helpless. And while I realize that can definitely be unhealthy when taken to extremes (which I guess is also kind of the reason why I want to put this in public, to keep myself accountable), I guess it is a defense mechanism for me.

[Tristan74]

Update: Finished a call with the urologist just now.
Although I was hopeful going in, it ended up being mostly "wait and see" style comments, even though it was acknowledged that based on the symptoms I described it's probably definitely Peyronie's.
When I asked for a ultrasound, was told that I "probably wouldn't need one".
Discussion of pentox and tadalafil were quickly brushed aside despite my best efforts.
I do have a follow up appointment in the next couple of days but I'm not feeling enthusiastic.
Trying to find other doctors now, but without insurance I'm scared of how big a hit it's going to be.
Just me and my arginine and hand traction for now I guess.

Sigh.

[RandyPE]

Yeah, sorry Tristan.  That sucks to get some hopes up and then.... nada.

I'd say it's definitely time for a second opinion.  It doesn't sound like Peyronie's is a big part of this guy's practice or at least experience.  Not fun to have brushed aside any kind of hope for a better outcome.  

Keep up with the 2 options that no one can take away from you, and we'll hope some other options come around soon.  Look into a pump and / or traction device. Those will help supplement what your hand can't do or tires from doing.

I gotta add - my right hand has been my best friend for the majority of my life

[peter123]

Update: Finished a call with the urologist just now.
Although I was hopeful going in, it ended up being mostly "wait and see" style comments, even though it was acknowledged that based on the symptoms I described it's probably definitely Peyronie's.
When I asked for a ultrasound, was told that I "probably wouldn't need one".
Discussion of pentox and tadalafil were quickly brushed aside despite my best efforts.
I do have a follow up appointment in the next couple of days but I'm not feeling enthusiastic.
Trying to find other doctors now, but without insurance I'm scared of how big a hit it's going to be.
Just me and my arginine and hand traction for now I guess.

Sigh.

my greatest wish in life right now is these "urologists" getting the most severe peyronies recorded in history themselves. maybe that would make them aware of the suffering and treat this actually seriously and not say stupid crap like

"we just wait and see" or "this is not recommended based on our dumb definition of clinical evidence even though there are case reports and we could at least try it out. trying things out that are not RCT tested is wrong"


this should honestly be considered criminal behavior.

[Tristan74]

Update: was able to find another doctor and have appointment with him next week. Wallet will admittedly take a hit since this won't be covered by insurance. But at this stage I'd rather regret paying more than finding out later there was something I could have done.

[RandyPE]

That is awesome!  I hope this one gives you some good advice and hope.

[TonySa]

Tristan be sure to read the survival guide before you see the new doc to make the most of your visit:  https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057