Felt I, finally, reached the end....

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AskinForAFriend

A short while ago I posted in another section on multiple treatments, trying to post experiences I have had to give men hope not to give up. I went through 10 Xiaflex shots, which had no impact. Decided excision and grafting was the next logical step in April. Things looked bright for a while after surgery. I was successfully having sex with my wife (first time in over 2 years) and the healing seemed to be going well.

Unfortunately, a month ago, that took a turn. The curve started to appear again and I started noticing my erections were not as rigid as they had been a couple of months after the surgery. I went to the urologist yesterday and it appears that I have more scar tissue from the surgery and my condition is worsening. Needless to say....the best word is "shattered"...Putting so much hope into finding the right thing for me to just get by and then having that hope dashed so quickly.

I have struggled with depression since my teenage years so this didn't help that out much. Further, my urologist explained that I could do Xiaflex again, which I said "no" to since it made no impact before. I can just try to "get by" and try to continue, which I don't think will last long and not sure if I could currently...it has been a while since I've tried out of fear of failure. Or, I could get an implant, which I would be completely onboard with. I am only 42 but I have no pride and what matters most is my wife and giving her all she needs in a loving relationship. The doctor went on to explain I would need to pay out of pocket for the implant because, even with great insurance, insurance companies rarely cover the costs. Depression got worse after that because I know, deep down, there is just no way I can come up with $17K. I suppose I could make reckless financial decisions like refinancing the house and pulling out equity or something equally stupid but I don't see that happening.

So...even though I said and thought I would do everything possible because of how important it is in a relationship, I feel this is the end and there is nothing I can do about it. Feeling like less of a man, feeling like it would not be fair to hold my wife in a relationship where she cannot get all that a woman needs, feeling like things are falling apart and there is nothing I can do about it.

I'm sure a lot of these feelings are because of the depression....I'm sure I will stop feeling sorry for myself eventually...but damn, fellas.....how can we make peace with this? How can we make sense that an insurance company will pay out, multiple times, for crazy expensive injections for the disease but will not touch a procedure that could put an end to it for an individual?

Yesterday, I felt like I would just give it all up. Just say "F~@< it all"...life ain't that F~
Peyronie's Apr 2019 -- small rightward bend, ED -- Jan 2020 severe upward bend, Cialis started May 2020, Xiaflex started Jun 2020 -- little results after 3 rounds, 4th Round Xiaflex Jan 2021 -- began using RestoreX

TallyHacker

sounds like you need the best specialist/surgeon possible

I understand how depressing what you describe could be

12/19-tiny hardness,~dorsal/middle shaft, 1/2 down length). 1/20-erection pain. 3/20-diagnosis by urologist, confirmed Peyronies Disease. 4/20-fracture during intercourse; much worse-plaque along length,>curve. 8/20-stable, 90degrees. Age 60, 22 yrs. married.No ED

LWillisjr

I suggest you send a Private Message to member 'Stabler'. She has some experience dealing with medical insurance. She might know what it takes in order to get them to cover an implant.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Hawk

AskinForAFriend,

Don't give up. I have been there.  At times I told my wife, "I wanted to chop my penis off, mail it to a specialist and say 'if you can't do anything to fix this just toss it in the trash' ".

Talk to stabler as LWillis suggested.  Contact a few surgeons to see if they can make your insurance work.  They have an incentive to help you work through insurance issues. It might take an appeal, but if that works, it is an effort well spent.

Consider if you have other insurance options.  Ask a great surgeon if any of those insurance options work better and make the change.

I know Medicare is likely a long way off (unless you are disabled), but Medicare routinely pays for implant surgery.  Along with any supplemental insurance, it would likely pay for every dime other than your travel expense.

In the meantime, continue to try alternative treatments like traction etc, AND ABOVE ALL ELSE, use this time to build even more intimacy with your wife as you work through creative ways to enjoy time together.  It can add a level of intimacy you have never experienced.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

TallyHacker

As Hawk said - and this is based on more than two years of lack of ability to have normal intercourse - the intimacy can be even better.

My wife keeps reassuring that it has been so.

I hope that this - and their suggestions - help
12/19-tiny hardness,~dorsal/middle shaft, 1/2 down length). 1/20-erection pain. 3/20-diagnosis by urologist, confirmed Peyronies Disease. 4/20-fracture during intercourse; much worse-plaque along length,>curve. 8/20-stable, 90degrees. Age 60, 22 yrs. married.No ED

AskinForAFriend

Thanks for your input, everybody. Obviously, when I posted this, I was not in a very good frame of mind. Medication is helping me out with that and I feel better about the whole situation than before.

So many points and good advice. I think I need to switch doctors and find one that is more able to help me out. My doctor office is simply saying "Insurance rarely covers it" and that just isn't good enough for me. Tell me to reach out to the insurance company, which I did, insurance company tells me to reach out to doctor office and I'm tired of the back and forth. However, I was talking to a co-worker earlier today and venting about how great our insurance is, yet, cannot get authorized for a procedure. I, obviously, left out details but she encouraged me to reach out to our benefits manager at work. Apparently, our plan is "self-funded" and the insurance company is just there to pay out the money. I have no idea how all that works but, from what the co-worker said, if the benefits manager insists the insurance pays, then the insurance pays. Might be a route worth taking but still not sure of the doctor...I have seen two in Portland, OR and both have had their downsides.

Yeah, I am a ways off from Medicare but thought that too!! I only have 20+ years to "live" with what I have. You are so right Hawk....I am, indeed, using this time to grow closer with my wife. For the past 2.5 years, we have been completely unable to have sex (except for 2 times after excision and grafting) and...unfortunately....we grew apart a lot. I take a lot of the blame because I felt shame, even though I didn't do anything to get here, embarrassment, and deep depression that we, literally, had no intimacy...a hug or a quick kiss...that was it....and it hurts now. We have a long way to go to get back but I am excited about it because it's almost like dating again. Taking our time to know each other again and let the intimacy grow naturally.

As for the disease....I have to admit....I am shocked at what is happening right now. My last post my penis/erections were in bad shape. Not as bad as before surgery, but still bad. I made a commitment to use my RestoreX every day, starting a week ago, and I already can see a dramatic improvement. The graft/lump is getting smaller and erections are much better. I know this is something I should have been doing all along since the surgery but...life gets in the way when I don't want my wife or 13-year-old step-child to see. Thankfully, I am finding time to myself to be able to get it done consistently and it does seem to be helping.

I am so grateful for this forum and the folks here that give their time to help others out. Thank you all.
Peyronie's Apr 2019 -- small rightward bend, ED -- Jan 2020 severe upward bend, Cialis started May 2020, Xiaflex started Jun 2020 -- little results after 3 rounds, 4th Round Xiaflex Jan 2021 -- began using RestoreX

Stepone

Thanks for your post. It is great that you have shared as others can learn from your frustration including your highs and lows.
I am hoping the insurance comes through for you.
If intercourse can't happen, don't forget all the other great things you can do to satisfy your partner. Ask her what she wants and say you are eager to please.
Big hugs
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC