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Posted 9/25/2018 6:33 PM (GMT 0)
I am 2 months out from robotic prostate surgery. Aside from the anal pain and the incontinence issue - both are gradually receding and I see the light at the end of the tunnel. But the shrinkage of my penis and loss of libido are greatly affecting my feelings. I was told this was going to happen and I understood it intellectually but only now am feeling emotionally. I am fighting not to get depressed but it is hard. My surgeon dismissed my misgivings saying there are pills for that. That is all well and good except my insurance does not cover anything
Posted 9/25/2018 6:58 PM (GMT 0)
Sandy,

Welcome to the board. It would be helpful if you put a signature on your profile summarizing you diagnosis and treatment. It’s been a long trip for you so far with a lot to take in. While it’s true there will changes in sexual abilities, many men recover very well. Each guy is different but there is plenty of hope things can turn out well. Plenty of members will be along shortly with support and suggestions. This whole thing is a process that takes time. Be patient as there is every reason to believe you can get to where you want to be.
Posted 9/25/2018 6:59 PM (GMT 0)
Sandy,

While it is difficult (sometimes impossible) to get any help from your insurance company, if you know some tricks for comparison shopping you can get what you need for a lot less than you think. Often the cash price is less than the co-pay on your insurance, even if you could get them to cover your erectile dysfunction drugs.

There is a website you can go to that lets you find the lowest cash price for prescription drugs in your area. It's called GoodRx.com. I dunno what you and your doctor think would be the best drug but the least expensive, currently, is sildenafil (the same drug as in Viagra). In my area I can get 30 100mg generic sildenafil pills (the same as 30 high-dose viagra) from a local grocery store chain for less than $16.00. To get that price I have to print out a "coupon" from GoodRx that basically tells the pharmacy that I have found their online price.

If pills turn out not to work for you there are injections. The brand name injections for erectile dysfunction are absurdly expensive but you can get a mix of drugs called "trimix" for somewhere around $5.00 to $10.00 per dose from your local "compounding" pharmacy.

So, don't despair. There's affordable hope out here. You just have to scrounge a bit.
Posted 9/25/2018 7:00 PM (GMT 0)
Sandy, I suggest you find a more empathetic urologist. Your feeling are most understandable and there are PCa nurses, specialists and even physicians that are specifically trained to help you through your challenges and feelings. Pills are a last resort, not an initial one.

From what I've read, I believe penis size and libido come back within a year many times. Good luck and keep us posted.
Posted 9/25/2018 7:02 PM (GMT 0)
Oh, and lest I forget. Welcome to the forum! We're glad you found us. Hope we can help.
Posted 9/25/2018 7:08 PM (GMT 0)
Garyi,

I'm afraid I have to disagree on one point. Pills are not any sort of last resort for penile rehab after radical prostectomy. They help keep the tissues oxygenated while the man waits for his erectile nerves to come back on line. They're probably the first thing the doctor will try.
Posted 9/25/2018 7:32 PM (GMT 0)
Sandy, I can totally relate to where you are coming from. It is really sad that your urologist can not. Some of us never recover, but many of us do(but not me)

You should have been taking some minimal dose of pill from day 1, if you can afford it. Get started immediately again if you have the $. And +1 to what PDA said about comparison shopping. If nothing else, get the low dose Viagra that is used for- I forget, but for some circulatory condition other than ED- it is much cheaper and maybe generic, Sildenafil. Also, check out this link ( allowed? ) at GoodRx for some info on saving $:
/www.goodrx.com/blog/generic-viagra-in-2017-sooner-than-expected/


Get a pump and start using it for rehab, even if you don't want to use it for sex.

Go ahead and ask about those injections. The one big risk for that is Perronie's disease, but even if not used for sex(though many do) the injections will pump some serious blood into your penis, which is good for it's health while you wait to see what kind of recovery you will finally have after a year or two. I was pleasantly surprised to see how much size came back after my first injection. More than I had been able to get with the pump. But after the injection, things were also better with the pump as far as size recovery. YMMV of course!

All of the above will minimize the damage while you wait to see what is going to happen. Especially if you plan to have a sex life later, and especially if you have a partner who would like to have sex with you- then aggressive early rehab is a must.

Last but by no means least: go over to Franktalk.org and read about all of the above in great detail, but especially read about penile implants. There are a significant # of guys over there who claim to have recovered most or even all of their pre surgery size, though not at first. But after some months or a year of aggressive "cycling" of the pump, several(though not all) claim to have recovered a whole lot of what they have lost. I suggest you read their stories!

Good luck, Brother, and "hang" in there!

Post Edited (BillyBob@388) : 9/25/2018 1:36:32 PM (GMT-6)

Posted 9/25/2018 7:58 PM (GMT 0)
Hello Sandy and welcome to HW. Sorry you have to be here but I think you will find this a supportive and helpful group. I really don't have anything to add to the excellent advice you have received so far except to wish you well and encourage you that this is likely light at the end of this tunnel. You have options...

Jim
Posted 9/25/2018 8:03 PM (GMT 0)

PeterDisAbelard. said...
Garyi,

I'm afraid I have to disagree on one point.

Actually we agree, Peter. I am referring to over reliance on the depression pill mill, not erectile rehab oxygenation assistance pills, which after ADT, I'm taking myself, in hopes stiffening up. wink
Posted 9/25/2018 8:17 PM (GMT 0)
Welcome to HW.

PC is as much an emotional game as it is a physical one. Depression is common. ED is common. There are treatments for both.

You've been through a lot and yes, there is a loss from surgery. After 2 months your body is still healing and things can still improve with time. Take some time to deal with the emotions and give your body a few more months to heal.

and appeal the insurance company on ED meds - most will cover at least some post surgery.

We're here most days for support - just drop in with your questions and there are lots of folks here that will help.
Andrew
Posted 9/25/2018 8:30 PM (GMT 0)
Sandy welcome to HW . At least your Dr warned you, mine did not. To this day I am still angry about that. There are many things in rehab to get your boy back in the game.

Depression: yep it is real . We have lost a major part of our being. Call it depression or grief they are the same with this.

If you want to talk a bit shoot me an email , I have it listed in my profile. Best of luck.

I have ideas that I can tell you about that we can’t post here. Once I have your email I can also send you some tips.
Posted 9/25/2018 8:44 PM (GMT 0)
Sandy,
Welcome to HW. Here s the good place to here a lot of good advice. Also, here you will here lots of bias about loss that comes with RP especially robotic. You are not only one who lost length after RP and you won’t be the only one who never recovers a bit from that loss. Some people are praising or better said over-praising their recovery of erectile function with minimal effort but most, most are struggling with it and high number is ending as I did with no recovery at all after aggressive penile rehabilitation. ( read my signature).
It is okay to be optimistic and trying everything possible to speed recovery, or just sitting doing nothing and hoping for wonder which won’t happen. Which ever you prefer.
I wish you good outcome and good recovery.
MK
Posted 9/25/2018 10:06 PM (GMT 0)
Following up on BillyBob@388, on another thread PeterDisAbelard suggested that I shop around for a better price on sildenafil. I was getting it at a compounding pharmacy for $60, 20mg, 30 pills.

Thanks guys. I took your advice, looked at goodRx.com and went over to the grocery store pharmacy that I usually use. There was some kind of issue when I went to them before and they wanted over $400/month which is why I was at the other place.

Today I took my pill bottle in and asked for their price. They said about $20 and they would take care of getting the Rx switched over to them. about 30 minutes later I got a text and picked it up: $25.83. I took the coupon from goodRx.com but they didn't need it. The fine print on the coupon says that the price they show is an estimate, $17.90, so I am happy with the price savings.

Again, thanks guys.
Posted 9/26/2018 12:01 AM (GMT 0)
Thank you all. It is always good to feel you are not alone. I will be meeting with my Urologist soon and speak to him about these issues. I greatly appreciate your input.
Posted 9/26/2018 12:57 AM (GMT 0)

VinceInMT said...
Following up on BillyBob@388, on another thread PeterDisAbelard suggested that I shop around for a better price on sildenafil. I was getting it at a compounding pharmacy for $60, 20mg, 30 pills.

Thanks guys. I took your advice, looked at goodRx.com and went over to the grocery store pharmacy that I usually use. There was some kind of issue when I went to them before and they wanted over $400/month which is why I was at the other place.

Today I took my pill bottle in and asked for their price. They said about $20 and they would take care of getting the Rx switched over to them. about 30 minutes later I got a text and picked it up: $25.83. I took the coupon from goodRx.com but they didn't need it. The fine print on the coupon says that the price they show is an estimate, $17.90, so I am happy with the price savings.

Again, thanks guys.

Now that is the way to do it! yeah
Posted 9/26/2018 3:27 AM (GMT 0)
Since it was the title and the Andrognous name that cauht my eye... gots to reply...
if in fact it was a female... I would not have touched the thread
Ok a short reply...a male rooster does not make a man...ask any
Any woman of worth knows this... I suspect this is true of same sex
relationships as well...but will let that proceed from its own source
fwiw...sorry manhood’s definition is much truer...tho boys will be boys...sic
Posted 9/26/2018 4:00 AM (GMT 0)
Garyi,

Yeah, I had to read twice to be fairly sure his surgeon was talking about ED, not depression, when he said "there are pills for that". I was especially sure when SandyS1 went on to complain how unhelpful his insurance was. Insurance will usually pony up for antidepressants (they cheerfully pay for mine) but getting them to pay for ED drugs is murder.
Posted 9/26/2018 4:28 AM (GMT 0)

PeterDisAbelard said...
Insurance will usually pony up for antidepressants (they cheerfully pay for mine) but getting them to pay for ED drugs is murder.

In my experience the pharmacy staff may treat you bad when you ask for ED drugs, as if you are some sort of pervert.
Posted 9/26/2018 4:30 AM (GMT 0)
My pharmacy mails me my pill, so I don't have to listen to their comments...
Posted 9/26/2018 11:27 AM (GMT 0)

DJBearGuy said...

PeterDisAbelard said...
Insurance will usually pony up for antidepressants (they cheerfully pay for mine) but getting them to pay for ED drugs is murder.

In my experience the pharmacy staff may treat you bad when you ask for ED drugs, as if you are some sort of pervert.


Depends on one's personality, but if that happened I would ask to speak immediately to the store manager. No one should have to put up with being treated that way.

At the same time, we humans do tend to see what we expect to see, so there may need to be a conversation about what actually happened. In any case, such behavior would be extremely unprofessional for a pharmacy staff member.
Posted 9/26/2018 1:20 PM (GMT 0)
It has been my experience that people in the pharmacy are universally kind to me. It's life that is cruel. It's not anyone's fault that every firkin' time I would go to pick up my ED drugs there would be some sort of problem with the price, or the supply, or my insurance coverage, or something that required lots of discussion. It's not anyone's fault that the pharmacy assistant is always a young woman who I suspect may be one of my daughter's friends from school. And it's not her fault that standing behind me in line -- politely a few feet away but not out of range for young ears -- is a mom with a gaggle of teenagers in tow. It's nobody's fault that I feel like that creepy old guy in the bus station -- the one who has his own whole bench -- muttering about his disappointing old-man boner... And, when I finally run the gauntlet of embarrassment and I think my ordeal is over, she asks "Do you have any questions about your medication?" Oh God, no!
Posted 9/26/2018 2:46 PM (GMT 0)
there's one pharmacist I deal with. When I go in the store, I check to see if she's working. If not...I leave and come back when she is. Sometimes I'll just ask when she'll be working again.

This has always been my experience in most areas of my life. Finding those one or two people....

They're there...it's just a matter of where.
Posted 9/26/2018 2:51 PM (GMT 0)

PeterDisAbelard. said...
....It's life that is cruel.....And, when I finally run the gauntlet of embarrassment and I think my ordeal is over, she asks "Do you have any questions about your medication?" Oh God, no!

That was a very funny post, PDA idea

Life can be cruel sometimes, but we need to hang tough, and fight back. cool
Posted 9/26/2018 3:21 PM (GMT 0)
very funny indeed...Pda...hilarious...so early in da mornen(5am hst)...it activated my chronic sciatica...oh well on to the floor for a game of twister...its sokay...its sokay...I enjoy struggle...it takes my mind off...well my struggles...which forsome reason reminds me of a Roy(not Rob) Schneider film...Sheila LaVine is Dead and Living in New York...sic....I have no idea what sic actually means...but that has never stopped me...ya know...its all about da flow and of course...to confuse the muse...sic smile
Posted 9/26/2018 3:22 PM (GMT 0)
Back to the OP.
Again, different guys have different outcomes. My surgeon had to cut so wide I had no nerves left. TriMix injections worked very well, and TriMix is much more economical than ED pills. If you ever go this route be sure to talk to your Uro about Peyronies, which can sometimes happen with TriMix.

If you are depressed, talk to your PCP about antidepressant medication. I think one poster suggested that using depression medication should be a last resort. I don’t think that’s good advice.
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