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RP and Nerve Removal
Posted: Wed Aug 09, 2023 2:03 pm
by equusAz
Well, I never thought I'd be in this place in my life. My entire life I've had healthy erections up until about a year ago. Started having very minor ED and got some cialis. All was fine until my PSA's jumped to 10. Long story short, due to my relatively young age (47), I went with RP. Last thing I need is to undergo a RP after radiation, or to possibly get other cancers due to radiation.
While 'in there' the urologist removed one of the nerves due to possible incursion. There wasn't any but its better to be safe than sorry and the good news is - looks like everything is out - Prostate removed with no spread beyond, not even in the lymph nodes.
So I'm dealing with the slowly worsening depression. I am happily married (to a man) and we had lot of discussions prior to and post surgery about ramifications. However...I've had zero erections since the surgery. Not even morning wood. I was warned this was a possibility, and even with one nerve removed I only stand about a 40% chance of getting any kind of erection back, but...being warned and facing reality are two different things.
This absolutely sucks. I still have sexual urges and needs, but...I don't have a physical response. I'm abit nervous to try to reach orgasm yet. Also...and this may seem to be a bit personal, but I was not 'averaged' sized. Well above average really (7.5x6.25 non-bone pressed). And well, I can definitely tell I've lost length - which is a bit of a kick in the teeth too.
I don't know just felt like venting here is all. I certainly didn't ask for this in life and I get it life can throw you curveballs, but man. This sucks.
Re: RP and Nerve Removal
Posted: Wed Aug 09, 2023 3:39 pm
by CuzznClark
I went thru the RP 2.5 years ago at age 63. Pills worked before surgery but needed Trimix injections after surgery.
One tip on avoiding length loss; about 6 months after surgery started using a VED and now 2 years later I have 90+% of my length and girth back (wish I would have started the VED at month 2 or 3 instead of 6 months post surgery). So I have now begun chapter 2 called salvage therapy, and have been on ADT for 2months and will begin 38 radiation treatments next week. I am fortunate to be with the supportive woman of my dreams after 42 years of marriage. It's difficult not to get down when ED worsens after RP - however open discussions with my supportive wife have been key for me. I have also had an initial consult with an implanter and have discussed the same with my wife as a next step. Please know that despite the post-surgery recovery disappointment - that you do have options to get closer, or 90+% of the the way back to where you want to be
Re: RP and Nerve Removal
Posted: Wed Aug 09, 2023 4:32 pm
by silver daddy 1960
Hi equusAz,
Your story is so much like mine, even size, but I was 52. My Dr had told me I had a 70% chance of recovery of function but a year and a half later still nothing. Then years of depression and anger until I found this wonderful website and all these great men to help!
First things first, make sure you use the VED to reduce possible additional length loss. Have you tried injections? I found trimix worked but hurt like hell, then did bimix to great results. That finally wore off so I went for the implant and man the best thing i could have done for myself!!
I did masturbate to a floppy success i guess a couple weeks out at the urging of the Dr. It works just a bit more difficult to get over the top.
PM me if you have questions or want to vent I was there. But I am like other post implant guys, "why did I wait so long to do it?" Glad you found FrankTalk!!
Re: RP and Nerve Removal
Posted: Wed Aug 09, 2023 10:26 pm
by bldoink
Welcome to the forum.
Re: RP and Nerve Removal
Posted: Thu Aug 10, 2023 7:33 am
by ftwabeck3533
equusAz wrote:Well, I never thought I'd be in this place in my life. My entire life I've had healthy erections up until about a year ago. Started having very minor ED and got some cialis. All was fine until my PSA's jumped to 10. Long story short, due to my relatively young age (47), I went with RP.
Here are the two websites/forums which I was very active on in the months after my PCa diagnosis, as well as post prostatectomy:
-
https://healthunlocked.com/ Several good communities...
.... Active Surveillance - Prostate Cancer
.... Advanced Prostate Cancer
.... Erectile Dysfunction Support
.... and more.
-
https://www.inspire.com/.... I am subscribed to the "Prostate Cancer" community
I am much more active on FrankTalk.org these days (it's pretty focused on my big challenge, ED).
I've made "friends" on both HealthUnlocked and Inspire. I'm of the opinion the "guys" on these two forums are quite empathetic and knowledgeable on the subject of prostate cancer.
I challenge you to reach out to the members -- pretty sure you'll hear back from a few who are "in your shoes" and will share their experiences.
Re: RP and Nerve Removal
Posted: Thu Aug 10, 2023 8:46 am
by equusAz
Hey all -
Thanks for your replies, greatly appreciated. As an FYI my RP was on July 10th - so I'm just 1 month out today. I know (mentally) that I have to give it time, but going through it is a bit different. I think thats the hard part - just reality can be jarring at times no matter how much you think you are prepared.
Re: RP and Nerve Removal
Posted: Fri Aug 11, 2023 1:54 pm
by equusAz
Thanks everyone. Yeah - one day at a time, and I know its early - but man - dealing with it is hard.
Re: RP and Nerve Removal
Posted: Fri Aug 11, 2023 2:17 pm
by bldoink
It is most definitely early. You should just be worried about getting well. That and doing your therapy, to include your kegels and using a VED. At this point the VED is for therapy and not sex although I don't see any reason you couldn't play around if desired.
Good luck.
Re: RP and Nerve Removal
Posted: Wed Aug 16, 2023 2:55 am
by BundyBear
equusAz wrote:Well, I never thought I'd be in this place in my life. My entire life I've had healthy erections up until about a year ago. Started having very minor ED and got some cialis. All was fine until my PSA's jumped to 10. Long story short, due to my relatively young age (47), I went with RP. Last thing I need is to undergo a RP after radiation, or to possibly get other cancers due to radiation.
While 'in there' the urologist removed one of the nerves due to possible incursion. There wasn't any but its better to be safe than sorry and the good news is - looks like everything is out - Prostate removed with no spread beyond, not even in the lymph nodes.
So I'm dealing with the slowly worsening depression. I am happily married (to a man) and we had lot of discussions prior to and post surgery about ramifications. However...I've had zero erections since the surgery. Not even morning wood. I was warned this was a possibility, and even with one nerve removed I only stand about a 40% chance of getting any kind of erection back, but...being warned and facing reality are two different things.
This absolutely sucks. I still have sexual urges and needs, but...I don't have a physical response. I'm abit nervous to try to reach orgasm yet. Also...and this may seem to be a bit personal, but I was not 'averaged' sized. Well above average really (7.5x6.25 non-bone pressed). And well, I can definitely tell I've lost length - which is a bit of a kick in the teeth too.
I don't know just felt like venting here is all. I certainly didn't ask for this in life and I get it life can throw you curveballs, but man. This sucks.
I was diagnosed with grade 4 prostate cancer in January 2023/ I am 60 years old so my urologist recommended I undergo RARP. The surgery went ahead 7th March 2023, but he had to cut into some nerves as the cancer was very close to them. The surgery went well and I mostly have been given the all clear as my PSA is not quite as low as he would like. I to am married to a man. my husband has been a pillar of strength for me. I had full bladder control at the eight week mark. I started using a Vacurect as soon as the catheter was removed 7 days later. I have lost a little bit of length due to the surgery but have not lost any girth, I use the VED device daily to help restore and maintain the length I have got till surgery. I as well have had no erections what so ever since the surgery. They put me on trimix but the dosage was increasing and the mixture felt like a like a kick in the nuts. So after a lot of research and stumbling onto this terrific website I have decided to go bionic, the surgery is schedule for 13 September 2023. When I asked my husband what does he think of me getting an implant he replied "Its your dick" with a smirk on his face.
My approach to life and always has been is this, yep. life likes to throw you curve balls, but don't like back at the past, that is behind you a road already travelled, keep looking forward and keep pushing ahead, where there is a will there is a way.
Re: RP and Nerve Removal
Posted: Sat Aug 19, 2023 9:04 am
by still_crazy
@equusAz:
Welcome to the forum. Sorry to hear that you are now in the same boat as many of us here, but there is hope, and there are ways and solutions. Yes, daily VED exercises are a must. Go easy at first, because you don't want to cause damage where the surgery occurred. After a couple of months you can experiment with using constriction rings with the VED to produce/maintain an erection for up to 30 mins at a time. Then also look at Trimix or straight Alprostadil injections. Sounds frightening, I know, but once you get used to injecting it works great for many of us. Since you've had one nerve bundle spared, it's possible you will get natural erections back in a year or two, but if not, there's the methods mentioned above. Finally, after a few years, if nature doesn't resume its magic, many will choose to get an implant and "go bionic" as they say.
I'm not a medical professional, just relating my experience so far. I had a non-nerve sparing prostatectomy about 8 months ago. So I know exactly where you're at.