Hard Flaccid, ED, and Implant at 34

The final frontier. Deciding when, if and how.
MK1965
Posts: 625
Joined: Thu May 24, 2018 5:32 pm

Re: Hard Flaccid, ED, and Implant at 34

Postby MK1965 » Sun Sep 04, 2022 11:51 pm

Dashriprock,
You are young and healthy 34 y/o guy. Implant is irreversible procedure with no way back so it should be really last option after everything else is exhausted. Since you know your pudendal nerve is compressed, IMO, it would be okay to try it decompressed. It might work, it might not, but if it doesn’t work, you know you gave it chance. Other options to consider is to increase PDE5i dosage and try Cialis 20 mg or Sildenafil 100 mg. It might work for couple of years which is buying you some extra time. Also penile injections BIMIX and TRIMIX work for high number of men. That also might extend your natural sex life.
For many of us here, implants were our lost options for ED caused by prostate removal because of cancer and we tried everything available under the sky.
I see many younger implantees here who are complaining about length, girth loss after implant and they are not completely satisfied with the implant.
Nothing can substitute for blood feeled penis.
And you already complaining about loss of feelings and numbness, Another surgical insult can make it even worse.
Don’t get me wrong; I am not against implant, rather I am in favor of it if nothing else works.
MK
IPP 9/5/18; TITAN OTR 18 +1cm RTE,Prostate Ca at 51 y/o; RARP 11/2/16, ED Post RP, Cialis, Viagra, VED,TRIMIX painful, BIMIX ineffective,lost 2+ inches of length after RP. Revision 12/2/20 by Dr Clavell, AMS 700 CX, L 21 R 21+1.5 RTE.

dashriprock24
Posts: 6
Joined: Wed Mar 17, 2021 3:30 pm

Re: Hard Flaccid, ED, and Implant at 34

Postby dashriprock24 » Mon Sep 05, 2022 1:36 am

Thanks for the reply MK1965. The problem is, no doctor knows if a pudendal nerve is actually compressed until they cut you open. Many times PNE doctors have done this and it has lead to making the symptoms worse, such as increasing pain and numbness. This is why no insurance company covers PNE surgery anymore - because it doesn't have a high enough success rate. People who opt in for that surgery have to pay cash and know that it might make it better, might make it worse, or might not change at all. Chances are it might not even be entrapped and could be a neuralgia (nerve irritation/damage) which can't be fixed by surgery.

As far as Cialis and Viagra go, I have taken the higher doses and they haven't given me substantially higher results enough to justify continuing the higher dose. It's also to the point where it's too planned out, which is frustrating, and I have spent 5 years playing the pill game. In other words, Cialis and Viagra bought me the last 5 years if that makes sense? Could it buy me 5 more? Maybe. I don't know. What I do know though is I see many posts on here if individuals in their 40's and 50's who said they would have gone for the implant years earlier if they would have known what they know now (after being implanted and enjoying going bionic). I have seen posts too where people say they wish they would have skipped injections all together because of the pain, hassle, and lack of spontaneity.

I don't see people complaining about size loss as often when they are going to a reputable surgeon who sizes aggressively. The girth loss seems to be from guys who are bigger like 6 plus who are now down to 5.5 because of implant limitations. I'm at 4.75 and used to be at 5.25, so hoping if anything I could get some of my original size back.

I really do wholeheartedly appreciate your post. I'm not thrilled that this is my life by any means and I'm not begging to get an implant. 15+ years though! Anxiety, therapy, pill after pill, urologists, pelvic floor therapy, etc...I feel like I have fought the good fight and outside of Trimix injections, the implant is my next option.

Fourtytwo00
Posts: 289
Joined: Thu Jun 24, 2021 6:14 pm

Re: Hard Flaccid, ED, and Implant at 34

Postby Fourtytwo00 » Mon Sep 05, 2022 7:55 am

Under the supervision of a skilled andrologist / endocrinologist drugs could be tried in combo. Ex. cabergoline + PDE5 may enanche orgasm quality, Pentoxifillyne + PDE5, TRT + PDE5 (but I guess you've already checked your Testo), etc. I'm saying this because you're complaining issues related with sensitivity already before implanting. Are you confortable with the idea that you may lose further sensitivity / feelings after the surgery? Strictly speaking you won't have erections on demand. You could lift your penis on demand.

What is your wife opinion?

dashriprock24
Posts: 6
Joined: Wed Mar 17, 2021 3:30 pm

Re: Hard Flaccid, ED, and Implant at 34

Postby dashriprock24 » Mon Sep 05, 2022 9:46 am

FortyTwo - To my knowledge Pentoxifillyne promotes healthy blood flow, which I don't have a problem with. My problem is that I have numbness and lack of sensation which is making it hard for me to maintain erections and sometimes make it so I'm unable to get them at all. My testosterone levels were down to 300 in the am and 160 in the afternoon back in March, so I started TRT shortly after and have been on that ever since, which I was hoping would increase sensitivity but that's not the case. Estrogen levels and testosterone levels are now at peak performance.

I see many posts where people say the sensation they had prior was the sensation they had after being implanted. Many doctors have said this as well in YouTube videos I have watched. I know I run the risk of losing more sensation, but I'm damned if I do and damned if I don't I feel like. I could do nothing and I'd be in the same spot I am now, or I could go for the implant and hope that the sensation I have is in effected.

When you say "Strictly speaking you won't have erections on demand. You could lift your penis on demand." - isn't that the case for everyone with an implant, regardless of sensation? I'm asking honestly because I don't know.

I spoke with my wife about all of this more in depth last night and we are going to speak with my surgeon together sometime soon. I think my wife has seen me struggle with this for so many years that she wants me to do whatever will make me happy. Obviously it's life hanging and is a risk, but doing nothing really isn't an option anymore. Honestly though I would try almost anything so your continued suggestions are appreciated, I just feel like I have tried so many avenues and have met with many doctors.

Gt1956
Posts: 3042
Joined: Fri Apr 05, 2019 2:47 pm

Re: Hard Flaccid, ED, and Implant at 34

Postby Gt1956 » Mon Sep 05, 2022 12:37 pm

Dashriprock24: Carefull, some posters use translation software inorder to post here in American. Even the Brits use our shared language slightly differently.
Not having an erection on demand is obviously a language error. What could be more "on demand" that an erection that you can pump up yourself? I'm sure that you have "wished" your penis to get erect & it didn't work did it? So you don't have erections "on demand" now.
In my opinion, you've done the calculations as to your options. It sounds like you're like most of us & now realize there isn't much to lose.
I can't offer any advice as to your nerve problem. I only know that nerves can be a finicky thing to treat. My wife had constant wrist pain from a car accident. She was finally referred to a "pain" specialist. A very small specialty I must add. The guy was a freaking genius. For her, he had some methods to put that specific nerve bundle asleep. As it "woke up" it would reset the signal some back to normal. It took 3 times. Now it only gets a dull ache when the hand is tired.
I might suggest to investigate to see if there is a "pain specialist " in your area. They're hard to find. Her dr retired a few years after he treated her.
Good luck in your journey.
68yo, HBP at 40, high triglycerides at 45. Phimosis at 57. Type 2 at 60. Dr. William Brant May 1, 2023 CX 21cm w/no rte's penoscrotal 6" girth @ 6 months

Fourtytwo00
Posts: 289
Joined: Thu Jun 24, 2021 6:14 pm

Re: Hard Flaccid, ED, and Implant at 34

Postby Fourtytwo00 » Mon Sep 05, 2022 4:17 pm

dashriprock24 wrote:When you say "Strictly speaking you won't have erections on demand. You could lift your penis on demand." - isn't that the case for everyone with an implant, regardless of sensation? I'm asking honestly because I don't know.


Yes it's the case for everyone, just baseline differs. You wrote extensively about numbness, nerves, etc. You also wrote about your progress, which isn't so common in ED issues. Perhaps is worth trying to fix the most you can about feelings before going nuke. I had complete numbness during my worst prostatitis / inflamation. I was very depressed even after reading IPP success stories because the idea of having a surgery for being stiff but numb with a cold penis wasn't a great relief. But ok it's just me, everyone is different.

Pde5 + Pentoxifillyne was just an example of "salvage therapy". I mean every doctor can give a script for sildenafil. Some doctor can combine them and deliver better result. Perhaps cabergoline + PDE5 was a more appropriate example for you.

It's great you're having your wife by your side. Whatever you are going to do it's a plus. A big one.

dashriprock24
Posts: 6
Joined: Wed Mar 17, 2021 3:30 pm

Re: Hard Flaccid, ED, and Implant at 34

Postby dashriprock24 » Mon Sep 05, 2022 11:12 pm

Fourtytwo00 wrote:
dashriprock24 wrote:When you say "Strictly speaking you won't have erections on demand. You could lift your penis on demand." - isn't that the case for everyone with an implant, regardless of sensation? I'm asking honestly because I don't know.


Yes it's the case for everyone, just baseline differs. You wrote extensively about numbness, nerves, etc. You also wrote about your progress, which isn't so common in ED issues. Perhaps is worth trying to fix the most you can about feelings before going nuke. I had complete numbness during my worst prostatitis / inflamation. I was very depressed even after reading IPP success stories because the idea of having a surgery for being stiff but numb with a cold penis wasn't a great relief. But ok it's just me, everyone is different.

Pde5 + Pentoxifillyne was just an example of "salvage therapy". I mean every doctor can give a script for sildenafil. Some doctor can combine them and deliver better result. Perhaps cabergoline + PDE5 was a more appropriate example for you.

It's great you're having your wife by your side. Whatever you are going to do it's a plus. A big one.


FortyTwo- I need to clarify and make sure everyone knows the only progress I wrote about or saw through therapy was an improvement in pain - not in ED.

Is prostatitus and inflammation the reason you have ED? Do you currently have an implant? If so, is it the numbness that's stopping you?

You're right, having my wife by my side is an absolute blessing.

AllHailTed
Posts: 44
Joined: Fri Aug 20, 2021 7:23 am

Re: Hard Flaccid, ED, and Implant at 34

Postby AllHailTed » Fri Sep 30, 2022 11:08 am

dashriprock24 wrote:.


I'm in a similar boat to you, suffering from ED and pelvic floor issues for over 10 years, with HF/CPPS more recently. Like you, pelvic floor stretching has helped a lot with the pain aspect, but the ED is still present and has been a constant weight on my shoulders this past decade. I take cialis 5mg near daily and am considering adding viagra to the mix. An implant is on my radar too, although in my opinion poor sensation would be a fair trade for a far more reliable erection. Feel free to PM if you'd ever like someone to talk to, your story definitely resonated with me.

Agree with other posters that your wife sounds like a gem, you've fortunate to have someone like her by your side through all of this.
29 years old. ED caused by CPPS/HF-like symptoms since coming off antidepressants in 2012. Taking Cialis 5mg every other day and undergoing pelvic floor physiotherapy.

fucked0ne
Posts: 200
Joined: Wed Nov 22, 2023 7:47 pm

Re: Hard Flaccid, ED, and Implant at 34

Postby fucked0ne » Tue Jan 09, 2024 5:54 am

Dashriprock24,

Are you really even sure it's HF? I'm surprised you were able to stretch your flaccid to that extent! I figured the trapped pudendal causing end-organ issues would be more difficult to stretch given the constant state of contraction--at least it is for me. I'm 6.5 erect but can only stretch to 4! Like you, I'm also interested in an implant, but I wouldn't be able to deal with such a drastic loss in length.

fucked0ne
40. Implanted July 5, 2024, by Dr. Andrew Kramer, Urology Associates of Cape Cod. AMS LGX, 21cm cylinders + 2cm RTEs. Idiopathic erectile dysfunction following bacterial infection. Tried pulse waves, Cialis, even spinal injections. Nada.

Never_Enough
Posts: 177
Joined: Fri Nov 24, 2023 7:54 am

Re: Hard Flaccid, ED, and Implant at 34

Postby Never_Enough » Thu Feb 08, 2024 11:52 am

dashriprock24 wrote:Hello everyone!

I'm 34 years old and have been dealing with ED, Hard Flaccid for 15+ years, and more recently the latest 5 years Chronic Pelvic Pain and Pudendal Neuralgia symptoms. This all started afteR a bike accident where I hit my genitals very hard when I was younger. I have been using Cialis on and off for 5 years, have done pelvic floor exercises and stretches for 3 years, have had 3 sexual therapists to address psychological issues, and have tried many innovative treatments like PRP, stem cells, and even Class 4 Laser Therapy. The only thing I haven't tried wholeheartedly is trimix or other injections, mainly because I don't want it to irritate my symptoms.

I have been to many top urologist, including Dr. Lawrence Levine at Rush in Chicago, IL. All have concluded that my blood flow looks great and can't tell why I would struggle with ED. Many have said it's psychological, but I deal with extreme numbness, so much that I can't really feel the left side of my penis, and when I orgasm I can only feel pleasure on the right side. My hard flaccid comes and goes, and my pelvic pain has improved dramatically from the stretches I have done the past few years. All that being said, my ED persists, and even though I can sometimes get an erection for sex, other times I can't, and even when I do I never know how long I'm going to last. This psychological stress has lead to occasional PE as well.

I met with Dr. Helo at the Mayo Clinic in Rochester, MN back in May and she is onboard with me getting an implant and is ready when I am. Was going to fly out and see Eid but I like the idea of being close to home and she has reputable men I have talked to who can advocate for her. I understand I will probably have to get 4-5 revisions in my life unless the implant and procedure improves overtime. 15+ years is long enough and I think I'm ready. I'm happily married and my next step is talking about this to my wife with my doctor. She is hesitant I can tell because of how life changing of a procedure this could be for me if it's not the right move.

Here are my questions if anyone can offer insight:

If I had a venous leak this would be a no brainer, but instead I have problems with numbness and lack of sensation. I know the implant won't fix those sensations, but can anyone chime in who had numbness, got the implant, and felt like it was worth it?

My doctor did the stretch test and I'm sitting at 6.75 in. BPEL I'm usually over 7. I'm planning on pumping a few months to get the most out of that. Are the stretch tests all that reliable? I heard some doctors don't even do them anymore.

Does the penis look/feel substantially different when engorged/aroused compared to when you're not when the implant is fully inflated? In other words, if I wasn't aroused or engorged, would it be relatively the same size or smaller when pumped all the way?

Thank you!


What was the result of all this?

How did you get diagnosed with compression?

I have pelvic floor dysfunction but my PT who is one of the best in Europe said it isn't pudendal nerve compression.

Would be interested to. Know the sensation issues you were having compared to mine.

When my pf and bulbospongiosus muscles are tight the penis feels electrified and sometimes in a state of high sensation. Sometimes when it does this it's hard to get an erection.

The change in sensation tends to mean I don't always stay 100% hard but fluctuate around 80_90%.

,However I am aware I can stay 100% hard if the right stimulation is there.. Usually by partners hand.

Did you get an implant?

Thanks

Not numb though, there's always feeling in it... Was yours ever numb?

Orgasm still feels normal though.
38 m UK

Psychogenic ED since forever fewer problems being fully erect alone.
2 kids, 3rd on the way. Long term partner.
Chronic pelvic pain pudendal neuralgia and muscle tightness in late 2023 onwards making ED worse.
Cialis 5 mg daily and 15 mg as prn


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