FrankTalk.org

All,

I've been learning from this forum since Feb 2013 and although I've posted a few questions here and there, I felt it was time to open a thread and document my own journey.

I have found the journals that many of you have posted here to be extremely helpful, especially:

merrix, titanguy, Cnidium, Jamesmj and others. Thank you all.

The Medical Issues Leading to my ED:

I'm 45 and fairly fit having been a lifelong athlete. I spent most of my 30's doing distance running, which led to a combination of injuries due to my size (6'3" 195 pounds). Specifically I tore the labrum in my hip in 2010 which led to a degenerated L5/S1 disc, and a loose left SI joint. These went incorrectly diagnosed and over a few years of running on them still led to pudendal nerve pain starting in 2012, which I'm still working to fully resolve through PT. The pudendal nerve issues led to penile pain as well as reduced penis sensitivity and it increasingly took me longer and longer to orgasm with my partners.

I had the left hip labrum repaired in 2015 and also had two rounds of prolotherapy into the left SI joint which has made it stable but actually overly stiff (which pulls on the nerve). In May I had a laser microdisectomy to the L5/S1 to remove left over disc fragments and scarring at the recommendation of Dr Irwin Goldstein in San Diego, as he felt it was a major cause of my reduced nerve sensation.

So what does all this orthopedic stuff have to do with erectile dysfunction and this forum?

These three issues are the upstream injuries that led to the pudendal nerve issues (the one that goes into your perinieum and penis) that subsequently led to my ED.

I first noticed having trouble finishing with a girl in 2013 when my pain was at its worst. It was scary to say the least, the sensation in my dick wasn't the same and I just couldn't get through it. That experience motivated me to dive in and really push through my doctors to find all of the issues above and work to get them fixed. It's been a 7 year journey and I'm still working on it. My biggest frustration is how much time and effort I have to put in to solve the overall puzzle, and the degree to which I have to be the expert in order to manage my doctors.

The scare came in 2016 when I first noticed the ED. It was late at night and at first I chalked it up to being tired. My doctor wrote me a prescription for 5mg cialis and I would take it on an ad-hoc basis on days when it looked like I'd be having sex. Looking back I should have been taking a daily dose of 10mg or so to get consistent erections, because not being consistent is what led me to injure my penis during sex.

Although I managed to improve my orthopedic injuries above and the resulting nerve pain between 2013 and 2018, my ED was slowing growing worse. Knowing what I know now I believe this was because I was having a lot of sex and I would go for an hour or two each time. Over time I think I was slowly damaging the erectile tissue at the base of my shaft.

This led me to find Dr Goldstein in early 2018, and his ultrasound findings confirmed that my erectile tissue was healthy except at the base of my penis. We did three rounds of PRP between Jan and Mar 2018 at which time he said things looked "much better". I continued taking cialis at random and thought things were good, but my ED was slowing getting worse going in to 2019. Some days were good for ED and some were bad.

One day I was being spontaneous with a girl I was seeing and we went for a quickie in my bedroom. I was about 90% hard and her being petite it was difficult for me to get my penis inside her. I bent it a few times trying to go in but eventually got it, and we had sex twice that night and the next day. I felt no pain and things seemed fine, until later the next day my penis was swollen but not discolored. I visited a local urologist and he said it was minor, and just rest it for two weeks. He was wrong.

Things were getting worse over the course of Feb, and I went down to see Dr Goldstein again. He found there was a small fracture, and did another round of PRP. He also recommended I go to Greece and get shockwave therapy with a doctor he works with there. I spent the month of March in Greece and got 13 rounds of shockwave while also trying to rest my penis. During this time my penis was very sore at the base, but going in to April things somewhat improved and I was able to have limited sex again.

Dr Goldstein cleared me to continue having sex but recommended I also take bimix to ensure a full erection to avoid further injury. A lot of guys hate the shots and so do I, but a healthy sex live is important to me so from my perspective it was worth it. I took the shots as needed starting in May, but they quickly became less effective over the course of the month.

From all this my penis developed an extra 5-10% curve, and my erection quality was worse than before. In April I started taking Pentoxifylline, L-carinitine, and L-Arginine as well as 20mg Cialis daily to address the potential fibrosis I may have been developing. I have no side effects.
From May-Jul I've been able to have regular sex, but I lose my erection very quickly unless it gets constant stimulation. From the ultrasounds I'm getting good bloodflow in, but it's leaking out due to the damaged tissue not healing right.

At the end of May I was finally able to get the L5/S1 surgery taken care of and that went very well. I'm still recovering slightly but it's been a help to reduce my nerve pain.

Competing Treatments

Right now I'm struggling to decide the best way forward. I've got competing options from the experts.

Unfortunately my ED continues to get worse so I went to see Dr Tom Lue in San Francisco to get a second opinion in July. His view was that I was doing the bimix shots incorrectly by not pinching my penis long enough afterwards, and this was further damaging my erectile tissue. His advice is to not have too much sex, keep taking the Pentoxifylline, and things should heal over time. He does not feel I'll need an implant until my 70's if at all.

Dr Goldstein has advised against taking the Pentoxifylline and recommends continued shockwave treatments at his office (which are profitable to him). He recommends I continue having sex as it's good to use the erectile tissue. He advises an implant is the last resort.

In the mean time this Monday I've gone to see Dr Eid in NYC. He feels I'm a good candidate for a implant given the leakage we see on the ultrasound test we did. He measured me at 16cm length and 14.5cm circumference, and would likely implant a Titan 24cm with the back of it cut off slightly, to get a good rigidity ratio and avoid using an RTE. Unfortunately I have a mild hematoma from the injection procedure he did for the test, and haven't been able to get much of an erection since, although Dr Eid says this should improve in a week or two.

The final complication is I was also diagnosed with a Vericocele, which has reduced my sperm count. Because I plan to have a kid in the next 2-3 years I want to get this fixed which requires surgery to remove some veins from my testicles. I meet with the surgeon to learn more in two weeks. Dr Eid recommends that if I want to have this done, that I do it before getting an implant.

Where do I go from here?

My plan is to get the Vericocele repaired in Sep if I can, and use the time to rest and heal as much as possible. If I don't show improvement by October than I would look to schedule an implant with Dr Eid for the Nov-Dec timeframe. Other than these issues in this post I'm extremely healthy for my age and have a have a high sex drive. I've got a very good sex life despite the ED. I have sex 4-6 times a week working around the problems of less sensation, longer times to orgasm, and that I lose my erection without constant stimulation. My ultimate goal is to eliminate the pain from my injuries and also restore full sexual function and pleasure. I would love to do this without an implant, but if I have to get an implant to achieve these goals I will do it.

I've been speaking on the phone to several past patients of Dr Eid to understand their experiences. I'd love to get all of your great thoughts as well.

Here are some questions I still have:

1. Given my history above and the chance I have to get (somewhat) better without an implant, what would you do?
2. For those of you who got an implant, did you experience any reduced sexual pleasure after recovering compared to how you were? I only have some reduced sensation and worry about it getting worse.
3. I understand about the higher infection rates of revision surgeries as well as the potential for reduced sensation with subsequent revisions. What has been the experience of any of you guys who are on their 2nd or 3rd implant? Have you experienced reduced sensation and/or delayed orgasm?
4. If restoring my performance is important to me, is there any reason why I should wait to get an implant in the hope I will heal vs just getting one this fall?

This forum has been a big help. Thank you all once again.

charlie17 wrote:All,

I've been learning from this forum since Feb 2013 and although I've posted a few questions here and there, I felt it was time to open a thread and document my own journey.

I have found the journals that many of you have posted here to be extremely helpful, especially:

merrix, titanguy, Cnidium, Jamesmj and others. Thank you all.

The Medical Issues Leading to my ED:

I'm 45 and fairly fit having been a lifelong athlete. I spent most of my 30's doing distance running, which led to a combination of injuries due to my size (6'3" 195 pounds). Specifically I tore the labrum in my hip in 2010 which led to a degenerated L5/S1 disc, and a loose left SI joint. These went incorrectly diagnosed and over a few years of running on them still led to pudendal nerve pain starting in 2012, which I'm still working to fully resolve through PT. The pudendal nerve issues led to penile pain as well as reduced penis sensitivity and it increasingly took me longer and longer to orgasm with my partners.

I had the left hip labrum repaired in 2015 and also had two rounds of prolotherapy into the left SI joint which has made it stable but actually overly stiff (which pulls on the nerve). In May I had a laser microdisectomy to the L5/S1 to remove left over disc fragments and scarring at the recommendation of Dr Irwin Goldstein in San Diego, as he felt it was a major cause of my reduced nerve sensation.

So what does all this orthopedic stuff have to do with erectile dysfunction and this forum?

These three issues are the upstream injuries that led to the pudendal nerve issues (the one that goes into your perinieum and penis) that subsequently led to my ED.

I first noticed having trouble finishing with a girl in 2013 when my pain was at its worst. It was scary to say the least, the sensation in my dick wasn't the same and I just couldn't get through it. That experience motivated me to dive in and really push through my doctors to find all of the issues above and work to get them fixed. It's been a 7 year journey and I'm still working on it. My biggest frustration is how much time and effort I have to put in to solve the overall puzzle, and the degree to which I have to be the expert in order to manage my doctors.

The scare came in 2016 when I first noticed the ED. It was late at night and at first I chalked it up to being tired. My doctor wrote me a prescription for 5mg cialis and I would take it on an ad-hoc basis on days when it looked like I'd be having sex. Looking back I should have been taking a daily dose of 10mg or so to get consistent erections, because not being consistent is what led me to injure my penis during sex.

Although I managed to improve my orthopedic injuries above and the resulting nerve pain between 2013 and 2018, my ED was slowing growing worse. Knowing what I know now I believe this was because I was having a lot of sex and I would go for an hour or two each time. Over time I think I was slowly damaging the erectile tissue at the base of my shaft.

This led me to find Dr Goldstein in early 2018, and his ultrasound findings confirmed that my erectile tissue was healthy except at the base of my penis. We did three rounds of PRP between Jan and Mar 2018 at which time he said things looked "much better". I continued taking cialis at random and thought things were good, but my ED was slowing getting worse going in to 2019. Some days were good for ED and some were bad.

One day I was being spontaneous with a girl I was seeing and we went for a quickie in my bedroom. I was about 90% hard and her being petite it was difficult for me to get my penis inside her. I bent it a few times trying to go in but eventually got it, and we had sex twice that night and the next day. I felt no pain and things seemed fine, until later the next day my penis was swollen but not discolored. I visited a local urologist and he said it was minor, and just rest it for two weeks. He was wrong.

Things were getting worse over the course of Feb, and I went down to see Dr Goldstein again. He found there was a small fracture, and did another round of PRP. He also recommended I go to Greece and get shockwave therapy with a doctor he works with there. I spent the month of March in Greece and got 13 rounds of shockwave while also trying to rest my penis. During this time my penis was very sore at the base, but going in to April things somewhat improved and I was able to have limited sex again.

Dr Goldstein cleared me to continue having sex but recommended I also take bimix to ensure a full erection to avoid further injury. A lot of guys hate the shots and so do I, but a healthy sex live is important to me so from my perspective it was worth it. I took the shots as needed starting in May, but they quickly became less effective over the course of the month.

From all this my penis developed an extra 5-10% curve, and my erection quality was worse than before. In April I started taking Pentoxifylline, L-carinitine, and L-Arginine as well as 20mg Cialis daily to address the potential fibrosis I may have been developing. I have no side effects.
From May-Jul I've been able to have regular sex, but I lose my erection very quickly unless it gets constant stimulation. From the ultrasounds I'm getting good bloodflow in, but it's leaking out due to the damaged tissue not healing right.

At the end of May I was finally able to get the L5/S1 surgery taken care of and that went very well. I'm still recovering slightly but it's been a help to reduce my nerve pain.

Competing Treatments

Right now I'm struggling to decide the best way forward. I've got competing options from the experts.

Unfortunately my ED continues to get worse so I went to see Dr Tom Lue in San Francisco to get a second opinion in July. His view was that I was doing the bimix shots incorrectly by not pinching my penis long enough afterwards, and this was further damaging my erectile tissue. His advice is to not have too much sex, keep taking the Pentoxifylline, and things should heal over time. He does not feel I'll need an implant until my 70's if at all.

Dr Goldstein has advised against taking the Pentoxifylline and recommends continued shockwave treatments at his office (which are profitable to him). He recommends I continue having sex as it's good to use the erectile tissue. He advises an implant is the last resort.

In the mean time this Monday I've gone to see Dr Eid in NYC. He feels I'm a good candidate for a implant given the leakage we see on the ultrasound test we did. He measured me at 16cm length and 14.5cm circumference, and would likely implant a Titan 24cm with the back of it cut off slightly, to get a good rigidity ratio and avoid using an RTE. Unfortunately I have a mild hematoma from the injection procedure he did for the test, and haven't been able to get much of an erection since, although Dr Eid says this should improve in a week or two.

The final complication is I was also diagnosed with a Vericocele, which has reduced my sperm count. Because I plan to have a kid in the next 2-3 years I want to get this fixed which requires surgery to remove some veins from my testicles. I meet with the surgeon to learn more in two weeks. Dr Eid recommends that if I want to have this done, that I do it before getting an implant.

Where do I go from here?

My plan is to get the Vericocele repaired in Sep if I can, and use the time to rest and heal as much as possible. If I don't show improvement by October than I would look to schedule an implant with Dr Eid for the Nov-Dec timeframe. Other than these issues in this post I'm extremely healthy for my age and have a have a high sex drive. I've got a very good sex life despite the ED. I have sex 4-6 times a week working around the problems of less sensation, longer times to orgasm, and that I lose my erection without constant stimulation. My ultimate goal is to eliminate the pain from my injuries and also restore full sexual function and pleasure. I would love to do this without an implant, but if I have to get an implant to achieve these goals I will do it.

I've been speaking on the phone to several past patients of Dr Eid to understand their experiences. I'd love to get all of your great thoughts as well.

Here are some questions I still have:

1. Given my history above and the chance I have to get (somewhat) better without an implant, what would you do?
2. For those of you who got an implant, did you experience any reduced sexual pleasure after recovering compared to how you were? I only have some reduced sensation and worry about it getting worse.
3. I understand about the higher infection rates of revision surgeries as well as the potential for reduced sensation with subsequent revisions. What has been the experience of any of you guys who are on their 2nd or 3rd implant? Have you experienced reduced sensation and/or delayed orgasm?
4. If restoring my performance is important to me, is there any reason why I should wait to get an implant in the hope I will heal vs just getting one this fall?

This forum has been a big help. Thank you all once again.

Dont go for shockwave!! It helped me for 2-3 monts but after that I started to develop scartissue/peyronies.
Curvature and lumps inside the c.cavernosas.
I knew I had scartissue it but when I did my implant operation with Dr Eid last week he discovered A LOT of scartissue that limited my results with the implant. I now have a small hourglass at the top of my left tube that can´t expand like the rest of the tubes because of the scartissue. It´s not a huge thing but a bit annoying.

I zoomed out and reasoned like this...(Struggled for 15 years and tried to find solutions, tried eeeeeverything possible).
I´m am not getting better....only worse.... two treatments have in one or another way made my issues worse.
The Shockwave was the worst one!

I thought that before I ruin my dick completely and wait too long until my whole thing is full of fibrosis and peyronies, I will go for the implant ASAP. Because no matter what direction I look, I´m getting worse so to have the best
result possible, still young and healthy. I will go for the implant to ensure best possible outcome.

I did have erection with pills but it really didn´t work that well for so many reasons.

zoom out and think about it. thats my advice

//K

That's great advice thank you.

I've done 15 rounds of shockwave now and I'm done with it. I don't think it did anything, positive or negative. I do think the bimix made things worse (it amazes me that Dr Goldstein, Dr Lue, and Dr Eid all had different protocols for injections) so I won't do those again either.

I will either need to perform "good enough" with rest and Cialis (20 mg daily plus another 20mg a few hours before sex), or eventually get an implant.

I did speak to Dr Eid again after I posted today. His advice essentially matches Dr Lue....wait on the implant as long as I can.

charlie17 wrote:That's great advice thank you.

I've done 15 rounds of shockwave now and I'm done with it. I don't think it did anything, positive or negative. I do think the bimix made things worse (it amazes me that Dr Goldstein, Dr Lue, and Dr Eid all had different protocols for injections) so I won't do those again either.

I will either need to perform "good enough" with rest and Cialis (20 mg daily plus another 20mg a few hours before sex), or eventually get an implant.

I did speak to Dr Eid again after I posted today. His advice essentially matches Dr Lue....wait on the implant as long as I can.

Yeah well if cialis works and you are okey with the results keep on doing it and then go for implant when you need to.
But I´ve heard from soo many especially younger guys. They say I should have done this loong ago.
I havn´t started having sex with my implant yet but just just the feeling now of beeing super hard as long as I want to, when I want to, with out pills. Just that feeling is almost enough for me. no worries about timing, what you had to eat and so on. When I was dating the timing thing was not a problem because you can predict very easily but in a steady realtionship it becomes so hard and it actually ruined our sexlife. Now we are hopefull and can´t wait to get going

But yeah push the Cialis as far as possible and read up on and educate your self on implants so you are mentally ready for it. If and when that time arrives.

Softtohard, I agree. It seems like the younger members feel that E/D is temporary or easily cured. E/D is more like diabetes in the sense that it is progressive. It will continue on the path as it wants to. Maybe being older gives a guy a different vision. They've seen the gradual failures & the decline in effectiness of oral meds. I remember when around 30mg of Viagra worked like a champ. Only took a few years to get where 200mg didn't work at all. I really wish that there was words to explain that it's not if you need an implant but when.

Yeah, the whole decision to get an implant is a funny one. The second I knew what the implant was, what is success rate was and that young people had them, I knew 100% then and there that it was for me. That was close to a year ago and I haven't for one second doubted it. Not one second.

What was most interesting to me was to come on here and see most people really struggle with the decision. It actually showed me how serious my problem was that I had ZERO doubts about getting it done. I have had ED since my first encounter, and so, have ABSOLUTELY NO IDEA what it's like to have sex carefree like a regular person. The implant will allow me to have sex without the toxic cloud that ED creates, so I am in!

Most people have had a number of years of normal sex before developing ED. It is these people that struggle to make a decision as they rightly want to make sure they are not able to get back to their former selves. If that is where you are at then keep at it. The implant will only make sense once you've lost all hope. Then getting it done will make perfect sense.

charlie17 wrote:I will either need to perform "good enough" with rest and Cialis (20 mg daily plus another 20mg a few hours before sex), or eventually get an implant.

Could you really take 20mg and then another 20mg? Would you not be floored from the side effects? I am so sensitive to them, I get a blinding headache for two solid days just from 20mg of Cialis. Viagra is worse. I am ill on the couch for the rest of the day from 100mg.

Great comments and I appreciate your perspective. I have absolutely experienced how ED is like a progressive deterioration like diabetes, that's been my experience as well.

To be honest I was about ready to pull the trigger for this fall but Dr Lue and Dr Eid have talked me out of it for now. I will give it a few months and reassess.

Having a healthy and vigorous sex life is important enough to me that I won't go more than a month or two of not being able to perform before I take the leap and get an implant if that's what it takes.

Sex with an implant feels great! My penis is just as sensitive as it was before my prostatectomy (in 20000, which was the cause of my E.D.). My hard (meaning inflated) penis feels as firm as when I was younger. No problems for me or for my wife.

Charlie17, a piece of advice. I don't know if it's reasonable to expect surgery with a 2 month notice. Please take a little time every week. Research the surgeons that are available. Don't be afraid to have it done by someone other than the popular 3. Believe it or not, there are actually quite a few that can do it just fine.
Once you narrow it down to a couple of surgeons. Contact their staff & see if you can get your insurance to approve the surgery. Self pay is an option. Really, it only costs about what a good newer model of a used car does.
Try to get as much of the preliminary stuff done before hand. It'll take a lot of stress off of you once you make your decision. Best of luck.

Gt1956 wrote:Really, it only costs about what a good newer model of a used car does.

And the service life of the vehicle (car or implant) is about the same, too.