1st Post - Introduction

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JustPassingThru
Posts: 3
Joined: Sun Jun 02, 2019 5:30 pm
Location: Arkansas

1st Post - Introduction

Postby JustPassingThru » Tue Jun 04, 2019 11:17 am

It is a little long, but here is my introduction:
In my 20’s I was close to 6” on a good day, but always rock hard. Never had a problem with erections until a tick bite at about 50 years old. It caused slight curvature and made me a little shorter. As time went by my erections grew less firm, but usually good enough for sex.
In early 2018, I was informed I had aggressive prostate cancer. The doctor indicated I might lose a small amount of length from robotic surgery. He made it seem like maybe ¼ inch. Faced with cancer, surgery seemed like a no brainer. Even with nerve sparing on the left side, the result of surgery was total loss of length and a half submerged glans. My VEL wouldn’t pull it out for months post surgery. After about 4 months I actually started getting spontaneous erections that were 1.5 to 2 inches long. I found a penis stretcher that would barely work for what they called a micro penis. I used it for 10 months. Gained almost an inch and growth stopped. If I sit down it still retracts up inside and feels like it is under tension. I have a motorcycle I have barely ridden for over a year and it is uncomfortable even driving a car. I recently bought a stronger battery operated vacuum pump that will pull me out to a little over 4 inches when laying flat. It goes down quickly, so I can’t get constriction bands on fast enough. Viagra is useless and Cialis is not enough. I do not understand the length change when I sit down or bend over. Even if I use the VEL and put on 2 cock rings at once to try to have sex it will pull through them and get shorter with any bending at the waist. I spent a lot of time on cancer and urology websites trying to find a solution. There is apparently no way to surgically lengthen a urethra. I want sex as much as anyone, but the flaccid length and tension causing discomfort/pain when sitting down was what was And is still driving me nuts. Depressed and at my wits end, I was beginning to think the only way out of this was to claim I was transgender and get bottom surgery and take testosterone the rest of my life.
I came across “Oldbeek” on one cancer website and he mentioned Frank Talk. There is a wealth of information here, and after a few weeks reading through posts, I have only scratched the surface. I finally have some hope. I feel like I know some of the members here even though none of you know me. I became a member a couple days ago. I am several months away from Medicare coverage and my wife has some health issues we need to work through as well. I plan to wait for Medicare to get implants, but have learned much about which surgeon to use and the right questions to ask. For the many on here who have helped me through you comments, and especially to Oldbeek, THANK YOU!
64, married 39, Type 2 Diabetes, Curved from 05 tick bite, RRP March 2018, 6.2 4+5=9, Nerve sparing L side, Lost 2.5+ in, spontaneous erections after 4 mo, too short for intercourse even with pills, penis stretcher & VED ineffective

bldoink
Posts: 1318
Joined: Mon Apr 03, 2017 12:58 am
Location: Fl.

Re: 1st Post - Introduction

Postby bldoink » Tue Jun 04, 2019 12:23 pm

Hi,
Welcome to the forum and good luck on your journey.
R.R.P 2011 Mayo Jacksonville by Dr. Michael Wehle. Nerve sparing - damaged. V.E.D, Viagra and Alprostadil (80mcg/ml) injections @ ~ 12 units. Originally Edex20. Switched to compounded Alprostadil - cost. Injecting ~ 8 yrs. It works. Treasure coast of FL.

User avatar
Larry10625
Posts: 4704
Joined: Sat Apr 15, 2017 10:56 am
Location: Ontario, CANADA

Re: 1st Post - Introduction

Postby Larry10625 » Tue Jun 04, 2019 4:20 pm

JustPassingThru wrote:It is a little long, but here is my introduction:
In my 20’s I was close to 6” on a good day, but always rock hard. Never had a problem with erections until a tick bite at about 50 years old. It caused slight curvature and made me a little shorter. As time went by my erections grew less firm, but usually good enough for sex.
In early 2018, I was informed I had aggressive prostate cancer. The doctor indicated I might lose a small amount of length from robotic surgery. He made it seem like maybe ¼ inch. Faced with cancer, surgery seemed like a no brainer. Even with nerve sparing on the left side, the result of surgery was total loss of length and a half submerged glans. My VEL wouldn’t pull it out for months post surgery. After about 4 months I actually started getting spontaneous erections that were 1.5 to 2 inches long. I found a penis stretcher that would barely work for what they called a micro penis. I used it for 10 months. Gained almost an inch and growth stopped. If I sit down it still retracts up inside and feels like it is under tension. I have a motorcycle I have barely ridden for over a year and it is uncomfortable even driving a car. I recently bought a stronger battery operated vacuum pump that will pull me out to a little over 4 inches when laying flat. It goes down quickly, so I can’t get constriction bands on fast enough. Viagra is useless and Cialis is not enough. I do not understand the length change when I sit down or bend over. Even if I use the VEL and put on 2 cock rings at once to try to have sex it will pull through them and get shorter with any bending at the waist. I spent a lot of time on cancer and urology websites trying to find a solution. There is apparently no way to surgically lengthen a urethra. I want sex as much as anyone, but the flaccid length and tension causing discomfort/pain when sitting down was what was And is still driving me nuts. Depressed and at my wits end, I was beginning to think the only way out of this was to claim I was transgender and get bottom surgery and take testosterone the rest of my life.
I came across “Oldbeek” on one cancer website and he mentioned Frank Talk. There is a wealth of information here, and after a few weeks reading through posts, I have only scratched the surface. I finally have some hope. I feel like I know some of the members here even though none of you know me. I became a member a couple days ago. I am several months away from Medicare coverage and my wife has some health issues we need to work through as well. I plan to wait for Medicare to get implants, but have learned much about which surgeon to use and the right questions to ask. For the many on here who have helped me through you comments, and especially to Oldbeek, THANK YOU!



Welcome to Frank Talk, all of us here are very supportive, ask anything, someone here should be able to answer it or send PM's. Good luck on your journey. :)

Larry
51 years old, married 29 years. Implanted Mar 30/17 by Dr. Brock of London, Ont, CANADA. (AMS 700 LGX 18 + 2). Had implant removed Apr 29/17 due to Septic Shock. Liposuction By Dr. Gan and re-implant by Dr. Brock (AMS LGX 15 + 2) Dec 14/17.

Frank Talk Admin
Site Admin
Posts: 492
Joined: Mon May 18, 2009 11:06 am
Location: NYC

Re: 1st Post - Introduction

Postby Frank Talk Admin » Mon Jun 17, 2019 6:08 pm

JustPassingThru
Sorry you have to be here. Glad you found us.

This sounds like it might be more than just post surgery loss of length. Some of what you are describing sounds like symptoms of Chronic Pelvic Pain Syndrome (CPPS) - which is surprisingly common. It is where the pelvic floor muscles are too tight and in constant spasm to some degree.
The solution is fairly easy. You need to find a pelvic floor physical therapist. These are PT's who are specially trained in this area. They would provide the DX and the treatment. If it is CPPS, it is very fixable.

Go to www.pelvicrehab.com, enter your zip code, and find a PT near you.
Post PCa surgery guys do kegels. The kegel exercises could be overdoing the PC muscles and pulling the penis in too much. The PT can figure it out. I may be totally wrong, but check it out.

This may not be it, but it sure sounds like it is part of the problem.
Let me know.
Paul

Evinrude
Posts: 75
Joined: Sun May 05, 2019 4:02 pm
Location: Bluffton, SC

Re: 1st Post - Introduction

Postby Evinrude » Sun Jun 23, 2019 7:27 pm

Frank Talk Admin wrote:

This sounds like it might be more than just post surgery loss of length. Some of what you are describing sounds like symptoms of Chronic Pelvic Pain Syndrome (CPPS) - which is surprisingly common. It is where the pelvic floor muscles are too tight and in constant spasm to some degree.
The solution is fairly easy. You need to find a pelvic floor physical therapist. These are PT's who are specially trained in this area. They would provide the DX and the treatment. If it is CPPS, it is very fixable.

Go to http://www.pelvicrehab.com, enter your zip code, and find a PT near you.
Post PCa surgery guys do kegels. The kegel exercises could be overdoing the PC muscles and pulling the penis in too much. The PT can figure it out. I may be totally wrong, but check it out.

This may not be it, but it sure sounds like it is part of the problem.
Let me know.
Paul
FWIW, I had CPPS just six months ago. In my case the syndrome manifest itself in extreme anal pain... like so bad I couldn't sit for more than ten minutes without pain. A typical urologists conclusion with the symptoms is prostatitis, or infected prostate. A problematic conclusion for two reasons 1. antibiotics difficult to penetrate prostate, thus months of treatment may be necessary and still might not work. 2. This is usually not the issue in the first place....the actual issue 90% of the time is psychological ! Like a stress headache in the anus rather than forehead. There are reports of guys so desperate to end the pain they have had prostate removed...and the pain was still there.

In my case 2 was it... I was in a very stressful situation at that time. Cure in my case was not exercises or special massage, but simply anti anxiety meds. Plus the knowledge of the feedback loop involved...the more it hurt, the more stressed I got, the more it hurt. The meds, plus awareness, allowed me to break that loop.
Age 65. Widower, relationship with fiance' age 48 for about a year so far. Developed ED about 2 years ago, Viagra worked at first but less and less so as time went on. AMS 700 LGX 15cm implant 6/19/19 Broderick @ Mayo C. JAX.

Alniter
Posts: 4
Joined: Wed Jun 26, 2019 4:56 pm

Re: 1st Post - Introduction

Postby Alniter » Thu Jun 27, 2019 12:29 am

Hello.

First post here. I am a 61-year-old who developed ED within the last two years and it's just gotten worse and worse. Viagra helps, but for me the side effects include days of strong body aches and headaches, often to the point of migraine, so my Viagra days are over. I also have BPH (about to be corrected with a Urolift procedure next week). I was hoping that was the culprit, but during my preliminary exam they induced erection via injection and did an ultrasound, which revealed hardened arteries in my penis, possibly due to a side effect of the very medicine I was taking for BPH (Finasteride). (I am pretty angry that I was never told by my previous urologist that this could be a side effect - he retired in December, just before I found out. Maybe it's best that he left before seeing me again!)

I am seriously considering an implant and joined the forum to ask questions concerning same. I have had preliminary discussions with my urologist but we agreed to table serious consideration until after the Urolift is done.

Evinrude
Posts: 75
Joined: Sun May 05, 2019 4:02 pm
Location: Bluffton, SC

Re: 1st Post - Introduction

Postby Evinrude » Thu Jun 27, 2019 7:24 am

Alniter wrote: I was taking for BPH (Finasteride). (I am pretty angry that I was never told by my previous urologist that this could be a side effect - he retired in December, just before I found out. Maybe it's best that he left before seeing me again!)

I don't think many knew the negatives of finasteride until recently. I remember reading an article in the NYTimes years ago regarding preventative suppliments and about unproven herbal medicines compared to some proven prescription meds. Finasteride was mentioned as an example of a prescription med that had proven benefits in preventing prostate cancer, no risks and no side effects.....Years later... D'oh !
Age 65. Widower, relationship with fiance' age 48 for about a year so far. Developed ED about 2 years ago, Viagra worked at first but less and less so as time went on. AMS 700 LGX 15cm implant 6/19/19 Broderick @ Mayo C. JAX.

JustPassingThru
Posts: 3
Joined: Sun Jun 02, 2019 5:30 pm
Location: Arkansas

Re: 1st Post - Introduction

Postby JustPassingThru » Sun Jul 14, 2019 12:11 am

Frank Talk Admin wrote:JustPassingThru
Sorry you have to be here. Glad you found us.

This sounds like it might be more than just post surgery loss of length. Some of what you are describing sounds like symptoms of Chronic Pelvic Pain Syndrome (CPPS) - which is surprisingly common. It is where the pelvic floor muscles are too tight and in constant spasm to some degree.
The solution is fairly easy. You need to find a pelvic floor physical therapist. These are PT's who are specially trained in this area. They would provide the DX and the treatment. If it is CPPS, it is very fixable.

Go to http://www.pelvicrehab.com, enter your zip code, and find a PT near you.
Post PCa surgery guys do kegels. The kegel exercises could be overdoing the PC muscles and pulling the penis in too much. The PT can figure it out. I may be totally wrong, but check it out.

This may not be it, but it sure sounds like it is part of the problem.
Let me know.
Paul


Thanks for the idea Paul. I had not heard of this before. I have a GP appointment next week and I will ask him. My urologist appointment is about 3 weeks out. I googled this and it seemed to be related most of the time to the prostate, but I wonder if there could be some kind of trauma from the surgery itself causing it? My urologist never told me ahead of surgery to do the kegels and when he told me afterwards, my muscles just didn't seem to have the same activate buttons, if you know what I mean. Probably nerve shock. Either way, by the time I "found" the muscles again, I was getting better on incontinence and didn't do many kegels. I don't remember my penis pulling in like this before surgery. But of course it was longer then and might not have been so noticeable. I have not talked to my GP about this problem, but have given my urologist an earful. I was already planning to talk about this with my GP next visit to see if he had any recommendations. I have spent literally hundreds of hours online with multiple cancer and urology websites, even looking into what FtM transsexuals do to increase their length. I have considered going after implants, and getting with Dr Kramer to see if he can help. I have run into only a few others post op that have a situation like mine. Most that complain are shorter, but do not have the changing length/pulling problem. I have worried that the pulling in when sitting might cause damage or puncture if I was implanted. I will let you know what I find out. There are 2 PTs that are within a 30 minute drive from me according to the website you gave me. Thanks again.
64, married 39, Type 2 Diabetes, Curved from 05 tick bite, RRP March 2018, 6.2 4+5=9, Nerve sparing L side, Lost 2.5+ in, spontaneous erections after 4 mo, too short for intercourse even with pills, penis stretcher & VED ineffective

vajim1
Posts: 44
Joined: Tue Jan 16, 2018 2:19 pm

Re: 1st Post - Introduction

Postby vajim1 » Sun Jul 14, 2019 7:28 am

Don't give up on using the Ved. it takes time, use it twice a day, pump up hold it for several minutes and release, repeat as much as you can without causing damage to penis. I was 7.5" before surgery and after I had about 2". I am now back to normal after two years. Nothing works for erections so I am going for an implant. Surgery involves cutting the urethra and you have to stretch it back. I use the Encore pump, Inject Trimix, wait a few minutes, pump up, put cock ring on, release pressure, put pump over cock ring and pump up again. This I repeat as necessary for intercourse.
Hope this helps and keep trying.
email me if you have questions. Jim
76 year old fart.Radical prostectomy Oct. 9, 2017,Psa 30 days after .15 next Psa .2. 37 Radiation treatments for recurrent cancer, 90 days out Psa .1, last Psa .047 ZERO ERECTIONS,

JustPassingThru
Posts: 3
Joined: Sun Jun 02, 2019 5:30 pm
Location: Arkansas

Re: 1st Post - Introduction

Postby JustPassingThru » Mon Jul 15, 2019 11:13 am

vajim1 wrote:Don't give up on using the Ved. it takes time, use it twice a day, pump up hold it for several minutes and release, repeat as much as you can without causing damage to penis. I was 7.5" before surgery and after I had about 2". I am now back to normal after two years. Nothing works for erections so I am going for an implant. Surgery involves cutting the urethra and you have to stretch it back. I use the Encore pump, Inject Trimix, wait a few minutes, pump up, put cock ring on, release pressure, put pump over cock ring and pump up again. This I repeat as necessary for intercourse.
Hope this helps and keep trying.
email me if you have questions. Jim


Hi Jim, I have not given up on VED, but when I use it I have aches/pain in my groin, gut, & sometimes penis afterward for 2-3 days, especially if I do not stay absolutely flat while doing it. Because of that I only do it 2-3 times per week. I have sit up sometimes on purpose, trying to stretch it even more, but always pay for it later. I ached and hurt almost all the time for the first few months after surgery, when I was using a penis stretcher 4-6 days a week. Made it a little difficult to walk much and be active at my job. I have actually got back to about my pre surgery length in the last month or so when inside the VED, but not any other way. Mike
64, married 39, Type 2 Diabetes, Curved from 05 tick bite, RRP March 2018, 6.2 4+5=9, Nerve sparing L side, Lost 2.5+ in, spontaneous erections after 4 mo, too short for intercourse even with pills, penis stretcher & VED ineffective


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