Hope all’s well. My name’s Shaad, 34, from NY. I found you from searching. I feel that after years without success with typical treatments of ED, penile implant may be on the table now. Any useful advice is appreciated thru here or other forms of contact. In respect of your time, I’ll try to describe years of ED as shortly as I can. If you don’t want to go thru my long history at the bottom of this post, you can skip that and I would request to only review the questions at the top of this post here:

1) I’ve heard a mix of good/bad stories on penile prosthesis. Most forums and published medical studies I’ve came across show positive data. On this forum, I’ve heard mixed stories. 1 thread in particular shared below has many bad stories that may scare me out of it. The many bad stories in that thread makes me question if the positive data from other sources is deeply rooted in corrupt sales marketing? If not, then somehow many people with bad experiences found their way all into one thread here?: https://www.steadyhealth.com/topics/removal-of-penile-implant

2) I’m considering Dr. Francois Eid or Dr. Andrew Kramer, but am open to researching more doctors. Recommendations? Anyone regret getting penile implants, especially from these 2 docs?

3) I’ve mostly seen data of high satisfaction rates reported by mostly elders, and not much data on how satisfied a young person still is with implants 10-35 yrs later. Are you aware of such data?

4) I read the device need repair/replacement after a couple yrs.  After each repair/replacement: 3A. Does the chance of infection increase? If so, how much and how severe can infection be? 3B. Does the penis shrink further? On average, how much? 3C. Is there additional pain? If so, how much? 

5) How do most patients describe their pain level and how long it took before they can satisfyingly use the implant with none-moderate pain?

6) Are there any other health risks for someone young that I should be aware of?

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To best understand why I feel penile implant is my best option now, I would need to share my long history:

I’m 5’11 and 179lbs. I’ve had ED at least since around 19. None-minimal morning wood. I get an erection when desired about 65% of the time, and can hold it successfully for intercourse about 33%. Oddly, my libido and ability to hold an erection appears to get worse if I’m standing, which I read may be venous leakage.

I tried eating better and exercise even though I was a good weight. As it didn’t help much, I visited local doctors. In my mid 20s, I was prescribed tadalafil. As it was expensive back then compared to now, I bought tadacip (generic tadalafil) online from an indian pharmacy. I wasn’t sure if pills were real, but they likely were as reviews from many sites were good. It worked well, but then stopped working after 2 weeks. Not even 20mg of generic tadalafil a day helped at that point. Maybe I built up tolerance & needed a break. Although I’m unsure if it was the pills, the high dose probably bothered my back badly, but it’s ok now. 

Later, doctor did a penile doppler scan that shows arteriogenic dysfunction. He believed the cause to be congenital or due to a penis injury, but I don’t recall any. He recommended bimix/trimix. Tried it and wasn’t happy for the usual reasons. Also, the response was unpredictable. Sometimes I’d stay hard longer than I wanted to, which was a problem if I needed to be in public.

My testosterone labs often came back on the high end of low - low end of normal, and my estradiol often came back low. I did some thorough research online and found a TRT specialist with positive reviews. While he wasn’t an ED specialist, the idea was that if my levels increase to a therapeutic level, ED may go away. He honestly told me TRT may be a 6-12month process before it fixed ED, if it does at all.  He tried testosterone and hcg shots, plus Anastrozole. The dosage was similar to standard therapy, usually around 28-32cc (56-64mg) testosterone cypionate twice a week, HCG 400-500iu twice a week, 0.3mg anastrozole twice a week, and 7mg tadalafil a day as needed. This combination improved my ED only somewhat. He routinely checked my blood work every 3-6 months. Generally kept my lab values of testosterone near the high end of normal - low end of high. After 1-2 yrs, I realized this protocol wasnt helping enough so I tapered off. 

 

Based on my research, I think I should:

  1. Retry tadalafil one more time, but this time from a source I’m sure is legit as I know generic tadalafil is now available legally in the states.

  2. If tadalafil fails me, consider a penile implant.

If you know of any other better alternatives, or new better treatments that are coming out fairly soon, let me know.

 

Medical conditions that may be causes/contributors to ED: 

----- I know I had high cholesterol since youth, and maybe that led to ED. I recall my primary checked cholesterol around my late teens. He told me it was high for someone young. It may be genetic as my skinny mom has high cholesterol too. I eat better than the average american and exercise, but total cholesterol and LDL results still often come back on the low end of high these days.

----- Moderate pain and occasional involuntary spasms, mostly on the left side of my body only, mainly near core/pelvic regions and head. Possibly from playing alot of basketball in my youth and heavy lift exercises in my 20s. Had 1 MRI that stated mild spinal stenosis (dad has severe spinal stenosis) with disc herniation at L5-S1, and another that only mentioned disc herniation at L5-S1 and no spinal stenosis. Tried PT without much success. Managed thru exercise.

----- As explained earlier, I’ve had testosterone tested multiple times that often came back on the high side of low. Not sure why it’s low but as I once heard my brothers T was low, so it may be genetic. His sex life appears normal.

 

Medical conditions less likely related:

----- Irregular bowel movements for yrs. Powdery/loose stool 1-2x a week on avg for probably a decade. About 5 yrs ago, doctor did a colonoscopy and found nothing. He believed it to be diet related. Recently, I think I noticed that once I stop eating probiotic foods and oatmeal for awhile, the irregular bowel movements returned, so that’s how I manage.

----- Eczema flareups every few yrs. Sometimes moderate or severe. When severe, I used to resort to steroid creams or prednisone more when I was younger, but now I try my best to manage naturally.