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Author Topic: Advice, Penile Implant For Young Patient Who Exhausted Usual Treatments  (Read 148 times)

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PeaceOfPainSeeker007

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If you don’t want to go thru my long history in my 2nd post, you can skip that and I would request to review the questions in my 1st post here:

Hope all’s well. My name’s Shaad, 34, from NY. I was never told I have Peyronies, but I feel that after years without success with typical treatments of Erectile Dysfunction, 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 Erectile Dysfunction as shortly as I can.

1) I’ve heard a mix of good/bad stories on penile prosthesis. Most forums and medical studies I’ve came across show positive data, but then I've seen some places share bad stories. The bad stories makes me question if the positive data from most sources might be a complicated form of sales marketing?

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 15-35 yrs later. Are you aware of such data? Is there anyone out there who got a implant while young, and can report how satisfied they are 15-35yrs later?

4) Being young, I'll likely do more revisions as I get older than elders, so the impact from multiple revisions will effect me more. After EACH repair/replacement:
4A. Does the chance of infection increase? If so, how much and how severe can infection be?
4B. Does the penis shrink further? On average, how much?
4C. 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) Is there any other advice you can give for someone young considering an implant who exhausted usual treatments?
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PeaceOfPainSeeker007

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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. This part can be ignored if you don't have the time:
I’m 5’11 and 179lbs. I’ve had Erectile Dysfunction 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 Erectile Dysfunction specialist, the idea was that if my levels increase to a therapeutic level, Erectile Dysfunction may go away. He honestly told me TRT may be a 6-12month process before it fixed Erectile Dysfunction, 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 Erectile Dysfunction 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:
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.
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 Erectile Dysfunction:
----- I know I had high cholesterol since youth, and maybe that led to Erectile Dysfunction. 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 as I'm muscular. Most likely genetic as my brother's is low too, but 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.
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samsung

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Hey, I can't comment on the rest, but I'm just curious if you are or ever have been on any benzodiazepines. I ask because I have stenosis, loose stools, exzema, pain and everything else you do. I had non existent morning wood starting young as well.
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44 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 3 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TonySa

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Hi Peace,


4) Being young, I'll likely do more revisions as I get older than elders, so the impact from multiple revisions will effect me more. After EACH repair/replacement:
4A. Does the chance of infection increase? If so, how much and how severe can infection be? 


It increases, unless you have an excellent high volume doc w low infection rates and then much lower rates.

4B. Does the penis shrink further?


On average, how much?


On average, w each revision guys are upsized.

4C. Is there additional pain? If so, how much


From my readings (and my one revision), pain is less.  Perhaps because one knows what to expect.
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

PeaceOfPainSeeker007

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Hey, I can't comment on the rest, but I'm just curious if you are or ever have been on any benzodiazepines. I ask because I have stenosis, loose stools, exzema, pain and everything else you do. I had non existent morning wood starting young as well.

Hi Samsung, I haven't. Interesting to meet someone so similar. Has something worked for you to treat Erectile Dysfunction or any of those other symptoms we share?

4) Being young, I'll likely do more revisions as I get older than elders, so the impact from multiple revisions will effect me more. After EACH repair/replacement:
4B. Does the penis shrink further? On average, how much?
On average, w each revision guys are upsized.

Hi TonySa, are you saying after each revision, the size is more? What I heard so far is that for the 1st surgery, the length 0.5-1inch less or the same,  and the girth may slightly increase or is the same. I unfamiliar with what future revisions do to the size.


What my plan will likely be after speaking with people:
-Research what pelvic floor specialist or physios can do for Erectile Dysfunction as I have back pain that can contribute to Erectile Dysfunction. If it's something I havent tried already, then I'll try their treatment. Research what red light therapy can do for Erectile Dysfunction.

-I'm at the higher end of a healthy BMI (5'11, 180lbs) with slightly above average muscle. Over the next 2-3 months, I'm going to drop my weight to the middle of a healthy BMI, 160lbs. Doing that might help with Erectile Dysfunction and lowering genetically high cholesterol.

-The 2-3 months gives me time to research implants more as well and how to prepare for it if it comes to that. If the pelvic specialist and weight loss works, great. If not, then at least I'm at a healthier weight to handle to stress of surgery.
I wish I could find someone who had the implant while they were young, and how happy they are 20+ yrs later. Although unsure, it seems like young people are only doing this treatment more so recently (due to the increasing rates of young males with Erectile Dysfunction).
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samsung

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Arginine and cialis helped me with getting morning wood, night time erections and making it feel fuller when erect. There are a few younger guys on here with implants. Can't recall their names but one that is on the young side that comes to mind is xerohart. You might look him up.
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44 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 3 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TonySa

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Peace, yes implant size increases w revisions.  Google it and look on forum here for revision cases.
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.
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