FrankTalk.org

Friends,
Hope all's well. I'd be happy to hear people's experiences with unconventional treatments for ED, such as:
Pelvic Floor Therapy for Men/ED (most curious about this due to some pelvic pain)
Shockwave Therapy (somewhat curious due to reasonable prices if done at home, such as the phoenix device)
Stem cell Therapy
Priapus shot (P-Shot) Therapy
Red Light Therapy

Recommendations for where to buy or do any of them helps. I live in New York, but don't mind traveling for best treatment at better prices. While I have a decent job, I'll have to pay as insurance is bad. I'm willing to do that for better health, but don't think it's wise to pay a lot for something that's experimental and may not work.

Recommendations for good penile implant doctors near me is helpful, but good doctors that offer better prices far from where I live may be more helpful. The 1 good doctor I know in NY charges $30000, and since I hear implants last about 10 yrs on average, paying $30000 every 10 yrs is affordable to me for something so important, but it'll definitely hurt the wallet of a middle class man.

In short, I'm 33 and have ED. After seeing many doctors, cause of ED is uncertain to me but after doing an ultrasound, 1 doctor said I have arteriogenic dysfunction that was caused by trauma I don't recall, or I was born that way. I also read that more trouble with erections while standing and none-minimal morning wood are signs of venous leakage, both symptoms I have.

For treating ED, I've exhausted:
-Lifestyle changes
-Trying ED pills (high dose helped somewhat, but the high doses came with crippling back pain)
-TRT for ED due to low testosterone (did not help me with ED at all, so I tapered off)
-And injections (Helped but response wasn't predictable, didn't like having to give myself a shot every day while young, that the treatment is far from spontaneous,, that my doc charged $10 a dose, and it has to be refrigerated where family may find it)

So penile implant is on the table now if the unconventional treatments are not worth it.

There are plenty of posts regarding these "treatments." Use the forum search feature to find them. You won't see a lot of success stories.

p shot was a waste of money for me. IMHO it was temporary and scammy.

I haven't seen much success at all from guys who have had some of those treatments. At your age it might be better to just go for an implant instead of wasting money on "maybe fixes". See a good urologist, get an opinion on what might be causing the issue.

Old Guy wrote:I haven't seen much success at all from guys who have had some of those treatments. At your age it might be better to just go for an implant instead of wasting money on "maybe fixes". See a good urologist, get an opinion on what might be causing the issue.

Thanks for the feedback guys. Old Guy, you're probably right. I live in NY. Researching these forums, I see 2 doctor names near me that come up alot as recommended. I don't mind traveling for better prices, so I was wondering if there are any other great doctors people recommend that are cheaper? These implants only last 10 yrs average, so I'm trying to see if my fate is to pay $25000-45000 every 10 yr average for a great doctor.

I'm going to dedicate 1-2 months on pelvic floor therapy for men/ED, only because I do have pain in that area, and there are studies showing it can help for ED. If nothing, as hesitant as I am being only 33, I may jump to penile implant as it sounds like the best solution.

PeaceofPain07 wrote:
Thanks for the feedback guys. Old Guy, you're probably right.

Thank You. At 33 there is no reason to live without the ability to have an erection. Again before you spend more $$ on "maybe" fixes, see a good urologist. There is probably some underlying cause to your issue. As far as good surgeons, price should not the issue. You get what you pay for.

Old Guy wrote:As far as good surgeons, price should not the issue. You get what you pay for.

While I don't know the exact situation with penile implant doctors, I must disagree, at least with surgeons in some other fields. I had a prior unrelated surgery that a highly recommended good doctor in NY wanted $20000 for. Found a highly recommended doctor in another country that did it for $3250, and I am satisfied with the result of surgery. Some countries have highly qualified doctors, but lower cost of living. If there are any good penile implant doctors anywhere in the world for a better price than $30000 that I'd pay for in NY, please let me know.

Old Guy wrote:Again before you spend more $$ on "maybe" fixes, see a good urologist. There is probably some underlying cause to your issue. As far as good surgeons, price should not the issue. You get what you pay for.

Yup, that's been done. Think I've more than exhausted seeing enough doctors on the issue, including urologists (some which I researched for good reviews, and others that I just visited closeby). With the said, the cause of ED is unclear to me but 1 doctor may have been close. After doing an ultrasound, 1 doctor told me I have arteriogenic dysfunction that was caused by trauma I don't recall, or I was born that way. I also researched to learn that more trouble with erections while standing and none-minimal morning wood are signs of venous leakage, both symptoms I have. Also low T as mentioned before, but treating that didn't help ED.

Due to pelvic pain and reasonable costs, I will consider pelvic floor therapy for men/ED.
Plus I just learned that shockwave therapy at home is more affordable now thru a device called phoenix. Unsure but I get a feeling that shockwave is the lead runner in experimental non-conventional ED treatments above. I will consider that as well at the same time.
Plus Tadalafil
If that combo doesn't work, implants it is.

Well one thing to think about, IF you travel for another surgeon for a lower cost not only will you have travel expenses but then you need to travel back for follow up visits and any possible problems. That can get expensive.
From what I know if you have a venous leak you won't be able to maintain an erection, period.

How low were your testosterone levels before TRT?
How long were you on TRT for?
Did you notice any improvement in your morning erections after a reasonable time on TRT?

Low levels of testosterone for an extended period significantly affect nightly erections. They can become non existent. When this happens ischemia occurs in the penile tissues resulting in hypoxia (lack of oxygen). This eventually causes changes in endothelial function. NO synthase is compromised and smooth muscle in the cavernosal arteries and most importantly smooth muscle in the erectile bodies (corpus cavernosum) deteriorate.

We do not need to lose much smooth muscle in these areas before erectile difficulties start. Smooth muscle is replaced gradually by excess collagen(fibrosis).
Have you also tried long term low dose daily PDE5 inhibitor therapy? It has been shown to help reverse some of the losses mentioned above.
Pelvic floor issues can also impede blood flow, this is as you have mentioned worth investigating.

Arteriogenic erectile dysfunction is essentially as I have described above: endothelial dysfunction. Testosterone is essential for penile health once past puberty. DHT also plays and important role. Suddenly replacing T to normal levels will not magically restore erections. This process may take many months or even years as T is more important in the maintenance and rebuilding rather than the signalling of an erection. It plays an important role in libido, with DHT.
The loss of endothelial function and smooth muscle may have taken years to occur. It stands to reason it may take a long time to repair. It is far more likely that repair is possible in a young person rather than someone past 50.

As your thread is about unconventional treatments, I would research the chronic (everyday) low dosing of PDE5 inhibitors with regard to reversing the damage caused by oxidative stress and hypoxia in the trabeculae and cavernosal arteries. I have been doing this for 8 months and have noticed positive changes in penile sensitivity and erection performance even at my age. This therapy is now being recommended by some urologists as it has quite a lot of solid research behind it.
Combining it with TRT if your levels are low is IMO essential, or trying therapy to restore your natural T (preferable in all cases).
I have mentioned testosterone and its importance as you talked about having low T and trying testosterone replacement therapy.
I did not read how long ED has been an issue for you? Was there a time when you felt your erectile function was ok?
Who did your ultrasound, what type of ultrasound did you get? Did any of the other urologists you have seen do any Doppler testing?

Having issues with erections when standing can also be a sign of possible excessive sympathetic activity as well. This is another involved subject. Read my other posts if interested in this.
Venous leak or CVOD (corporal veno-occlusive dysfunction) is a multi-faceted condition, which can be caused by a complex set of ED etiologies. Essentially it is anything that compromises the effectiveness of the restriction of blood outflow from the emissary veins through the tunica albuginea. Loss of smooth muscle in the penis is just one of these etiologies. So when a doctor says you have a venous leak, he is using a very broad term to describe the condition. Science is still learning so much about the Penis!

Hi Simbarn,
Thank you for that detailed post. I think referring you to my 2nd post here would answer all/most of those questions:
viewtopic.php?f=6&t=14804&p=130786#p130786

For your convenience, I'll answer directly below.

Simbarn wrote:How low were your testosterone levels before TRT? Per the lab ranges, it was in the high end of low - low end of normal. Probably not ideal for someone in their 20s-30s.
How long were you on TRT for? 1-2yrs
Did you notice any improvement in your morning erections after a reasonable time on TRT?

Yes, but that was all. I did combine it with a low dose of tadalafil. Back at the time, the newfound morning wood gave me alot of hope, but the same problem was there where I'd lose my erection. Figured trying TRT for 1-2 yrs was enough, so I gave up.