Looking for suggestions/advice

Anything goes when it comes to ED.
Graffy
Posts: 1
Joined: Fri Apr 19, 2024 5:10 pm

Looking for suggestions/advice

Postby Graffy » Sat Apr 20, 2024 5:34 am

This will be long, so I will try to keep it a short as possible.

I know more or less the exact cause of my ED. I have had my entire leg amputated including half of my pelvis. It is likely during this the blood supply to one side of my penis was sacrificed. Investigations are still being done into this but it's incredibly slow and every doctor I run into is reluctant to do anything without me pushing them towards it (which is why I need suggestions). Mostly this is because my type of amputation is so rare most doctors have never seen it before and want nothing to do with it.
How they put me back together is still a mystery, but they have either tied the blood supply on one side off, and just left things as is, or they have split the remaining blood supply in two and that supplies blood to the entire penis now. Either way, I only have half the normal blood supply.

This causes my erections to be on the weak side, definitely not enough for penetration but enough for masturbation. They are not difficult to maintain, but even slightly too much pressure on the penis causes me to lose the erection temporarily, it usually comes back a short while afterwards. They are also position dependant, they're strongest when sat up (which is difficult to do with half a pelvis) and weakest when lying down.
Things are however very inconsistent. Sometimes I'll get (by my standard) pretty great erections, other times not so much.

To date I have tried I believe every form of erectile dysfunction medication available in the UK. I have tried Viagra, cialis, spedra and levitra. All of these work to some degree, none of them work enough for penetration. They are also fairly inconsistent and sometimes work better than others.
I have also tried caverject upto 40 micrograms which I believe is the highest safe dose, and Invicorp (I believe it's called Bimix in most other places) also the highest dose available. Much like the pills, these do work a bit but not enough, and again the results are inconsistent. One thing I have notices with Invicorp is that for a day or two afterwards I have better erections even though the drug is only suppose to last for an hour or so.
From experimentation, I have found the best results from medication is to take invicorp and cialis and then usually the next day or two I will have decent erections which are good enough for penetration but simply do not stay hard enough after penetration (they will return after a minute or two but the physical motion of sex just causes the erection to be lost).

I have tried a VED. It works but not without it's own issues. Firstly, due to nerve damage just using the device is painful and using one of the rubber rings that come with it is likewise painful which is not ideal. Even ignoring the pain, the erections I get from a VED aren't that great. They don't feel natural, my penis gets cold and numb.

Implants have also been ruled out. My anatomy is simply too different now to make it worth the risk. Part of the inflatable devices is usually hidden behind the pelvis, which I only have half of. I also use a prosthetic leg and there is the risk that while walking a lot of pressure would be put on the implant, which would either cause pain, or risks damaging the device. If I have to choose between walking and an erection, I'd rather walk.

I have had a doppler scan and an angiogram. Though both of these took a whole lot of persuading on the part of my doctor. The doppler scan shows that in between each of my heartbeats there is still some blood flow in my penis, which is backwards (normally blood only flows when your heart beats). They theorized it was likely the blood flowing into my penis on the heartbeat, and then into the other side in between heartbeats.
I am still waiting for the results of the angiogram, this was used to map out my blood vessels and show in real time where the blood was flowing. I am still waiting for the results of this (again, my unique anatomy means most doctors can't make heads or tails of anything and they need to talk to several other doctors) but it is very unlikely this will lead to any kind of treatment.

This is where I am at today. My doctors probably will not do anything more unless I bring it up. Which is why I am asking if there is any kind of suggestions anyone here has? Any sort of treatment, medication, device and so on that may be worth exploring would help.

easymoney
Posts: 274
Joined: Tue May 09, 2023 10:28 am
Location: West Coast Fl.

Re: Looking for suggestions/advice

Postby easymoney » Sat Apr 20, 2024 9:34 am

A mallabble implant would be the best type for you more than likely. A simple surgery .. no moving parts or pump to have to put into your body.

User avatar
bldoink
Posts: 3721
Joined: Mon Apr 03, 2017 12:58 am
Location: Fl.

Re: Looking for suggestions/advice

Postby bldoink » Sat Apr 20, 2024 10:40 am

Graffy wrote:This will be long, so I will try to keep it a short as possible....
This is where I am at today. My doctors probably will not do anything more unless I bring it up. Which is why I am asking if there is any kind of suggestions anyone here has? Any sort of treatment, medication, device and so on that may be worth exploring would help.

Welcome to the forum. I wish you the very best. I pray you find some answers. Unfortunately, I have no other suggestions for you.
R.R.P 2011 Mayo Jacksonville, Dr. M. Wehle. Nerve sparing - damaged. C in margin. Radiation 2023, V.E.D, Viagra and PGE-1 (80mcg/ml) injections @ ~ 14 units. Originally Edex20, then compounded PGE-1 - cost. Inject. 12 yrs. It works. Treasure coast of FL.

Budward
Posts: 55
Joined: Thu Feb 01, 2024 5:12 pm
Location: BC Canada

Re: Looking for suggestions/advice

Postby Budward » Sat Apr 20, 2024 12:17 pm

Graffy wrote:This will be long, so I will try to keep it a short as possible.

I know more or less the exact cause of my ED. I have had my entire leg amputated including half of my pelvis. It is likely during this the blood supply to one side of my penis was sacrificed. Investigations are still being done into this but it's incredibly slow and every doctor I run into is reluctant to do anything without me pushing them towards it (which is why I need suggestions). Mostly this is because my type of amputation is so rare most doctors have never seen it before and want nothing to do with it.
How they put me back together is still a mystery, but they have either tied the blood supply on one side off, and just left things as is, or they have split the remaining blood supply in two and that supplies blood to the entire penis now. Either way, I only have half the normal blood supply.

This causes my erections to be on the weak side, definitely not enough for penetration but enough for masturbation. They are not difficult to maintain, but even slightly too much pressure on the penis causes me to lose the erection temporarily, it usually comes back a short while afterwards. They are also position dependant, they're strongest when sat up (which is difficult to do with half a pelvis) and weakest when lying down.
Things are however very inconsistent. Sometimes I'll get (by my standard) pretty great erections, other times not so much.

To date I have tried I believe every form of erectile dysfunction medication available in the UK. I have tried Viagra, cialis, spedra and levitra. All of these work to some degree, none of them work enough for penetration. They are also fairly inconsistent and sometimes work better than others.
I have also tried caverject upto 40 micrograms which I believe is the highest safe dose, and Invicorp (I believe it's called Bimix in most other places) also the highest dose available. Much like the pills, these do work a bit but not enough, and again the results are inconsistent. One thing I have notices with Invicorp is that for a day or two afterwards I have better erections even though the drug is only suppose to last for an hour or so.
From experimentation, I have found the best results from medication is to take invicorp and cialis and then usually the next day or two I will have decent erections which are good enough for penetration but simply do not stay hard enough after penetration (they will return after a minute or two but the physical motion of sex just causes the erection to be lost).

I have tried a VED. It works but not without it's own issues. Firstly, due to nerve damage just using the device is painful and using one of the rubber rings that come with it is likewise painful which is not ideal. Even ignoring the pain, the erections I get from a VED aren't that great. They don't feel natural, my penis gets cold and numb.

Implants have also been ruled out. My anatomy is simply too different now to make it worth the risk. Part of the inflatable devices is usually hidden behind the pelvis, which I only have half of. I also use a prosthetic leg and there is the risk that while walking a lot of pressure would be put on the implant, which would either cause pain, or risks damaging the device. If I have to choose between walking and an erection, I'd rather walk.

I have had a doppler scan and an angiogram. Though both of these took a whole lot of persuading on the part of my doctor. The doppler scan shows that in between each of my heartbeats there is still some blood flow in my penis, which is backwards (normally blood only flows when your heart beats). They theorized it was likely the blood flowing into my penis on the heartbeat, and then into the other side in between heartbeats.
I am still waiting for the results of the angiogram, this was used to map out my blood vessels and show in real time where the blood was flowing. I am still waiting for the results of this (again, my unique anatomy means most doctors can't make heads or tails of anything and they need to talk to several other doctors) but it is very unlikely this will lead to any kind of treatment.

This is where I am at today. My doctors probably will not do anything more unless I bring it up. Which is why I am asking if there is any kind of suggestions anyone here has? Any sort of treatment, medication, device and so on that may be worth exploring would help.

Hi Graffy,
I may sound like a broken record on this site but you could try pt-141 and Melanotan 2 peptides. They work a completely different way than the normal pills. They actually go into your brain and stimulate hornyness and erections. I take a bit over .2 Melanotan 2 with a Cialis and I get very good wood. Worth a try.


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