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sonnyjim

So how do I get this sorted out? I mean, 10 months of this crap and it's got to the stage where I feel like I am going to do something crazy, I just don't know what yet. I can't speak to anyone about this, I wouldn't expect anyone to understand and it's too F^@$!ng embarrassing to tell someone your dick has shrunk to a ridiculous size (was like 4 and a half inch flaccid, same girth > barely 3.5 and thin and erection has gone from 6.5 x 5.5 to under 6 inches with about an inch less girth)

I feel ashamed that I can't pleasure my girl like I used to be able to.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Tychy

Definitely use VED, if you don't get nocturnal erections. Just to keep the tissue healthy.  

sonnyjim

Dont i need an erection in order for VED to do anything for me?

I cant even get a semi without a lot of porn and "masturbation" so how would that help me out?

I hate this crap before atleast i knew that i could satisfy my girlfriend and now i just suck in bed ;(

this is a really sick nightmare I swear.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

PeetyPeet

Yes, it's a nightmare, and there's no appreciation of this from medical pros and that's something that needs to change.

Okay, there's no easy way to say this - there is currently no cure for ED. I've never really heard of anyone getting back 100% what functionality they've lost. But you can do the following to help prevent things getting worse and maybe provide some improvement:

1. Regular VED - Some men need a semi, some do not. Read the protocol and experiment. Or give me a PM. Always be careful.
2. Take low dose daily Cialis, say 5mg. Your GP may be willing to write you a private prescription, or you can buy it fairly cheaply from https://www.riverpharmacy.ca/. Unfortunately, you will need a urologist's approval for an NHS prescription.
3. You could try gentle traction - there is some evidence this can help with erectile function. It may help you regain your size. Again, be careful.
4. You could try the following dietary supplements: Garlic, zinc, pomegranate, Omega 3, L-carnitine, L-arginine, Folic Acid, Alpha Lipoic Acid. You could also try L-citruline instead of L-arginine. Most of these are essentially good for vascular health and anything that is good for vascular health is good for penile health.
5. Give up smoking. I appreciate it isn't the cause of your ED, but it won't be helping now that you have ED. It's also a convenient excuse for your urologist/GP/whoever to point the finger and get you out of the door should you choose to approach them again. Don't give them that excuse.
6. Drink moderately. Eat wisely. Exercise. This will also be good for your mental health.
7. You could consider a penile MRI - this is seemingly the best assessment for erectile tissue health - but it certainly isn't perfect and isn't performed everywhere. UCLH in London do it. If you want some advice on how to get a referral outside of your NHS trust give me a PM.

Best


Peety
8.  

sonnyjim

I had the doppler done at UCLH, are these people good at what they do? I.e is it possible that because nothing showed on the doppler that I dont hate peyronies and there is something less or more severe causing these problems?

IF there was something to find would they hate found it on the doppler and if not why did i not get an erection from the injection?

I will try the things suggested to me but i am very worried because since i had the doppler it seems loike i have lost more size/eq
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Pfract

sonnyjim: it is appalling that you did not even had a proper examination, and yet, you are here freaking out without searching for proper information. Dude... Were you told to stimulate your penis after you had the injection? you are supposed to masturbate, but not ejaculate to give you the best erection possible. If you did not have an erection, you have to wonder: was the medication strong enough? what were you injected? caverject... alprostadil? bimix? trimix? .... how many units? this is the type of stuff you have to know, before doing whatever. Only with your penis fully erect, are you able to know exactly how the blood flow to your penis REALLY is, and if you have fibrous tissue or not.

And yes, i did a doppler with the best sexual medicine doctor there is, in California....

sonnyjim

So fibrosis wouldnt be seen if the penis was flaccid?

I also have white spots on the head of my penis so clearly there is a circulation problem somewhere.

Anyone think this could be a pelvic floor issue? Someone suggested this to me but ive never seen Anyone talking about pelvic floor causing lumps on the shaft.



33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Paolo

White spots are probably Fordyce spots, nothing to worry about I think.

Have you thought of heat packs or warm baths to get some blood flow going, it's basic I know but it would also confirm if your nervous system is giving you some stimulation along penis length.

Internal fibrosis wouldn't be seen in my opinion, I think I have internal fibrosis because my penis looks, with the exception of a dorsal (top) curve completely normal flaccid and erect. Some men have obvious signs of plaque that can be seen and felt, I do not, that's the thing with this sh!^^y disease, so to speak no two penises are the same  :(

Why not try and get a detailed blood test, that would include a serum testosterone test (free testosterone), a hassle I know but worth consideration perhaps  :)

Whenever you find yourself on the side of the majority, it is time to pause and reflect.

sonnyjim

They are not raised spots that isnt what i mean. It is more like when you press your finger into the palm of your hand, like a lack of blood flow.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Tychy

Fordyce only appear on the shaft and testicles, I know, I have a lot of them.

You mean a whitened area. This is definitely lack of arterial inflow. Reason? You'd need an angio MRI for that. And even then the MRI resolution may not be enough for such small vessels.  

sonnyjim

Is that likely to improve on its own?

Can i do anything to help it?

It sounds so fkn bad ;(
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Tychy

It may. Put a picture of the spot in the members only pictures board, if you like.

Otherwise I would go for Cialis, VED and maybe pentox (it should make red blood cells more flexible). Just everything that Peety said.

ESWT may help with angiogenesis (creation of new blood vessels).

sonnyjim

I can pay for Cialis and Viagra although its expensive but i cant get a prescription for Pentox because i haventbeen diagnosed yet and anyway i hear its almost impossible to get one in the uk anyway.

FML
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

LWillisjr

Quote from: sonnyjim on September 01, 2017, 04:55:22 AM
Dont i need an erection in order for VED to do anything for me?


NO, You don't need one in advance. The VED will do all the work. It sounds like you don't understand how a VED works. Read up on it more.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

sonnyjim

Thats the thing mate, i dont get an erection when i use VED. If i went in with a semi, id come out flaccid.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

lessor

Read the Pete28 s story, Ved isnt good in all cases. He said after Ved he was worse than before and it did worse his situation, and like you ,ved didnt get and erection to him, he said

"2. Use of VED
I  really don't apply to much pressure. I cannot create a total erection with it, only very slight semi-one before it's starting to hurt. Two times only five minutes at moderate pressure and i am totally impotent (really no spontaneous response anymore) the day after. And when the erection returns, it's softer than before. I really have the feeling that the VED worses my case. I dont get it. I dont know what i am doing wrong. Some other members also experienced this 'numbness' after using VED. It's clearly something that happens more. Which physical effect causes this numb, impotent feeling? Damage to nerves, tissue overstretched? Theoretically, you could aspect the use of VED pumps fresh blood in the chambers + the stretching of tissue is stimulated, so erection should be easier (in stead of more difficult) to achieve ?"

Tychy

I also can't get an erection with pumping without stimulating, but erection afterwards is easier to achieve.
But as the protocols say, you shouldn't get an erection with the device at all.  

Pfract

Why did i even bothered to reply to this thread? it's just ridiculous that sonnnyjim completely ignores all the important questions i have asked him. I quit answering bull.sh.it threads like this!!!

sonnyjim

Quote from: pfract on September 01, 2017, 08:30:27 AM
sonnyjim: it is appalling that you did not even had a proper examination, and yet, you are here freaking out without searching for proper information. Dude... Were you told to stimulate your penis after you had the injection? you are supposed to masturbate, but not ejaculate to give you the best erection possible. If you did not have an erection, you have to wonder: was the medication strong enough? what were you injected? caverject... alprostadil? bimix? trimix? .... how many units? this is the type of stuff you have to know, before doing whatever. Only with your penis fully erect, are you able to know exactly how the blood flow to your penis REALLY is, and if you have fibrous tissue or not.

And yes, i did a doppler with the best sexual medicine doctor there is, in California....

It was Caverject.

He didnt give me a normal amount he said because hs didnt want me walking around with an erection all day long even though i assured him that wouldnt happen.

I basically had a semi which was even a poor semi (how it used to be)

What i hate now is the fact that my flaccid has got so smsll that its ridiculous and difficult to even get a semi let alone erect.  
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

sonnyjim

I could even deal with the shrinkage if I could still get an erection but now I cant even get that. My flaccid is all lumps and bumps and basically I dont feel like it will get better...

Dont think im gonna be around for much longer the psychological effects of this have ruined me already.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Tychy

116 123 in the U.K. if you need acute help (I may over interpret things because of the other post).  

sonnyjim

If that is a number to call for help i appreciate it but since last november when this happened ive been through neverending hell. Not just from trying to explain to psychiatrists (who tell me its all in my head its not possible for your dick to shrink) having to explain to my girlfriend, who somehow hasn't noticed an obvious size difference (more so when flaccid but also noticeable erect) and the psychological effect of having been always up for sex with her, to now having to fake and pretend i am enjoying it when i cant even get properly hard with Viagra.

I understand we are all in the same boat here but last year this girl was THE ONE and sex was great, very intimate and now its like im hanging onto her like a thread all because of this condition, disease, or whatever (if i  even have it)

I know its wrong to say but at least if we had cancer we would know that sooner or later we were going to die - with this we are just sitting around hoping to die.

There should be better treatment for this and Pentox shouldnt be so hard to get in the UK if its proven to help people. I dont understand why more isnt done i mean ive went through this crap since last November and i still havent even had a diagnosis, its ridiculous.

Makes me wonder what i did to deserve this. I dont want pity im just annoyed that ontop of the pain it seems impossible to get an erection also.

Its pointless spending more cash on supplements that are supposed to reduce the size of the scar tissue because they do not work we might as well flush our money down the toilet rather than give it to sick people who prey on anxious people looking for resolutions like us.

Its just all about money

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

nowhereman

I would reread the thread and look at all the different things people have said. Over the last 13 years I have had to unravel my own dick problems. And Jelqing injuries, porn induced erectile dysfunction (PIED) and Chronic pelvic pain syndrome/tightness were all partially responsible for my symptoms. And that's just on the functionality front.... >:(
And now a surgery has left me in almost certainly worse shape than I was a number of months ago. So first thing, become calm and tread slowly and carefully.

You said you can get somewhat hard with porn, that means porn is having an effect on Erection quality. Maybe it's a small effect. But if you stop watching it and your erection gets 10% better. Well that's something. For me the erectile benefits of not watching porn are utterly transformative. So don't underestimate it. I love porn btw, this isn't some moral BS.
Hard Flaccid is definitely caused by pelvic floor issues. I argued that on Prostatitis - CPPS - Interstitial Cystitis Forum - Chronic Prostatitis CPPS Forum all the way back in 2006, before it had a name, and was shunned. But it can also somewhat be caused by injury/inflammation, in my experience.
I would investigate all those things. And just understand with a LOT of time. This stuff can heal. The most horrific nightmare in my life started when I really injured myself back in march 2013. I couldnt even touch a spot on my dick that swelled up for significantly more than 2 years. Thats right. erections hurt like a fu$% too. So hang in there things can get better.

PeetyPeet

Quote from: sonnyjim on September 05, 2017, 06:14:36 PM
Not just from trying to explain to psychiatrists (who tell me its all in my head its not possible for your dick to shrink)

Misinformation like this is appalling in my view. Rather than serve to reassure patients, it makes them feel like they're going insane. As we all know the penis can shrink as a result of a decrease in flexibility of the tunica albuginea due to fibrosis, and/or loss of integrity of the erectile tissue - and this is acknowledged in clinical guidelines.

When having moments of doubt about whether it's all in your head or not, bear in mind the following: no test is perfect.
1. Neither the MRI nor the ultrasound can detect vascular disease inside the penis. The veins and vascular spaces in and around the corpus Cavernosum are just too small.
2. While the MRI is the best instrument to look at tissue integrity, for the same reason as above, I believe one can detect localised pockets of fibrosis / wasting, but not the defused kind.
3. The penis needs to be 100% erect, and the vascular spaces to be fully expressed, to able to draw conclusive results. After many failed caverject injections I've frequently been told that actually the inject doesn't matter...well if so, what's the point? very silly.
4. I suspect human error is common. A busy radiologist will peruse your results. Will they have time to really think about your condition? probably not.

With the exception of no.4, all of these are acknowledged in clinical guidelines. In light of this I question whether it's ethically sound for urologists to make judgements on a patients' psychological wellbeing - which is essentially what they're doing when they tell you you have a psychological problem - and I hope to make this part of my documentary.

sonnyjim

Back again guys, dont know why as theres not much anyone here can do for me I guess we are all in the same boat, shrinking dicks for life!

Now i can no longer make my girl cum and did I also mention i have practically 0 sensation in my dick now, great.

IS this a sign that things are getting worse, do any treatments actually work or is this it?  
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Hontas

Quote from: sonnyjim on October 01, 2017, 05:37:38 PM
Back again guys, dont know why as theres not much anyone here can do for me I guess we are all in the same boat, shrinking dicks for life!

Now i can no longer make my girl cum and did I also mention i have practically 0 sensation in my dick now, great.

IS this a sign that things are getting worse, do any treatments actually work or is this it?

It could restore function and improve maybe try some oral supplements??

kovasis

sonnyjim,
As hard as it may sounds , but i dont would let the presure of "have to make my Girl cum" rule my World.
I was also on the Edge of loosing my relationship due to obsessive freaking out about my Condition.
Only thing I learned is that the more you get despaired and excited the worser your Situaition will progress (at least in your mind).

Ok I'm not suffering as severe as you from ED , but currently also only have firm Erections while using cialis and Sildenafil prior to Sex.

As mentioned in a couple of other posts I think that it is really important to EXACTLY determine what the Problem REALLY is , which means you can not
judge everything from only have one Ultrasound or one Injection with a weak Erection result.

All the other Examples you are talking about sounds like you're really stressed all the time, which is also not a good indicator to have and maintain a firm Erection.

Please dont get me wrong, I'm not trying to say that your problem is your Mind, but as long as you dont have a proper diagnosis everything is specualtion and every possible solution is anecdotal....

If i would suffer that severe i would do nothing else than find how ever a specialist who diagnoses properly and the decide what need to be done next...

Age 51
First onset of Pyronnies  June 2016
Indurations under the glans and at the base.
4 Years Stable
Daily use of 5 mg Cialis and 300 mg Pentox

NeoV

There is definitely hope to restoring your penis to a more normal shape or more like it was before.

Traction and VED are seriously effective, they are no joke. And yes, diet is everything. How healthy is your heart? if it isn't extremely healthy, your penis likely isn't either. The cause of Peyronie's is not scarring, it's the inflammation that occurs before the scarring. Your blood sugar should be low, get it down to 70 fasting and get your hba1c below 5. Get your triglycerides down, and never spike your blood sugar, never drink alcohol, and focus on taking it easy! Eat as many veggies as you can, you need antioxidants to beat this disease. Never lose hope man.

sonnyjim

I have no curve or bend, im not sure whether that is because or where the lump or scar is, whether I have peyronies or similar, i dont know.

All i know is that, it feels like there is little blood flow down there and a lot more so when im flaccid, it feels like I have lost what i used to have, a half decent flaccid size with some plumpness to it, now its constantly turtled, smaller and if i am lucky enough to be able to get erect it never feels full like before and takes a lot more time.

I always stretch and that has made no difference at all, its just stressful how a little lump could cause this much stress and so much difference to my dick.

I have an MRI coming up in a couple of weeks and if that shows nothing, like the ultrasound did, I dont know how I will react.

If this isnt Peyronies what else could it be?  
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

suicidecomingsoon

When it is a jelqing injury it is more likely to be a venous leak ..

sonnyjim

I also have white spots on the glans where blood is obviously not flowing to the glans normally... I dont know whether or not this will improve by itself but do any of you guys have this problem as well?

I am willing to try anything at this point but the numbness in my dick is just worrying, it seems to have gotten worse gradually since I had the pain last November.

So instead of pain I now have numbness

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Christopher1

Have you tried testosterone?

Sometimes testosterone can fix ED.
Snake Diet + 5-day fasts + pentox + NeoV's stretching routine + Mito Red Light. Curvature 99% gone.

I also used Todd Capistrant's "Fascial Distortion Model" to help my curvature. Start slowly.

sonnyjim

I dont think testosterone would help as my levels are pretty normal.

I rarely get morning wood, maybe one morning in about the last three months and it was weak, basically like a semi. Nothing can get me hard apart from 100+mg of Viagra Plus a lot of stimulation and this is with my.girlfriend who I obviously am very attracted to.

At this point I am not even living right, cant work up the motivation to do much... And really, if things dont or cant improve, I dont know how long I can live like this.

It wouldnt even be AS bad if I had my normal flaccid size back and had ED but my flaccid is also affected and constantly turtled up. It just feels empty.

What really are my options now that Viagra has stopped working?

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

james1947

sonnyjim

What you mean pretty normal?
The "Normal" range is huge and you want to be near the top as much as you can

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

sonnyjim

Hello guys, still no real improvements, I'm just getting worse.

200mg of Viagra doesn't make me get hard, without constant manual stimulation and if I stop, it goes down very quickly.

Flaccid size will not change, I am stuck in a state of constant turtling now, no matter how much traction I do or regular use of VED. I am not really sure what else I can do, does ED usually improve over time? It hasn't so far....

I have white blood spots on the glans and my flaccid feels tiny.

Blood flow issues?  
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

Jonbinspain

Sonnyjim;

Sounds like venous leakage for sure.


VED can help with that. It helped me to get and maintain strong erections after my surgery

PeetyPeet

Hi Sonnyjim,

Yes, Blood flow issues. Not necessarily venous leak, but blood flow all the same.

I strongly suggest you return to your GP, explain your worsening symptoms,  and request referrals for further tests, namely a cavernosography (to check for venous leak) and a penile MRI (which, albeit not perfect is the best instrument to check the integrity of the erectile tissue). You could also ask your GP for a low dose daily cialis prescription while you're there. They might not give it to you but it's worth a shot.

Don't be scared to disagree with them, or indeed any expert, if they start telling you a penis can't shrink...it can.

As someone else who has worsening and consistent symptoms, along with a constant battle with medical pros, I really sympathise with you. Drop me a PM anytime.

best

Peety

sonnyjim

I have had an MRI I'm just waiting for the results of it.

Surely something must show on an MRI?

Do I have any hope of treatment other than surgery or am I just dreaming?

I think I have already said it but I have white spots on the glans the type you'd get from lack of blood flow.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

PeetyPeet

An MRI scan can show if you have corporal fibrosis (scarring in the erectile tissue) or wasting of the erectile tissue (this is when the cells die off).

It can't show localised vascular disease in the penis as the blood vessels and vascular spaces of the erectile tissue are too small for the scan to detect them properly.

No test is perfect.

The white spots suggest a blood flow problem although I would expect your glans to be overall paler and smaller, rather than isolated white spots. If you haven't already shown these to a doctor I suggest you do so.

I should mention that if you overdo VED and/or stretching, it can cause temporary turtling. I do VED every other day as everyday seems to be a bit much for me.

Have had, or been offered the rigiscsan? (also known as the NPT test)

sonnyjim

No only an ultrasound and an MRI.

The ultrasound didn't show anything apparently there is noproblem even though I didn't get hard with the injection. Was just a very weaksemi.

The MRI must show something surely.
33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

suicidecomingsoon

I already told you, when you do not get hard with the injection, when you have soft glans after jelqing, it is very likely a venous leak, you just have to search the internet about other guys injured by jelqing and you will see that they are in the same situation like you, I know this is hard and hard to admit but if you want to know the truth is this, jelqing is a big lie and causes injuries as serious as this one.

If you can, get a caversonography or perhaps an arteriography even though they are not perfect either

sonnyjim

So is it likely that I am permanently impotent ?

33yo, single
severe ed caused by injury to cs, soft glans, lack of sensation
penile implant: ams lgx 700

DN

It still blows me away that men are unaware of the protocol for this type of situation. Must be because urologists are unaware of or unwilling to share with the patients the proper protocol.

Peyronie's patients who present with erectile dysfunction to a specialist are treated the same as any man who present with erectile dysfunction. The treatment is as follows:

1. Oral PD5E inhibitors (cialis/viagra), if you can have satisfactory erections then no further treatment of ED, may treat peyronie's curvature with pentox/xiaflex/surgery.

2. Injections, e.g. trimix. Not recommended for patients with peyronie's already as injections can worsen peyronie's. However, if you are satisfied with this treatment then no further treatment necessary.

3. Vacuum erection device, cock ring, muse suppository, combinations of pills/injections, etc. Not many men use this for any extended period of time, this is desperation mode.

4. Penile implantation. Choose high-volume implant surgeon if available. AMS LGX or TITAN device. High satisfaction, also corrects peyronie's deformity, erection on demand.

For those who did not get erection during their ultrasound injection, you may very well have a large venous leak. If you are not able to get satisfactory erections and sex life from pills or injections you need to bypass your urologists and consult a penile implant urologist. The implanter will address your situation and determine if you are a good candidate for implantation.

Look up the FT implant forum
Look up Dr. Eid in New York, he is arguably one of the world's leading implant surgeons.

WTF are you guys doing living years of your life completely impotent?!?! Get a penile implant.................. This must be ignorance due to having crappy  urologists and not thoroughly searching the internet. A high volume implant surgeon will not lose penis size.

PeetyPeet

In the UK one cannot receive any treatment without first being diagnosed. Medical practitioners take a 'hard evidence' based approach. For ED a patient needs to demonstrate that they have significant ED and a clear organic cause for that ED in order to be diagnosed. If this 'hard evidence' isn't there, you are diagnosed as having a psychological problem, by default. It's not an ethical way of doing things in my view, but there you are.

The NHS is good in that it's free, but patients enjoy much less control over their 'pathway' and it will be difficult for Sonnyjim to 'bypass' any urologists he's seen up to this point. Even if he goes private, it is often the same urologists he would see on the NHS, unless he chooses to go to one in another area of the UK. Besides, in going to UCLH Sonnyjim has already experienced the best ED clinic the UK has to offer.

He could, as you say, go abroad. But that's going to be very expensive.


Sonnyjim, in answer to your question, I would say it is possible that you are permanently impotent. As I've mentioned before, men who have non-psychological ED rarely regain full functionality. It all depends on the cause of your ED.


DN

What I would do if I had severe ED (not getting erect with 200! mg of viagra) for a year and could not have satisfactory penetrative intercourse for that time:

1. Try 20-40 mg Cialis
2. Get injections and administer them myself (e.g., trimix etc)

If neither of those work, as SonnyJim suggests, I would make an appointment ASAP, even if I had to jump through hoops, with Dr. David Ralph in London to move towards penile implantation.

If that is not possible I would save money, take out a loan, beg or borrow, and go see an implant surgeon in the US.

Eid and Kramer are ~27,000 USD
Karpman in California is much cheaper ~19,000 USD and is an excellent alternative to Eid and Kramer.

I would say though, if Cialis 20-40 mg and viagra 200! mg don't work then injections just aren't suitable for a young man and it would be a good idea to move towards implantation, however you get there.

Also, the US takes your 'hard evidence' based approach too. Sometimes it's too 'hard evidence' because private insurance doesn't want to pay for everything. If SonnyJim cannot provide an ultrasound or MRI showing scarring and/or venous leak he will run into road blocks. But with the confidence that Cialis and Viagra don't work then he will get there, I am aware of many others who have been implanted without a clear diagnosis of their ED.

At this point SonnyJim should stop being frantic and start taking the advice of these members and begin action.

PeetyPeet

Quote from: DN on November 29, 2017, 12:27:17 PM

If SonnyJim cannot provide an ultrasound or MRI showing scarring and/or venous leak he will run into road blocks. But with the confidence that Cialis and Viagra don't work then he will get there, I am aware of many others who have been implanted without a clear diagnosis of their ED.


Alas, in the UK, the ineffectiveness of PDE5 inhibitors is not considered sufficient evidence that one has organic ED. I speak from personal experience. I can barely get an erection on Cialis 20mg (over 20mg is considered too much for a single dose in the UK). UCLH's advice? We've found nothing on your scans and you can just about get an erection on 20mg cialis. Your ED is inorganic, come back to us when you think you might need injections'. Just completely baffling.

If Sonnyjim is able to demonstrate on an NPT Test (Nocturnal Penile Tumanescence) that his nocturnal erections are sub-par, he will be given access to treatment regardless of his MRI and ultrasound scan results. The problem is that NPT test uses a crude machine called a 'rigiscan' that cannot measure true rigidity and one doesn't need to demonstrate much functionality to be considered normal. Just one (semi) erection lasting 10 mins or longer is enough. The average number of nocturnal erections for healthy men is 3-6 a night, so it doesn't make sense.

TonySa

Maybe rig the rigiscan overnight on something else so there are no nocturnal erections in that case?
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.

PeetyPeet

Had I known more about the rigiscan before i did the test I might have tried that.

In my case a nurse woke me up at close to 1am to check I was wearing the device correctly. I suspect that if the rigiscan showed no tumanescence at all then it would be suspicious.  

DN

So you and SonnyJim are unable to have intercourse on the highest doses of Cialis (20mg) or Viagra (100mg) for a long period of time, over a year? And they are unable to identify through ultrasound any organic cause for your ED? Are they able to identify peyronie's scar tissue?

Again, I would try to schedule an appointment with Dr. David Ralph.

I would get a hold of some caverject or trimix injections and give myself those to see my response. However, I wouldn't want to do that for any extended period of time.

Then if I absolutely couldn't get a satisfactory erection with cialis or viagra and there was no way forward with UK health care I would save/beg/borrow/loan my way to an implant in the US. If money is an issue Dr. Karpman in CA is reasonably priced and world class (~19000 USD). You could email his office and arrange it with him.

I would imagine that after you already have an implant the UK heath care would consider revisions necessary and cover those in the future.

Its a hard road to walk down but personally I could not handle an extended period of time without being physically able to have intercourse.

cheeznips

Sonny jim what was your injury?

Can we see the results of your doppler?