Update on my corporal fibrosis following medication / treatment

[PeetyPeet]

Hi guys,

Just an update on my corporal for anyone interested and also my own records. Comments and thoughts more than welcome.

Age 36. Ed for 11 years. More severe since early 2015. Have been taking Cialis 10mg daily for 6 months and Potaba 12mg daily for 4 months. Also L-arginine and Pomegranate.

Positives

1. My condition doesn't appear to have worsened
2. I hang better and appear to have regained some length when flaccid
3. Extreme turtlehead experienced during aerobic exercise is less severe.
4. Some improvement in the glands, they have some more colour and are more engorged during erections (previously they would be soft, even when using Cialis).
5. These improvements appear to be permanent, i.e. they are still apparent if I stop taking Cialis, although not quite as pronounced.
6. I tolerate Potaba well - mild diarrhoea only side effect.

Negatives

Overall erection quality and ease of getting erection has not improved. Still require 20mg to get a reasonable erection ( pre 2015 10mg would surfice) and even then can lose erection during vigorous sex, if I have had a substantial meal a few hours before sex, or if I'm on my back.

To get a good erection I still need 20mg, daily l-arginine 4 g, pomegranate, to be hungover, and super horny.

Around Xmas I thought I saw some significant improvement. I was able to get nocturnal erections every night taking Cialis 10mg every other day rather than daily, but over January I seemed to relapse.

More recently I've started to use VED regularly, perhaps for a month and a half. But I started to notice the above improvements before I started VED. I've struggled to follow the protocol. My penis is so 'tight' when flaccid that the pump doesn't do much without my having to give my self a reasonable semi-erection first. This is lost after the first 'round', so instead I've found it helpful to pump, hold for 20-30 secs, withdraw, give myself another semi, and repeat x 10. A session takes about 45mins, but total time penis pumped is about 5 mins. My lifestyle means I can do this 2-3 times a week.

I'll update again in 6 months or so. Hope this is helpful to someone.

Best

Peety  

[Jonbinspain]

Hi P.P.

As I'm sure you're aware, Cialis alone won't give you an erection, you need sexual stimulation. It seems that your problem is more keeping an erection, rather than achieving one. Have you been checked for venous leakage?  

If you can afford it, it would cost £300-350, book an appointment with Dr Franklin Kuehhas at The London Andrology Centre. He will give you a thorough examination to determine what can be done to improve or cure the problem.  

[PeetyPeet]

Hi Jonbinspain,

Thank you, apologies for not being clearer. Yes, I had a check for venous leak way back in 2006. They induced an erection, injected dye, monitored it's flow and concluded that I do not have venous leak. Just to clarify, Cialis does need stimulation, but that can be the 'stimulation' experienced during REM sleep causing nocturnal erections, not just sexual stimulation. In my experience, the sexual stimulation can also be mentally 'turned on', not just physical (depending on the severity of your symptoms of course)

My ED in more detail:
1. I have problems both getting and maintaining erections. Without Cialis I do not get an erection at all, in any circumstance.
2. I do not get nocturnal erections without cialis.
3. Even when using Cialis I can lose erection if physical stimulation stops, during vigorous sex, and if I'm on my back
4. Even using Cialis getting an erection can take a while. It'is like the blood is pushing against some kind of barrier.
5. Loss of girth during erection

Other symptoms:
1. Turtlehead during light exercise
2. Lumpy / woodyness in penis that gets more apparent as you go up stem towards glands. At worst immediately underneath and behind glands.
3. Pale glands (until recently)
4. Generally shrunken flaccid (again some improvement recently)

Currently waiting to see Mr Minhas on NHS. Will consider seeing Dr Kuehhas, also considering getting a P-shot. Will probably wait until I've finished my Potaba prescription, which I'm having to pay for.

[Pfract]

No... Don't do proper tests to address the true cause of your Ed...

[PeetyPeet]

Hi Pfract,

Do you mean that I haven't had the right tests? Over the course of this 'journey' I've had the following tests, most in 2005 & 2006:

Venous leak test as mentioned
MRI to check for nerve damage in my back
MRI to check for vascular problems in my abdomen, pelvis and upper legs
Penile doppler x2 to check for scarring (in both these cases the erection-inducing drug did not induce an erection)
Diabetes and Testosterone level tests

All of which came back negative.

In June 2015 I saw a urologist who physical examined me and diagnosed corporal fibrosis based on my corpus cavernosa's inability to compress, and my long history of lack of nocturnal erections

I'm hoping to see Mr Minhas later this year who wants to do a Rigiscan and a penile MRI. If there are any more tests I could do, I'd be grateful for your advice.

[Kobe248]

[Admin - No need to make multiple posts]

Hi, this is my first time on these forums so I'm not sure if this is the right forum to discuss my problem.  So, about a week ago I had an incident with my penis. I had an erection and I decided to hold the bottom of my penis and and top part of penis and squeeze to make it look bigger. I don't know why on earth I did that. It was just spontaneous. Well ever since then my penis has shrunk. My erection before the incident was 7 inches and now my erections are 6 inches. I lost an inch. Yes my erections are still really hard so it has nothing to do with blood flow I think..Is it possible for it to get back to 7 inches? I'm struggling to understand the major mistake I made and falling into depression. Could this be a case of Peyronie's disease where plaque has build up to shorten my penis? If so how do i correct this?  Please any suggestions would be greatly appreciated .

[NeoV]

Potaba causes acute liver injury. That is really the only reason none of us take it.

Glad things are a bit better, why not use traction?

[Pfract]

PettyPeet.... should i really tell? i feel that i share my thoughts on this and people don't give a flying f...

[QuackAttack]

Peety,

You said that you haven't had NTE's and that may be a cause of your problem. Are you doing traction? Since I started doing traction, I have notice a significant increase in NTE's and stronger erections. Maybe traction would help. Just a thought.

[PeetyPeet]

Thanks everyone. Traction clearly has some very positive reviews! I'll look further into it.

Just to explain, the reasons I haven't considered it before: 1) I don't have 'classic' peyronies symptoms, 2) The corpus Cavernosum, being like a sponge, strikes me as quite a complicated organ. I was concerned what effect length-ways stretching would have, 3) I've read of at least one person who experienced ED after traction 4) In a discussion with Old Man, he was of the opinion traction did not help ED.

PettyPeet.... should i really tell? i feel that i share my thoughts on this and people don't give a flying f...

Pfract, I value your advice! I just wasn't sure what you meant. Please continue to give help!

Potaba causes acute liver injury. That is really the only reason none of us take it.

Thanks, that's worth knowing. I've also read of people suffering permanent headaches, bad diarrhoea, upset stomach, considerable loss of appetite. Thankfully, I haven't experienced any of these.

[Pfract]

In my honest opinion, and after everything what i have read how can one believe that starting traction would improve nighttime erections? during the time i spent on penis enlargement forums, i read at least three or four articles of folks who stretched their penis too much and hurt them selfs, worsening their ED or developing new onset ED.

https://www.youtube.com/watch?v=lLjtOQxQqgE

It's good that you have done some tests, but based on what i've read from you, you still don't know for sure what do you have. chech the video above. and this...

Erectile Dysfunction - International Andrology London

[QuackAttack]

pfract,

Before getting Peyronies, I had never heard of it nor of penis enlargement. Since that time, what I have seen from the penis enlargement crowd is that they are wearing their devices upwards of 12 hours a day. I wear mine 4-6 hours a day max and not more than 2 hours at a time. I can't speak about the physiology and how my NTEs have increased, they just have and my erections are firmer as well. That has just been my experience.

[PeetyPeet]

Thanks Pfract and QuackAttack

what I have seen from the penis enlargement crowd is that they are wearing their devices upwards of 12 hours a day.

Yes, it seems the penis enlargement crowd take things to extremes. I've heard of other bizarre and dangerous practices - holding one VED pump for 30mins, jelqing, and hanging weights off their cocks. I don't want a larger penis I just want a normal working penis! Were I to use traction I would probably do so in the evenings for 4hrs approx. I'll have to read more into it but I presume the tension you apply should only be mild?

Thanks for the links Pfract. It's nice to see ED being acknowledged as a condition suffered not just by the elderly. I experienced some ageism when I first approached doctors back when I was 24/25. Despite some pretty casebook symptoms, it's taken 10 years to get an acknowledgement that my ED is physiological, not psychological.

I think the initial urologist I saw is correct in his diagnosis of corporal fibrosis. I think I've exacerbated things by cycling a lot in 2014/2015, but it certainly wasn't the initial cause. Still, I'm going to pursue things with Mr Minhas and see what a dedicated expert has to say. He's a reputable guy -  Suks Minhas - London Urology Associates (apologies to the Mods if this is considered a commercial link), but if he can't do much for me I'll certainly consider International Andrology London.

[skunkworks]

In my honest opinion, and after everything what i have read how can one believe that starting traction would improve nighttime erections?

Anecdotal of course, but is human based evidence ever anything except an accumulation of anecdotes?

I personally had an increase in nocturnal erections soon after starting traction. The mechanism by which this happens? Who knows. Could be elongation of scar tissue via traction has decreased the impedance of blood flow. Could be something else.  

[PeetyPeet]

I should have asked this earlier - did any of you suffer ED prior to using traction or did it build on already reasonable erections?

[QuackAttack]

I did not have ED prior to starting traction and not even heard about it until I got Peyronies, which I had never heard of till I was lucky enough to get it. One of the things my URO said is you can develop Peyronies by having a weak erection. I don't know if I would say I had a weak erection prior to traction, but there were times when it would take a while to get it up and sometimes I would have to shift positions to increase my erection, which I think is how I developed Peyronies by not being in a strict missionary position. After my first visit to the URO, seeing the physician's assistant, I was given low dose Viagra because she said a weak erection could cause more damage.

[Steveo]

If you have a consistently small, hard flaccid penis look to blood circulation problems as well.  

I believe my endless hours of sitting in my chair hunched over my computer are partly to blame for this "disease" due to pelvic constriction and lack of blood flow.  I find when I go to the gym, jog, or otherwise get blood flowing, my penis hangs softer and longer and even erections are a bit bigger (temporarily).

Not to say you sit too long or don't exercise -- if you do have circulation issues it could be due to any number of physiological issues.

If it's true fibrosis without any aggravating factor like the above, then it would point to an autoimmune disease. An actual disease.

[Pfract]

Pettypeet. Did you know that cycling is a well recognized cause for arterial blockage and erectile dysfunction? I think I posted a video about that here. Nobody seems to care though.  

[PeetyPeet]

Thanks again everyone.

One of the things my URO said is you can develop Peyronies by having a weak erection.

I've certainly read that sex with a weak erection is more susceptible to trauma, and therefore Peyronies. Perhaps a weak erection can also 'spontaneously' result in peyronies, without any trauma, although I'm don't understand the process if that's the case.

If you have a consistently small, hard flaccid penis look to blood circulation problems as well.  If it's true fibrosis without any aggravating factor like the above, then it would point to an autoimmune disease. An actual disease.

I certainly believe I have blood flow problems, although I think they are localised to my penis. The lack of flexibility caused by the fibrosis and also the fibrotic tissue's inability to absorb blood in the same manner as healthy corporal tissue, means my corpus Cavernosum cannot engorge fully during an erection, and is considerably less saturated while flaccid.

An autoimmune response is an angle I've never considered before. I'll take this up with Mr Minhas. My view up to this point is that my lack of NTEs is simultaneously the cause and result of my corporal fibrosis. Back in 2004/5 when I first started experiencing ED, I kept an eye on my NTEs and didn't notice a single one in a two year period. If the penis isn't nourished by oxygen-rich blood with regular NTEs I believe corporal fibrosis will be the result.  And then it becomes a vicious cycle - Lack of NTEs cause fibrosis which in turn inhibit NTEs.

As to why I stopped getting NTEs....well that's the big question. I have a theory but it's pretty outlandish and has been met with derision by every professional I've spoken to up to this point.

Pettypeet. Did you know that cycling is a well recognized cause for arterial blockage and erectile dysfunction? I think I posted a video about that here. Nobody seems to care though.

Yes, I've also read this and agree with you. It's for this reason I believe my regular cycling in 2014/15 has exacerbated my condition and I gave it up in March 2015. It isn't the initial, nor root cause, of my ED however. I wasn't cycling at all back in 2004/5 and very little between then and 2014. I will look into whether I've caused any permanent vascular damage in the perineum, although I suspect any compression was temporary.