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Author Topic: erectile dyfunction for almost a year - pleas advice  (Read 1689 times)

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gobbler

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erectile dyfunction for almost a year - pleas advice
« on: June 06, 2022, 12:55:55 PM »

hello. for 9 months now I have suffered from erectile dysfunction. to make it short, with manual stimulation I can get a full erection. however, as soon is I take my hands off so to speak, within seconds the erection subsides. I have not had a single random erection in a year, I cannot recall the last time I had a nocturnal erection(actually I can and it was 9-10 months ago). that was before I took a hair drug that modulated my hormone levels. these are now back to normal however, my libido is there too.

personally I suspect organic etiology, I suspect that I have a venous leak. now I know its kind of a joke in young men to suspect this because it is such a devastating and final diagnosis and irreversible. however based on the symptoms it just makes sense. no touch erection do not work, it is easy to get but impossible to maintain an erection. when I have an erection and pinch the bottom of the penis the erection can be sustained longer indication that the problem is an increased outflow of the penis. I also have had and still have significant pain and discomfort on the left corpus cavernosum. when I have an ereciton is feels like on that side the blood is leaking out. I suspect there might be damage to the tissue and fibrosis to the smooth muscle cells. its like the penis does not expand properly anymore, as if the blood needs to be manually jerked in and the auto dilation purely by thought does not work anymore.

i had an urologist appointment 2 months ago. he did an ultrasound exam in flaccid state and told me that based on this exam, the tissue does look normal and homogenous and he could not detect and fobrosis or tissue alterations. he also did palpate it and found nothing either. he said I should come back in a few months if it does not improve and suspected that some of it is lingering side effects form the hormone therapy but expects it to go away.

now here is the thing, I cant handle this anymore. I have had Erectile Dysfunction for almost a year now. I do not respond to any pills I have tried, pde5 inhibitors do not work. I have tried abstinence and it did not work, only made getting an erection more painful, probably due to the lack of stretching as a result of loss of nocturnal erections.

i have tried VED therapy, pills, diet and exercise. my libido is fine, my hormones are fine but I have discomfort and pain in my left cavernous and maintaining an erection is utterly impossible. the thought of venous leak and non reversible damage, being life long dependent on pumps pills or implant is wearing me down additionally. I was initially calmed by my doctor telling me the tissue looks fine. but can you really tell in a flaccid ultrasound? after all that is why people do skat injection tests and then doppler to check for vascular Erectile Dysfunction. a normal grey scale ultrasound is not enough for this. so then I started to feel not being taken seriously enough. i can not have a relationship, I can not even masturbate properly(with an actually pleasant erection) or engage in any type of sexual activity that is enjoyable.

after how many months of suffering from this is it okay to actually demand further tests? am I expected to just tolerate this for 5 years and then get an implant after my penis is so destroy from all the lack of nocturnal erections? it is not normal, if I do not manually force it I can go without having a single erection for months.

my theory is that the hormone therapy injured my penis and cause alterations to the tissue that now manifest in a venous leakage. that is why I can have libido and get erections with manual stimulation but lose them immediately once this is discontinued. that is why I have no spontaneous or morning erections and why I have constant discomfort and pain in the left erectile tissue.

but either way I just want to know. I want to know what is going on, I feel a little screwed with this "oh but its nothing come back in a year" if its nothing why dont pills even work? if it was psychogenic surely it would be hard to obtain an erection instead of sustaining it. obtaining is easy, sustaining is impossible, there must be something physically wrong how can I find it out?

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GaussRifle

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #1 on: June 06, 2022, 02:50:13 PM »

I am mid 20 and very same situation as you. Did you take finasteride, the hair loss drug ?
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gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #2 on: June 06, 2022, 07:15:55 PM »

yes
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Ineedtosleep

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #3 on: June 07, 2022, 01:22:07 AM »

You took finasteride. So did I. If there haven’t been any morphological changes to your penis I.e. size, shape, etc. while erect, that is not a bad sign. The fact you are not having NTEs or MW is not good, but it’s most attributable to the finasteride. I would go take a look at the swolesource forum and go the the post-finasteride sub forum. There you will find accounts from many men like yourself  who completely recovered doing the protocol laid out on that forum. I did it, and I attribute my quality of life today 100% to CDsnuts protocol. It demands a lot and consistency, but it’s worth it and it works. Size will return when erections do. It might also take some physical therapy like VED/traction to attain old size 100% too.
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25, Peyronies Disease from Finasteride in 2019 - Overcame PFS ~2 years - Am focused on preventing size loss/regaining size

Mikel7

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #4 on: June 07, 2022, 05:59:24 AM »

I will add my 2 cents here. I have been on full TRT for 18 years now and yes finasteride is a nasty drug and can do a lot of damage in some men. You say that your hormones are back to normal but are they a high normal or just in the ranges given?  There are very few Dr's who know how to treat an individual with hormone problems - I know firsthand.  The one hormone that should be at the high end is your DHT.  This is what gives your penis the health and erections needed. Also did your Dr check your estrogen levels? Especially your E2 Estradiol?  Your prolactin levels are also a key player too.
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Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #5 on: June 07, 2022, 10:34:42 AM »

I will add my 2 cents here. I have been on full TRT for 18 years now and yes finasteride is a nasty drug and can do a lot of damage in some men. You say that your hormones are back to normal but are they a high normal or just in the ranges given?  There are very few Dr's who know how to treat an individual with hormone problems - I know firsthand.  The one hormone that should be at the high end is your DHT.  This is what gives your penis the health and erections needed. Also did your Dr check your estrogen levels? Especially your E2 Estradiol?  Your prolactin levels are also a key player too.

thank you for your input. they are as they were before I took finasteride and they are the same level than at a time I had perfect erections. they are not "high" at 580ng/dl for T and 19 ng/dl but the are mid range and free T is mid range for my age as well. I do not think I have a hormonal problem because my libido has returned to normal. the Erectile Dysfunction is purely of physical nature, I can get an erection but then I have actual nauseating pain in the left erectile body and the erecton subsides. I can feel the blood leaking out. its a disturbing feeling. I have had psychogenic Erectile Dysfunction in the past and it is NOTHING like this. with psychogenic Erectile Dysfunction often times it is hard to even get an erection and you have night time erections. I did stamp test and all that crap, I have not had a nocturnal erection in 5-6 months. I think I have sustained an injury to the corpus cavernous.

i also saw two hormone specialist and they say my blood work is fine.

on finasteride my estradiol was double the normal values, I even had an itch in my nipples which could have been an onset of gynocomestia. however these have also returned now and the itch is totally gone. the only thing that is not gone is the severe Erectile Dysfunction that is completely unresponsive to 5/10/15mg daily Cialis.

i do not agree that DHT should be on the high end. DHT depends on the expression of 5alpha reductase in various tissues and cannot be influenced. the vast majority of specialists do not even measure DHT because free T is where it is act and DHT can be gauged at around 10% of total testosterone if you do not have a mutation of the 5AR gene.

also before fin I had DHT levels in the bottom 20% and my erections where perfect. so clearly normal DHT is enough. normal of course is not what you have on finasteride which suppressed about 70% of it and gave me female levels of DHT. however this has gone back to normal as well. the only thing that has not is the erectile function
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gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #6 on: June 07, 2022, 10:45:23 AM »

You took finasteride. So did I. If there haven’t been any morphological changes to your penis I.e. size, shape, etc. while erect, that is not a bad sign. The fact you are not having NTEs or MW is not good, but it’s most attributable to the finasteride. I would go take a look at the swolesource forum and go the the post-finasteride sub forum. There you will find accounts from many men like yourself  who completely recovered doing the protocol laid out on that forum. I did it, and I attribute my quality of life today 100% to CDsnuts protocol. It demands a lot and consistency, but it’s worth it and it works. Size will return when erections do. It might also take some physical therapy like VED/traction to attain old size 100% too.

thank you for your comment. the way I understand it is, the hormones are important as signaling molecules and they promote expression of nitrogen oxide synthase which converts arginine to nitric oxide, a signaling molecule that is release form axon terminal and endothelial cells in the penis to the smooth muscle cells which then relax promoting blood flow.

so theoretically when now my hormones are restored there should be no disruption to the signaling chain and it should work just fine.

the only that that I can imagine would be the cause is actual degeneration of the smooth muscle cells, atrophy aptosis and conversion to fibrotic tissue, remodeling. this should then show up in a grey scale ultrasound based on my understanding.

what molecular pathway could be impacted when the Erectile Dysfunction does not subside. I do not think it is a neuronal problem since the signaling is there-getting an erection is somewhat easy.

where it fails is when the penis swells and there is no constriction. normally the erectile bodies press against the tunica albuginea and the venous walls, constricting them and that is knows as venous occlusion. this does not happen in my cause. I have pain deep inside the penile tissue and my guess is that there has been some remodeling that prevents this occlusion from occurring leading to venous leakage.

its is not an issue of desire as it is for many that have PFS, it is a matter of mechanics, hemodynamics, that are not working anymore. and I do not think this can be fixed by any protocol.

i also think the grey scale flaccid ultrasound is not conclusive, otherwise why would anyone ever do skat injection tests if a venous leak could be identified with flaccid ultrasound and no injection.

you have to understand I have not taking finasteride for 6 months. my DHT has been back to normal for months. I do not see anything that would make sense to cause the Erectile Dysfunction other than irreversible tissue alterations. they might not be severe of deep inside the tissue but they do cause vascular erectile dysfunction.

the pain in the erectile body is a strong warning sign as well. it feels inflammation, like a bruise but deep in the tissue. I fear this is the ongoing remodeling of healthy tissue to useless collagen.

i will look at the protocol even though I regard it is kind of unscientific
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Pfract

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #7 on: June 07, 2022, 12:27:19 PM »

Gobbler: say no more. Check out this link when you can: https://youtu.be/kzb5PJBoawA there are more videos there and you should google ''post finasteride syndrome''.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7231981/

https://youtu.be/-gudeMHoWpw

https://pubmed.ncbi.nlm.nih.gov/32317131/

I am unsure how to approach this but it is a very difficult thing to address.

gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #8 on: June 07, 2022, 01:43:49 PM »

Gobbler: say no more. Check out this link when you can: https://youtu.be/kzb5PJBoawA there are more videos there and you should google ''post finasteride syndrome''.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7231981/

https://youtu.be/-gudeMHoWpw

https://pubmed.ncbi.nlm.nih.gov/32317131/

I am unsure how to approach this but it is a very difficult thing to address.


thanks for your input. I have of course seen and read all this already.  thats the sad thing, it did not benefit me at all. most doctors do not believe in PFS and it does not help that it is such a lovely defined condition and everyone who says they have it has different symptoms with no obvious disease markers. I do thus not think that it can exist as a condition. it is just an umbrella term for people who have all kinds of negative persistent effects from the drug. I presented myself to the doctor and he only did a grey scale ultrasound and said it looks fine.

in my opinion he should have done an injection and doppler ultrasound. I do not understand how it is acceptable for have Erectile Dysfunction for an entire year as a mid 20 year old and never be told the cause for it. you have to suffer and deal with the uncertainty which is the worst. if I just knew what it is I could move on but I have zero clue. everything massively points to a venous leak in my opinion. I should also say that on the left side where the internal penile pain is I have significant reduction of girth and volume. the tissue is not expanding properly anymore. if the doctor did not say tissue looks fine I would assume massive amounts of scar tissue in that area because thats what it looks and feels like. I dont know what to do.

what should I do? literally nothing works. I have tried every pill and device there is. for how long must I tolerate this to get a proper diagnosis?

in my case I have none of the symptoms most with PFS people have. my libido is fine, I have no depression or other cognitive effects(I am severely clinically depressed but not from the finasteride but from the peyronies and the Erectile Dysfunction and other things), my hormones are intact

what I am trying to say is, if men have persistent sexual dysfunction after androgen deprivation therapy for prostate cancer, nobody would call that post androgen deprivation syndrome. it is in act just a result and consequence of the lack of androgens on the body. and so it is with finasteride. I think its just the consequence of modulating hormones, its not an actual condition. in the end it does not really matter though. I do not have PFS; I have erectile dysfunction and peyronies disease. now that my hormones are normal again it does not really matter either way whether I have the Erectile Dysfunction from an injury or from androgen deprivation it does not matter. if finasteride caused tissue damage its not PFS that must be treated but vascular erectile dysfunction. PFS is something entirely different in my opinion and I would not say that I have it
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GaussRifle

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #9 on: June 07, 2022, 07:15:54 PM »

Gobbler, I would say I am in a similar spot after taking finasteride. The catch is I only took it for 3 days. I have a peyronies plaque in the underside that feels like it restricts me , and made my penis curve more. I have narrowing in that area. Either way, I really like how you put out all the details about penis tissue and loss of smooth muscle cells and conversion to fibrosis causing venous leakage. What I did get done was an ultrasound and blood flow analysis, I do not seem to have a venous leak as the inflow and outflow were well within normal parameters. I do lose my erection if I stop stimulating my penis manually within seconds, but I was always kind of like this, I don’t know why. Moreover I do get long nocturnal erections, especially with daily 5 mg tadalafil. I have no idea if this is normal. Some people tell me , some men need constant stimulation to stay erect during sex and that it’s normal whereas other tell me , it’s not normal. Either way, I’m confused.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
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gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #10 on: June 08, 2022, 03:15:12 AM »

I do not think it is normal to lose the erection within literal seconds. before all this I could maintain an erection purely by thought for tens of minutes without any stimulation at all. so even if it could be normal for some men I do not consider it to be normal for me because I used to not be like this. I think if you have long nocturnal erections that pretty much rules out venous leakage or any abnormalities with the hemodynamic process of the erection itself. it then seems to be more of an arousal problem but I honestly do not know. its so strange that everyone is affected so differently by this. do you also have the penile pain? I see that you got a doppler ultrasound done and I want to do it too. I did get a normal ultrasound and no tissue abnormalities were found there but I wonder if that is even accurate enough to detect such a thing, after all if it would, nobody would have to do injection tests anymore? I do not think you can see venous leak on a flaccid grey scale ultra sound. I am confused too
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chrisaaa7

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #11 on: June 08, 2022, 04:11:07 AM »

Hey Gobbler, yeah I would recommend getting a Doppler done, from the Doppler you would be able to tell if there is a veanous leak or not. If there is one then you would know that an implant is really your only option. If not then you can continue to search what else it could be. I would do it sooner rather then later just so you know the result and not always thinking about it. Best of luck to you. Keep us updated.
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Saw Urologist at USC who handles Peyronies alot and he does not believe I have it. Symptoms: soreness in flaccid state, glands do not engorge, 2 very small. indents, slight girth loss( last 2 might be mental),Erectile Dysfunction for 2.5 years

gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #12 on: June 08, 2022, 04:36:10 AM »

I wanted to do one. I was seeing a specilist in androglogy and very reputable doctor 6 weeks ago. I told him about my story and finasteride usage. he suggested that sometimes it can take many months for side effects to disappear. he then did a careful physical examination, first palpation (because I also have a deformity indentation and peyronies in the past) and then an ultrasound of the flaccid penis. he said to me that the erectile tissue in the flaccid ultrasound looked healthy and that he could find no abnormalities. he assured me that my erectile function will soon return.

that was 6 weeks ago and it has not changed for the better since then at all. I do not understand how this could be when my hormones are normal and in his opinion the tissue is not damaged and I have no sensation issues so no neural issues either, what is it.

i also still have the pain in the erectile tissue, a deep inflammatory pain. i am not responsive to any PDE5i at all, its like my body does not process them even though I know from the past I am a responder (before this all they worked very well for me)

so my guess is that a flaccid ultrasound is not enough to detect it, he was of the opinion that it is enough however and that an injection test is too invasive at this point in time. but he offered I can come back if I still experience problems which I will. I think his line of reasoning is that with venous leak there needs to be some tissue damage that should be seen even in normal ultra sound? I dont know. I was initially relived by what he said but spending half a year with erectile dysfunction with no real explanation is messing me up so if it is not a physical cause I want to rule it out as soon as possible for the sake of my mental health like you said.

I really would not get an implant though. my glans and corpus spongiosum do not inflate and they would not do so with an implant either. so I would be let with a half working penis and an irreversible surgery done. I would not be satisfied with that.
I thought why do they not implant the corpus spongiosum but I realized that it would be impossible because it is so narrow and the urethra is passing through it probably causing all sorts of issues. most of my penile girth now is coming form the corpus spongiosum which is kind of unnatural but without it my dick is kind of useless anyway and then it makes more sense to wait 20 years for tissue regeneration than do an implant that will exclude me from any regenerative approaches in the future.
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Mikel7

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #13 on: June 08, 2022, 06:19:30 AM »

I still question your hormone levels. You say you are in your mid 20's.  So did you actually have lab work to substantiate a baseline level before doing finasteride? Your mid range levels that you have are considered  low for someone your age. You should be at the very upper end of all of the ranges. Total testosterone is a useless test. I also question when you say you saw "hormone specialists" as there are not a lot of them around. I still think you should not discard the possibility that your levels are not high enough for someone your age. Just trying to help.
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Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #14 on: June 08, 2022, 06:39:46 AM »

i have done two baseline hormone panels before I took any medication where I got these values. that was the baseline. for some odd reason on finasteride my free T was halved and estradiol above range. even tho finasteride usually increases total T mine was lowered as well. probably did something with my conversion to estradiol which explains all of this.

 then 3 weeks after I stopped all those values where back to baseline. the libido followed shortly after, the erectile function never recovered. I was on it for 4 months and got side effects after 1 month but continued in hopes they would subside and because I was depressed about baldness. I did get free T measured and it was perfectly normal for my age at 19ng/dL, I never had any problems with it before, why would I now with the same levels?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4190174/

if you look at figure 5. mine are 20nmol/L which is actually in the upper range apparently. I saw reputable endocrinologists.

thank you for your input nonetheless I appreciate that but based on what I know and the results that I got in these tests I do not think it is a hormone problem, I think it is a problem of the tissue or something other like a neuronal issue but I dont really now.
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Pfract

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #15 on: June 08, 2022, 11:23:24 PM »

I wanted to do one. I was seeing a specilist in androglogy and very reputable doctor 6 weeks ago. I told him about my story and finasteride usage. he suggested that sometimes it can take many months for side effects to disappear. he then did a careful physical examination, first palpation (because I also have a deformity indentation and peyronies in the past) and then an ultrasound of the flaccid penis. he said to me that the erectile tissue in the flaccid ultrasound looked healthy and that he could find no abnormalities. he assured me that my erectile function will soon return.

I can believe that. PFS doesn't affect tissue from my understanding so why would it be affected?
Quote
that was 6 weeks ago and it has not changed for the better since then at all. I do not understand how this could be when my hormones are normal and in his opinion the tissue is not damaged and I have no sensation issues so no neural issues either, what is it.

It seems that you have read a lot on PFS by now. It must be very hard to understand the ways in which finasteride messes up with your body and eventually ends up causing such damage. But one most think that it is not just hormones affected?
Quote

so my guess is that a flaccid ultrasound is not enough to detect it, he was of the opinion that it is enough however and that an injection test is too invasive at this point in time. but he offered I can come back if I still experience problems which I will. I think his line of reasoning is that with venous leak there needs to be some tissue damage that should be seen even in normal ultra sound? I dont know. I was initially relived by what he said but spending half a year with erectile dysfunction with no real explanation is messing me up so if it is not a physical cause I want to rule it out as soon as possible for the sake of my mental health like you said.

You need to try to find an andrologist or doctor, maybe even a medical practice that deals with PFS mainly. Looks like you are going to random docs trying to get help? But i may be wrong.
Quote

I really would not get an implant though. my glans and corpus spongiosum do not inflate and they would not do so with an implant either. so I would be let with a half working penis and an irreversible surgery done. I would not be satisfied with that.
I thought why do they not implant the corpus spongiosum but I realized that it would be impossible because it is so narrow and the urethra is passing through it probably causing all sorts of issues. most of my penile girth now is coming form the corpus spongiosum which is kind of unnatural but without it my dick is kind of useless anyway and then it makes more sense to wait 20 years for tissue regeneration than do an implant that will exclude me from any regenerative approaches in the future.

You do realized that you can't predict exactly when new Erectile Dysfunction treatments (or cures) will be available in the future?  Also... Your penis not having a residual erection and you getting an implant put in is no impediment for it to work alright.

gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #16 on: June 11, 2022, 07:18:13 AM »

so with PFS, it is not clearly defined what it entails. to me PFS just means effects of finasteride that continue post cessation. they can be hormonal or physical affecting tissue. there is a study by Dr Irwig suggesting long term finasteride administration can lead to corporeal fibrosis which leads to veno occlusive insuffiency and thus venous leak. in my case I feel fine in every aspect just the Erectile Dysfunction is the only issue. if PFS was an actual syndrome I think I should have symptoms more in line with what other experience (low androgen symptoms, depression or fatigue etc. ) however these symptoms seems to be different in every patient.

i also have pain deep in the penis and I cannot stop thinking that there is some messing with the tissue going on. I have a theory of what is happening but I think no doctor would take it seriously. I think the lack of androgens has aged my tunica albuginea and made it more flappy so that it cannot compress the venes anymore during an erection leading to venous leak. that explains the diffuse tensions on the left side of the penis, the internal pain in the penile tissue and the fact that I can get an erection but not at all maintain it. as soon as it has built up fully it disappears. when I put on a ring or compress my penis at the bottom the erection stays stable. this proofs inflow is not an issue but outflow is. if my Erectile Dysfunction was anxiety or low androgen driven the smooth muscles would not expand and I could not get an erection at all however this is not the case. this would also explain the negative ultra sound, they could not find a scar that causes the indentations that I have so why would they find diffuse atrophy of the tunica which I assume would be even harder to detect?

"Looks like you are going to random docs trying to get help? But i may be wrong."

you are indeed wrong. I actually put in a lot of work in doing research on the doctors that I consult. I do not go to random doctors,
those who I have seen have all been andrologists with a specialization in sexual medicine and in particular peyronies disease. one of them has done the first and only clinical trial on xiaflex treatment and the main investigator.

i do not know what to do rn. the most sensible thing seems to again consult the androgist, explain my suspicion and ask for a doppler injection test to either verify my suspicion or finally clear my head of it. .

in fact I would much much rather have PFS than venous leak. because people recover from the former all the time however the only solution for the latter is an implant. pfs sounds much better to have to me
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gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #17 on: June 11, 2022, 03:10:30 PM »

I really feel left in the dark with this however. when my doctor says "there is no issue with your penile tissue in grey scale ultrasound" but I continue to have these issues and actual pain induced by tension inside my penis for months after, how long until I revisit them and ask for more accurate albeit invasive tests? how long should I be left in the dark? I understand that the unchangeable must be accepted but how can one accept something that is so cryptic, that one does not even know what it is, what is going on? the uncertainty is having a significant impact on my mental health, I think id better if they just told me that its a venous leakage caused by my atrophied tunica albuginea or something instead of just saying "we cannot see anything" even though the grey scale ultrasound in flaccid could not even detect this problem and is thus not used in diagnosis of Erectile Dysfunction.

I get prescribed the PDE5i tadalafil and he suggested this should work fine but I am not responding to them at all which is extremely worrisome because in my opinion the only reason why someone might not respond to these drugs is organic issue, be it neurological or structural, vascular, whatever but it needs to be something fundamentally wrong on an organic level as long as one is not severe hypogonadal.

so I ruminate a lot about this and I think this needs not be because they could just do a simple 30 min test to stop the anguish. I am a little mad that the doctor does not understand this mental conflict and just gives me the test because they deem it unnecessary. what should I do then?
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gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #18 on: June 13, 2022, 03:01:17 PM »

I take 10mg of Cialis every single day. I am in my mid twenties and completely impotent. without knowing what it is it is impossible for me to work with it in therapy. how could I accept something that I do not understand. the uncertainty is completely killing me rn. I wake up, completely limp. if I did not actively try to get an erection I would not have had one at all for half a year. and still nobody gives a [email protected]< about it. a doctor could take so much unnecessary suffering if they just did the right tests. I know that vascular Erectile Dysfunction is NOT diagnosed with a flaccid grey scale ultrasound. I have almost everyday pain in the erectile tissue of my penis. that is not normal. I am almost certain that this has something to do with the Erectile Dysfunction. probably some severe remodeling of tissue and atrophy going on due to the severe lack of nocturnal or any type of erections.


i do not know what I should do. my dr said Cialis should fix it but after 2 months on it it has not changed a thing, there is literally no difference between taking the pill and not. I could not tell. I had my bouts of psychogenic Erectile Dysfunction in the past but with this drug it was insane how much it made a difference. now I am a complete non responder.

I would almost bet that this is a case of organic Erectile Dysfunction. but the only people that could clear it up want that I suffer with the uncertainty.

my doctor said about the indentation "I should try to have sex and see if it disturbs me". I could never have sex. how? I cannot even evaluate the indentation because I cannot have an erection. the fact that he assumes I can just have sex like its nothing shows to me that he really does not understand the severity of it at all. on the IIEF-5 I get almost zero points which means severe Erectile Dysfunction. during a semi erection I have significant pain in the left erectile body. is that not alarming? pain within tissue almost always means something is going on with said tissue.

I came to the conclusion that you basically have to credibly say to the Dr that you are about to harm yourself because this has such an impact to you, only then will somebody act. otherwise nothing happens and you get sent home with a bunch of pills that do not work
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GaussRifle

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #19 on: June 16, 2022, 09:09:44 PM »

Gobbler, it is time for you try out one more thing based on my advice. Try out mechanical traction using RestoreX. It will atleast prevent or inhibit any remodeling to collagen. Studies have shown that mechanical stress on penile tissue produces enzymes that prohibit remodeling to collagen and even helps break down collagen. Moreover, RestoreX studies have shown that, the eretion quality is kind of better after doing traction for a few months or weeks. This may have to do with any underlying scar that is remodeled in a beneficial manner to allow blood to flow more naturally and easily.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
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Re: erectile dyfunction for almost a year - please advice
« Reply #20 on: June 17, 2022, 02:48:23 PM »

GaussRifle, I have thought about it. what is preventing me from doing this right now is reports from people like Bud Luck who report worsening of their indentation and hourglass deformity by doing traction. my urologist also said, if you have a wound, are you going to really pull it apart? another urologist argued with the wound healing and traction and that it should leave the tissue more elastic. they all say something different. what I think is the cause for my erection issue is the contraction of the tunica albuginea. I have this circumferential ring under the glans that constricts the penis presenting expansion and proper trapment of blood I think. I have the classic hourglass. painful erection for a year now, its actually insane how painful they are sometimes and how little my doctor realizes this. he looks at the picture and says there are worse cases and that indentations do not prevent penetration. however I think hourglass is worse than curvature. its extremely uncomfortable. its like the blood wants to flow in through the arteries but the tunica cannot expand thus prevent it from traveling along above that. my glans is thus always soft. often I have pain in flaccid too. today I woke up without any erection but significant pain in the erectile tissue, I actually took a F^@$!ng pain killer today before I went to work. I just do not want to make it worse
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Re: erectile dyfunction for almost a year - pleas advice
« Reply #21 on: June 17, 2022, 04:50:06 PM »

Gobbler, the pain actually eases if you do traction ovwr a few months. I had the same pain that you described. Doing traction for almost a year and now pain is less... now pulling my penis through traction feels like stretching a muscles that should have been stretched. The pain becomes less and the feeling of it being stretched feels good.
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26 year old
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Re: erectile dyfunction for almost a year - pleas advice
« Reply #22 on: June 17, 2022, 05:49:22 PM »

what about the erectile function?
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gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #23 on: June 20, 2022, 05:33:52 PM »

.
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Re: erectile dyfunction for almost a year - pleas advice
« Reply #24 on: June 20, 2022, 07:32:03 PM »

Erectile function has a minor increase. For some reason I notice more night time erections on the days I do traction.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
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Re: erectile dyfunction for almost a year - pleas advice
« Reply #25 on: June 21, 2022, 01:31:03 PM »

so have they found any fibrosis or plaque during your examination? in my case they actually did not and I am trying to figure out how this is possible. there is a visible deformity indentation and in half erect a severe curvature, there is tension pain across the entire left side which makes me suspect some diffuse tissue abnormality across the length. I cannot have an erection that does not feel uncomfortable, it is like the tissue tries to expand but cannot due to the narrowing and less elastic tissue. I did some research in the past and this type of erectile pain is often described by transmen undergoing HRT who report this after androgen deprivation and estradiol therapy. however I am not on any of these treatments obviously yet it really makes sense based on the description that there must be some kind of fibrosis in the tunica induced by either misuse or a skewed up hormonal profile or the absence of nocturnal erections who's jobs it is to stretch tissue, oxygenate it and prevent atrophy. after half a year without any nocturnal erections my pain has increased.

I wrote to Dr Trost about this and he said the only instance where pain is present in peyronies disease is either in active phase when inflammation and tissue remodeling actively occurs or in chronic stage with very large and dense plaques that chafe around the edge to normal tissue. these are usually visible with US and most certainly palpable. however for me none of these two things is the case so I wonder what it is about the tissue that is going on because something is definitely not right at all and its not getting better either
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gobbler

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Re: erectile dyfunction for almost a year - please advice
« Reply #26 on: June 23, 2022, 05:28:29 PM »

i am getting insane from this. how long is it okay to just let it stand like this without any further assessment and investigation. I would legit suffer mentally so much less if a doctor actually had the F^@$!ng balls to do a proper test. this is insane to me, an entire year, multiple red flags like zero pde5i response, not one, not one nocturnal or random erection since the deformity, pain inside penis, erections just subside after building up, zero glans engrongement. take your pde5 and it will fix the problem - but it did not. it does nothing. instead of doing a test, why not let the patient suffer in uncertainty, let it ruins his sanity because we dont get paid well enough to do a through investigation with our great public healthcare system. and then they recklessly jerk off to themselves
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Re: erectile dyfunction for almost a year - pleas advice
« Reply #27 on: June 30, 2022, 10:51:24 AM »

for me I think things are getting worse instead of better. my mental health has suffered tremendously under it as well.

the pain and discomfort is extremely irritation and the fact that my dick has not been hard or stayed hard for over half a year is crazy. that I have to suffer with the uncertainty when it would take a professional 30 minutes to do the proper tests and rule out/confirm any suspicion. why is it better to have a patient left in the dark for years? thats what kills mental health. how can you accept something you do not understand.

the discomfort is like an abrasion. maybe fibrosis of the corporeal smooth muscle, its definitely feels like there has been some tissue violation o some sort that is still active and making things worse. it affects my life a lot, I feel like an eunuch

I feel physically ill form just thinking about this condition
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GaussRifle

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #28 on: July 01, 2022, 09:34:57 AM »

Gobbler, I understand what you mean by how it feels when thr dick is trying to expand, except it doesn't. There is discomfort,  I experience the same too when I am semi erect. I have not been having sex with my penis for years now. I am only 26. It sucks very much, but I'm trying to do as much as I can with traction and occasionally taking daily cialis for a month and all. Mentally, I have given myself 2 more years. Once I'm 28, and I don't have a usable erection for sex, I'll get an implant so that I can enjoys my 30s atleast. My 20s swung by and never was able to penetrate. It's unfortunate, but I do my best.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #29 on: July 07, 2022, 05:10:22 AM »

for me it is not about curvature or deformity. I have significant pain in the left erectile body and am completely impotent. it is also getting worse quite fast. I think the pain is a deterioration process and tissue remodeling because my Erectile Dysfunction is now far advanced, I cannot achieve any form of erection even with pills. on the test they do for Erectile Dysfunction is have the highest score. I do not have weak erections or semi rigid, I have a complete inability to get any form of erection at this point. it affects my life very much, my work and studying is for the litter right now. I cant believe I have to deal with this and no doctor has time to look at it properly. If this is permanent, the state it is in right now, I dont know, maybe ill kill myself some point
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Re: erectile dyfunction for almost a year - pleas advice
« Reply #30 on: July 08, 2022, 11:18:58 AM »

Gobbler, why are you not doing traction. You must must do restoreX if it is indeed true that you don't get any nocturnal ercetions. It will atleast prevent tissue remodeling and keep the penile tissue elastic if you were to regain function normally or to get an implant. As bad as it sounds right now, don't close even more doors. Do traction.
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #31 on: August 20, 2022, 01:28:07 PM »

i have read but... i dont know what i say
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Re: erectile dyfunction for almost a year - pleas advice
« Reply #32 on: August 30, 2022, 09:24:58 AM »

i got lab work done now after being off of any medication for 9 months.

testosterone is low at 400ng/dl free Testosterone is 9.5ng/dl whoch is half of what it was last year

dht is 299 on a scale of 250-1000 so complete in the garbage without any finsteride needed. funny that i have such aggressive hair loss when my dht is that of a 75 year old chain smoker. Erectile Dysfunction and sexual dysfunction still very much present as always
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Mikel7

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #33 on: August 31, 2022, 05:40:39 AM »

testosterone is low at 400ng/dl free Testosterone is 9.5ng/dl whoch is half of what it was last year


  These are the horrible side effects for some men and sometimes will reverse itself. There are very few male hormone Dr's that know what they are doing. You need to be on TRT.

Also Samethingagain why don't you fill out your signature line like everyone else does -->https://www.peyroniesforum.net/index.php/topic,10819.0.html
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Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #34 on: September 06, 2022, 06:14:10 PM »

I think it is progressing rapidly because the stress you are putting yourself through. You have a problem to get hard and you are constantly telling yourself you can't and that you are impotent bro. Your body is in constant fight or flight and you wonder why it rapidly went for the worse. I completely understand you because I am also pretty much in the same boat but obsessing and worrying this much about it will only make matters worse.

Try see if you can get in touch with a doc that can perform an erect ultrasound on you. Then you can get it confirmed wether you have a venous leak or not. If you do not I bet you almost within a week you will start getting boners again simply because of the pshycological relief.

Also you can trye your hardest just 7 days try not to think about it 24/7 and if you jerk off don't think no I can't get hard but rather tell yourself yes I can, keep telling yourself that and try to be really in to it.

I mean the way you are describing it being stressed the f out and anxious 24/7 then 9/10 guys would struggle to get hard in that scenario. Also at all costs abstain from porn.
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28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #35 on: September 07, 2022, 03:55:40 PM »

@sonic, i am not putting myself through any stress. the stress if any is present was not here before the Erectile Dysfunction but the other way around. why is everyone trying to tell me that its in my head without knowing the situation in any detail and not having done a proper assessment? I would in fact love for it to be a psychological issue but I find the chances for this comically low at this point. in psychological Erectile Dysfunction some or all of the following things are usually true which are all not happening in my case:

1) psychogenic Erectile Dysfunction is often situational, it is never completely constant in every situation. it is highly unlikely that every day you are in the exact same anxious state, that there is never a day or a situation where you are relaxed or not thinking about the Erectile Dysfunction. for example most of the time I am very much relaxed, I am not anxious anymore after 12 months of this how would anyone be afraid? it just becomes status quo. I often went into it thinking I feel good, today it will be fine. but it never is. totally independent on the situation, the same every day


2) spontaneous and nocturnal erections happen in most men who have psychogenic Erectile Dysfunction. I have not had anything remotely close to that in 12 months. in fact, back when I was on the anti androgen medication I had them more commonly as I do now.

3) painful erections with deformity. what a coincidence it would be that the onset of Erectile Dysfunction is matching up with the time where the deformity and painful erections set in. there is clear observable changes on the penis and it is not far fetched, that they are connected.


furthermore I have quit masturbation for weeks at some point and it made absolutely no difference. Cialis makes no difference. being relaxed and not even thinking about it makes no difference.

i am not obsessing or worrying about it most of the time. just some days, the days I post here when I realize just how long this has been going on and that it has always been completely constant, no better days and that it will most likely not get much better. my doctor says as long as I can get somewhat of an ereciton even a weak one further steps are not recommended however with this state I will never in my life have sex again. it is so unformfortable and unsatisfying I basically feel like an eunuch at this point. nobody takes it seriously, nobody does any freaking tests after so much time its not important it seems.


and the entire idea that porn causes Erectile Dysfunction makes no sense to me. I am not desensitized, it is not that I do not find what I see or think not arousing, it is that there is something mechanically that is not working properly where the erection just falls together. stop blaming it on psychological factors when every evidence points to an organic problem, why would anyone do this?


i want the test done for sure but I have not been able to find a doctor to do it. insurance would not pay for it I guess because they are a bunch of mob gansters that lust after money
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Sonic

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #36 on: September 08, 2022, 06:00:03 AM »

I never said it was 100% psychological, I even said try get an erected ultrasound because then you can clearly see how the bloodflow is working. Getting hold of a doctor who cares is another thing though. In that scenario more than half of us are in the same boat. The fact that your doc told you as long as you can get any erection even a soft one is a red flag and you need to try switch him out asap and go to another one. You might be a candidate for an implant if things do not improve.
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28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

tsp

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #37 on: September 08, 2022, 10:33:31 AM »

Since your problems started with (self inflicted?) trauma, have you tried consulting a reconstructive urologist/surgeon?
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Indentation in the left CC near the base.
Lost 2 inches, regained 1 with RestoreX
Cause: injury due to wife's vaginismus.

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #38 on: September 20, 2022, 06:51:22 PM »

Havn't heard from you in a few weeks how are you doing man? Still the same?
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28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #39 on: September 26, 2022, 12:19:47 PM »

Havn't heard from you in a few weeks how are you doing man? Still the same?

hey. I have seen zero improvement. erections are just painful which I assume is due to the scar tissue which is sparse but I think spreading throughout the right erectile body making it malfunction and painful. I have given up on ever achieving a satisfying sexual experience ever again. depressing af. also got more depressed and insecure about other parts of my body again like my very aggressive hair loss which I why 12 days ago I went back on finasteride(anti androgen)  on a full dose. it will not make my Erectile Dysfunction and peyronies better, in fact it will probably make it worse in the end. however what is worse than being impotent and having a malformed penis is being impotent, having a malformed penis and looking like an 85 year old man in your late twenties. that affects not only my sex life which never existed in the first place but also other parts of my social life and on a fundamental level my emotional well being which is already total trash having been depressed for 8 years. for the penile pain I take a non steroidal pain killer. it is sick indeed that it came this far but thats what it is, I hate this situation and my life is a mess because of it but its not going to get better anyway especially because doctors are passive and disinterested as [email protected]< so thats the update
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Sonic

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #40 on: September 26, 2022, 03:48:13 PM »

I'm really sorry to hear that. You are still relatively young like me. Shame you went back on that drug. I used it myself when I started noticing my hair loss had become real agressive. I would not be surprised if it in someway contributed to this crap hole I find myself in now. I ditched finasteride very quickly though and have been shaving my head ever since so believe me when it comes to that issue of hair loss I fully know what it feels like. It feels like part of you dies when your hair goes but both my father and my brother are both norwood 7 so I was doomed anyway.

Judging from all your posts it also seems like finasteride side effects might me one of your big triggers, everyone knows impotence and penile issues is a side effect from that drug. It is your call but remember there's a possibilty it might make you permanently impotent. I've read a lot of success stories hear about implants, perhaps it's reached that territory for you know.
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28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
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gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #41 on: September 26, 2022, 03:57:25 PM »

what really is the difference between my dick now, short as [email protected]<, indented and highly dysfunctional and permanent impotence? as if I could gather any attraction in the first place when I was bald, its not like I get off the drug and have normal or satisfying sexual function. then I would stop. however the call is harder to make when its already kind of ruined beyond repair and nothing has helped for a year. its easier for me to accept being impotent and without any sexual function while not being bald than it is having those things and looking like a 40 year old with some strange disease which is what I genuinely look like when I shave my head. at some point mental health capacity is saturated and it was very saturated in my case when I started having peyronies(before any finasteride mind you) and was robbed of a normal sexual youth in my mid twenties, why would I let myself get robbed of a appearance that fits my age and the very last ounce of confidence and self esteem that I still have in addition? so I can be bald while I have my painful deformed erections sitting alone in my room? what's the point?this train has left the station sadly and I have given up on it
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diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #42 on: September 26, 2022, 04:00:12 PM »

I would also never get an implant.
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diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #43 on: September 26, 2022, 04:16:57 PM »

and what I do if everything gets significantly worse I will not say or this post will be deleted
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diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

Sonic

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #44 on: September 26, 2022, 04:18:13 PM »

It's a f'~c<+d up thing this disease yeah. I hope someday a turn around will happen for you. Sometimes good things can happen when we least expect them.
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28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

tsp

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #45 on: September 26, 2022, 04:58:27 PM »

Gobbler,

You are such a bright and articulate young man, it is heart breaking to see you in such distress. What I'm writing may not be appropriate for the forum, but please get help for your mental health. You can't figure out the reasons for your distress all by yourself, bright as you are.

Understanding/fixing mental health is not a one person task - an army of researchers has been at it for decades. Please tap into the knowledge they have distilled from thousands of experiments.

Your well wisher,
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51 years old
Peyronie's onset in 2009, diagnosed in 2021.
Indentation in the left CC near the base.
Lost 2 inches, regained 1 with RestoreX
Cause: injury due to wife's vaginismus.

gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #46 on: September 27, 2022, 04:08:15 AM »

tsp, thanks for your kind words, however you will be dissapointed to hear that I have already been in therapy for the past 2years and while I have come forward a bit I still am and feel like this
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diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single

Sonic

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #47 on: September 27, 2022, 06:51:24 AM »

tsp, thanks for your kind words, however you will be dissapointed to hear that I have already been in therapy for the past 2years and while I have come forward a bit I still am and feel like this

At least that's a good step with therapy. Don't give up hope, people on here are gathered to help and also you can PM me if you ever wanna talk.
Logged
28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

tsp

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #48 on: October 07, 2022, 02:40:37 PM »

Gobbler, are you also on medication? Mental health is best restored by a combination of medication and psychotherapy.
Logged
51 years old
Peyronie's onset in 2009, diagnosed in 2021.
Indentation in the left CC near the base.
Lost 2 inches, regained 1 with RestoreX
Cause: injury due to wife's vaginismus.

gobbler

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Re: erectile dyfunction for almost a year - pleas advice
« Reply #49 on: October 14, 2022, 09:33:17 AM »

not on any medication. I tried several like escitalopram but I am not a fan of them, I think they had no effect on me outside of some potential placebo effect unfortunately. I still feel kind of lost in everything
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diagnosed with peyronies disease in Feb. 2020
mid 20
tried VED without much success, Cialis and potaba
single
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