Partner was diagnosed 7 months ago

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Honeydew36

Hello, I'm here looking for information for my partner and to educate self.

My partner of 3 years was diagnosed about 7 months ago. His GP prescribed him with Pentox. I feel lucky he got on it a few months after symptoms showed up since a lot of people don't have access to it. So far, the pentox has softed up the plaque and he has also seen progress with the physical dent and bend straightening out. However he is unable to get a sufficient enough erection for sex due to the constriction of this plaque and he says he is at about 90 percent erect. We have not had penetrative sex in 6 months.

Wondering how I can help as he is avoiding the internet. He's very depressed and his GP advised him to not look online and freak out about what he will find.

So far I got him on CoQ10 and Vit E. I'm also in the process of ordering a VED- is it too late?

What can we do for his erectile dysfunction at this point? I'm doing my best to read the forum but am overwhelmed. Viagra and Cialis is expensive and will he have to rely on it to have sex? Any advice appreciated. Thanks in advance.

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peter123

generic Cialis (taladafil) is not expensive, costs like a dollar per day(and can even less) if taken everyday can be very effective and also help with the condition itself. my doctor thinks its the only oral drug worth recommending and makes sense  
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Honeydew36

Quote from: peter123 on October 13, 2020, 05:05:18 AM
generic Cialis (taladafil) is not expensive, costs like a dollar per day(and can even less) if taken everyday can be very effective and also help with the condition itself.

So the medication for erectile dysfuntion helps in the treatment itself? As in bringing blood to the erections? Overall penis health? Or does he need to take this indefinitly just to get a proper erections?  
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peter123

Quote from: Honeydew36 on October 13, 2020, 01:26:58 PM
So the medication for erectile dysfuntion helps in the treatment itself? As in bringing blood to the erections? Overall penis health? Or does he need to take this indefinitly just to get a proper erections?

A urologist will evaluate the nature of historic ED. But cialis supposedly helps for the disease itself by having mild anti fibrotic properties and with strerchint out the tissue internally
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Honeydew36

Ah, I see, so the cialis helps with treating it. That answers my question.

Is there anywhere I can find any success with a situation like his?

He started with pain, felt a lump, then hourglassing and a bend. Since pentox he is surprised how much the tissue softened and to the eye it looks straight (to me anyways). Less pain now but he is left with difficulties with erections.

From what I'm reading men with curves can still get erections but in other cases there's erectile dysfunction due to constriction and I'm worried he's going to need an implant. Can this be corrected with a VED...? We don't have access to a specialist in BC, Canada. One showed up on google but consult is very pricey.

His GP advises against injections and to stay on the pentox cycle then check in when he is out of pills.  
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peter123

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Honeydew36

He doesnt have insurance. I do but we are not common law or married.Xiaflex is not covered either.  
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peter123

I forget that there are countries where insurance is not mandated or covered for by the government. to me this seems totally crazy
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LuisFernandez

I would recommend using some VED, specially if there's no length loss. The Soma Erect is a good model: https://matadorcore.com/products/augusta-medical-soma-erect-vacuum-pump.

If the ED is caused by fibrotic/scar tissue causing a venous leak, then it might help soften it up enough to help trap blood better. It'll also help in maintain penile function if used every day.

He should use it every day 1 or 2 times a day max of 20 minutes per session. You can see good protocols in the other sub-forums.

Cialis should help, if it doesn't he should get his hormones tested. If things don't improve he should get a venous leak test by a specialist with an induced erection. He he has a venous leak then there's not many viable treatments besides an implant. He could try shock therapy, PRP shot, but it's hit or miss from what i've seen.

Injury in April 2020. Onset of ED.
Started RestoreX and VED 2 months after injury.
Taking 10mg daily cialis, pentox, coq10, vit-e.
Traction (+1 inch)/VED/PGE-1/DMSO+X

peter123

Quote from: LuisFernandez on October 14, 2020, 10:51:58 AM
I would recommend using some VED, specially if there's no length loss. The Soma Erect is a good model: https://matadorcore.com/products/augusta-medical-soma-erect-vacuum-pump.

If the Erectile Dysfunction is caused by fibrotic/scar tissue causing a venous leak, then it might help soften it up enough to help trap blood better. It'll also help in maintain penile function if used every day.

He should use it every day 1 or 2 times a day max of 20 minutes per session. You can see good protocols in the other sub-forums.

Cialis should help, if it doesn't he should get his hormones tested. If things don't improve he should get a venous leak test by a specialist with an induced erection. He he has a venous leak then there's not many viable treatments besides an implant. He could try shock therapy, PRP shot, but it's hit or miss from what i've seen.

Cialis wouldn't work with a venous leak would it?
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LuisFernandez

No, there's really not much that'll work on a venous leak. It *may* work if the venous leak is due to scar tissue not expanding to trap blood and then the cialis helps remodel and soften the scar to improve blood retention, certainly something to try.

Back in the day doctors used to vein ligation, but it didn't seem to have long-term success and is not done in the US anymore i believe.

This is just from what i know, but an expert doctor would know best. But a venous leak is basically untreatable beside an implant from what i understand.
Injury in April 2020. Onset of ED.
Started RestoreX and VED 2 months after injury.
Taking 10mg daily cialis, pentox, coq10, vit-e.
Traction (+1 inch)/VED/PGE-1/DMSO+X

peyroniesurprise

I would recommend against meds. He should try beets or other foods that increase nitrix oxide, which is what is responsible for erections among others.
31 yo, Hourglass Peyronies likely because of masturbation

Treatment: Vit E and fish oil (vitD+E), no more masturbation; good improvement so far, less hourglass both in flaccid and erect state, little to no pain during erection now

jan.schaller1958

Peter is Right. Cialis is the only oral med for Peyroines with any real effectiveness. Pentox Never did a thing for me. Some people think it helps, but I doubt it. And I believe cialis is generic now so it should be affordable if you don't have insurance.

As far as eating beets. Well, that comment isn't worthy of comment. You can eat an apple too and probably expect the same result. Nothing.  
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peyroniesurprise

Beets provide nitric oxide, which is the same thing cialis does. Please dont talk if you dont know anything about the subject
31 yo, Hourglass Peyronies likely because of masturbation

Treatment: Vit E and fish oil (vitD+E), no more masturbation; good improvement so far, less hourglass both in flaccid and erect state, little to no pain during erection now

jan.schaller1958

Quote from: peyroniesurprise on October 16, 2020, 06:27:01 PM
Beets provide nitric oxide, which is the same thing cialis does. Please dont talk if you dont know anything about the subject

You're not serious with this beets business are you? Are you really comparing eating beets to taking cialis (Taladafil)? I'm speechless with these absurd claims. I think I'd trust the opinion of Peter's doctor over your bizarre claims.  
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peyroniesurprise

Again, if you dont know, dont want to know or dont care why they are so similar, it would be best you refrain from commenting
31 yo, Hourglass Peyronies likely because of masturbation

Treatment: Vit E and fish oil (vitD+E), no more masturbation; good improvement so far, less hourglass both in flaccid and erect state, little to no pain during erection now

jan.schaller1958

Quote from: peyroniesurprise on October 17, 2020, 04:26:33 AM
Again, if you dont know, dont want to know or dont care why they are so similar, it would be best you refrain from commenting

I'm commenting  because you obviously don't know and are just spreading misinformation about a dumb vegetable and comparing it to a real medication, which is idiotic. Anyone could see that. What are your qualifications to say this? None.

Similar is one thing, but you're implying one is as good as the other which is false.  
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peyroniesurprise

Id suggest you watch your language. I have been respectful towards you and i expect the same in return.

I did not say beets and cialis are the same but that they share the mechainism of action which is nitric oxide modulation.

Its recommended to try the tamer and natural version first and if that doesnt work, nuke it with Cialis.

Although Cialis and others are just band aids and it is extremely abnormal for young people to be on cialis in the first place
31 yo, Hourglass Peyronies likely because of masturbation

Treatment: Vit E and fish oil (vitD+E), no more masturbation; good improvement so far, less hourglass both in flaccid and erect state, little to no pain during erection now

jan.schaller1958

Fine Peyroinesurprise. I don't know about nitric acid, but what's the point of trying a vegetable before a real tested medicine, proven effective, that doctors recommend?  No doctor recommends starting out with beets , then ,,nuking it" as you put it with cialis if beets don't work (which they do not. Cite a case controlled study in a reputable medical journal to prove this). That's ridiculous.  
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Olive

There are studies that prove that beets work. Doctors are in a business of making money by prescribing drugs. They don't want to cure you of any disease, they want you to keep generating income for them and pharmaceutical industry by using drugs. How much money do doctors make if you eat beets and you don't need any drugs, I think that would piss them of just a little bit. I mean they have to have a nice car, house, summer place, kids have to get through college etc. None of that will happen if Jan starts to eat well and throws those drugs into dumpster. And like I said before, doctors don't know anything about nutrition, they didn't get any nutritional education and they would have to use their own time to search for that knowledge, but they are too busy making easy money by just prescribing drugs.
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jan.schaller1958

Olive,

I don't know if you know it, but it's illegal for doctors to take kick-backs from drug companies for prescribing any sort of drug. That's always been both unethical and illegal.  That doesn't happen, except of course in the minds of conspiracy theorists. Just how are doctors making money by prescribing drugs, especially in the US in standardized health care services like the VA, military hospital doctors, doctors working for companies like Kaiser?

Sorry. That excuse just won't fly.  
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jan.schaller1958

Olive, what that article described was illegal activity.

,,According to an affidavit by an investigator for the Drug Enforcement Administration, Thiyagarajah's office was inspected by the agency in June 2015 and found to be prescribing another opioid, buprenorphine, "for non-legitimate medical need" in violation of federal law."

Of course there are a few bad apples here and there, but you were making it out like this is wide-spread and legal practice. It's not. It's unethical, and illegal everywhere in the US and in Europe and always has been for pharmaceutical companies to pay kick-backs to doctors. Try walking into any Kaiser facility in the US and ask for an RX for an opioid for a common headache. The docs will show you the door so fast it will make your head swim. You wouldn't believe what I had to go through just to get a partial refill of oxycodone pills I need for my subdural hematoma I suffered on 10/6/20. The on -call doc would only give me 8 pills to get me through the weekend  and said talk to my primary care guy on Monday. The pharmacy had me sign multiple forms in triplicate just to get a few lousy pills. It's truly ridiculous.

I have a friend working as a primary care doc at that Kaiser Hospital and I'll be glad to ask him how much of a kick back he gets from the drug manufacturers for his prescriptions. I guarantee you he'd be shocked by the question and say nothing.  
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TonySa

Actually docs do get direct payments from pharmaceutical companies.  You may look up your doc and which companies give them payments here:
https://projects.propublica.org/docdollars/
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.

Honeydew36

Thank you for the responses. Have a VED on the way. Worried about this venous leak possibility, this is news to me so I'll have to look up what that means. Is intercourse not at all possible when there's about a 90 percent erection? Is woman on top out of the question as well? I'm a bit worried because we did have intercourse out of frustration but it wasn't fully firm. Is that super risky or can it be done carefully?

I'm also wondering if it's normal to be charged for a consultation with a specialist for 500 per half hour. This is what I was quoted here in Canada.  
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Olive

Quote from: Honeydew36 on October 20, 2020, 03:10:41 AM
Thank you for the responses. Have a VED on the way. Worried about this venous leak possibility, this is news to me so I'll have to look up what that means. Is intercourse not at all possible when there's about a 90 percent erection? Is woman on top out of the question as well? I'm a bit worried because we did have intercourse out of frustration but it wasn't fully firm. Is that super risky or can it be done carefully?

I'm also wondering if it's normal to be charged for a consultation with a specialist for 500 per half hour. This is what I was quoted here in Canada.

It depends on a doctor, some are scammers. Years ago I did mole removal by laser, it cost 100 dollars by this one doctor. Then I went to a different doctor, same hospital, same device, same reserved time, it cost 500 dollars. Some doctors are just flat out milking money.
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Honeydew36

Quote from: Olive on October 20, 2020, 03:32:30 AM
It depends on a doctor, some are scammers. Years ago I did mole removal by laser, it cost 100 dollars by this one doctor. Then I went to a different doctor, same hospital, same device, same reserved time, it cost 500 dollars. Some doctors are just flat out milking money.


Thanks. It seems like a fancy private clinic.  
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LuisFernandez

Sex with a less-than-firm penis is always risky. Particularly with girl on top position. Having rough sex with semi-erect penis is how i got the disease.

You might be ok if you're careful and stick to safe positions. Girl on top might be ok if you just don't jump up and down wildly.

500 for a 30 min consultation sounds crazy expensive, but i have no idea how the Canadian healthcare system works. It better be an in-person consultation at least, otherwise you might be better off consulting with Dr. Levine from Chicago. At least for a virtual consultation.

To answer your private message regarding Venous Leak. AFAIK there's two reasons for ED in men with Peyronie's: arterial insufficiency and venous leak. Both can be caused by scar tissue. In arterial insufficiency blood simply can't reach the tissue because of scars. In venous leak the blood gets in but the tissue can't expand enough to trap the blood in the penis to maintain an erection. Cialis is the way to go here to get started.

BTW, your man is super lucky for you to be doing research for him. Mine couldn't be bothered with it.
Injury in April 2020. Onset of ED.
Started RestoreX and VED 2 months after injury.
Taking 10mg daily cialis, pentox, coq10, vit-e.
Traction (+1 inch)/VED/PGE-1/DMSO+X

Honeydew36

Quote from: LuisFernandez on October 23, 2020, 03:30:19 AM


To answer your private message regarding Venous Leak. AFAIK there's two reasons for Erectile Dysfunction in men with Peyronie's: arterial insufficiency and venous leak. Both can be caused by scar tissue. In arterial insufficiency blood simply can't reach the tissue because of scars. In venous leak the blood gets in but the tissue can't expand enough to trap the blood in the penis to maintain an erection. Cialis is the way to go here to get started.

BTW, your man is super lucky for you to be doing research for him. Mine couldn't be bothered with it.


That clears up a lot, thanks. Unable to find a specialist where i'm located so I think we will just have to go with trial and error...

And thanks, it affects me too so I feel motivated to do something about it. Also I think it might help for him to take his mind off it while I look into it.
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LuisFernandez

I *think* Cialis helps because it promotes a lot more blood flow than would naturally be possible so it makes the leak less noticeable. I've heard that's why Cialis works at first and then after some time it doesn't, because the penis becomes more 'diseased.'

Injury in April 2020. Onset of ED.
Started RestoreX and VED 2 months after injury.
Taking 10mg daily cialis, pentox, coq10, vit-e.
Traction (+1 inch)/VED/PGE-1/DMSO+X

peter123

"In case of significant venous leakage disease, no patient reported a good treatment result with sildenafil and 83% reported a bad response [4]."
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LuisFernandez

https://medlineplus.gov/druginfo/meds/a604008.html:

"It works to treat erectile dysfunction by increasing blood flow to the penis during sexual stimulation. This increased blood flow can cause an erection."

Obviously if the leak is significant then Cialis will not help. But when it's minor to moderate it may. At the least it should be tried, then injections, then implant.
Injury in April 2020. Onset of ED.
Started RestoreX and VED 2 months after injury.
Taking 10mg daily cialis, pentox, coq10, vit-e.
Traction (+1 inch)/VED/PGE-1/DMSO+X

Pfract

Quote
damn i probably have a venous leak

@peter123: i already warned you once, and i am warning you again. Moderate your speech and stop spamming every thread with your own problems. There are specific sections and threads for it and you have to understand that. You keep going like this i am going to advocate for you to get banned pretty soon. STOP DOING THIS AND START HAVING A DIFFERENT ATTITUDE. BE COURTEOUS AND RESPECTFUL TO OTHERS ABOVE ALL ELSE AND REMEMBER WE ARE ALL IN THIS TOGETHER.

WARNING #2

TonySa

I agree some will support Pfract's recommendation if you don't keep to your own threads!
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.

LWillisjr

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Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
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