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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: I can't deal with this anymore  (Read 1011 times)

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prometheus

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I can't deal with this anymore
« on: November 07, 2020, 07:05:05 AM »

Hi,

My symptoms started in late September after an injury during excessive masturbation. This would have been my last one before starting NoFap. I experienced pain on the bottom right side of the penis and then a right curvature more than 30 degrees. I visited 3 urologists. The first one didn't even examine me, the second didn't find palpable plaques and the third didn't see calcified plaques in an ultrasound (didn't mention about plaques in general). He also recognized the curvature by a photo he saw. Two of them mentioned surgery if it gets worse but none of them suggested alternative treatments, although I begged them. They told me that nothing works. I searched on the internet and in this forum and currently taking coq10 (3x100mg), acetyl-l-carnitine (2 x 750mg), vitamin E (1 x 400iu). I'll add L-arginine (2 x 1000mg) and tadalafil (1 x 5mg) the next few days. I live in Dublin but the queues are long for specialists, so I had to travel to Greece, but unfortunately didn't visit the right doctors. I can't find anyone to prescribe pentox.

I'm depressed and panicked. I see a psychiatrist online but she's of no help. I have a small penis, almost 4 inches and I have already lost some girth. I can't afford to lose any length though.

I don't know what to do anymore.  I just want to wake up from this nightmare.

Is there hope for me? Can this resolve on its own? I don't want to live if it can't.
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jan.schaller1958

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Re: I can't deal with this anymore
« Reply #1 on: November 07, 2020, 06:39:41 PM »

Sorry to hear of your situation Prometheus. There are no oral medications that are proven to work. Cialis is fine to keep blood flow going and erections, which are healthy. But, it’s not a treatment for Peyroines (other than treating Erectile Dysfunction). Just about every doc will give you Pentox, but whether it does anything is up for debate. It’s not going to hurt you at least. I took it for a year or two and my hourglassing went away, but I can’t say it was because of the Pentox. The vitamin and mineral treatments aren’t going to do anything. Vitamin E was studied for a long time,  but later studies were shown it to be no more effective than placebo. I would think even the older studies that showed it helped some men, probably only made a small difference. And it’s totally counterintuitive to think vitamins and minerals or diet have anything to do with Peyroines. If they did, why would some guys get it at 22 and others at 56? What’s different in nutrition?

All I can say is find a super-specialist who only treats Peyroines. Tom Lue of San Francisco, at UCSF is a world renowned expert. https://urology.ucsf.edu/people/tom-f-lue . I’ve been to him twice. Even not having insurance, he can give a full exam with ultrasound for about 500€ and recommend treatment. I maintain private US insurance that covered it, which I always had in case I need it and am over there. Since there are so few really top experts on this in the world, i think your best chance of some sort of good treatment is if you don’t mind traveling and spending some money. But, when it comes to your life, psychological and sexual health, what could be more important?
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NeoV

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Re: I can't deal with this anymore
« Reply #2 on: November 07, 2020, 07:48:49 PM »

I wouldn’t worry about Pentox, although it has has been shown to work, as well as cialis. Until the CoQ10 study is retracted, it’s also been proven to work. It’s also been shown to reduce insulin in women with PCOS and prevent fibrosis is other organs such as the heart and lung.

Traction and VED are critical for preserving length loss and restoring lost dimensions.

Xavier99

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Re: I can't deal with this anymore
« Reply #3 on: November 07, 2020, 08:14:05 PM »

Jan is the voice of reason on most of these feeds. The most effective treatments are Xiaflex or surgery.. There is no proven oral medication that reduces curvature or stops progression. Traction works moderately for some but also can cause significantly more damage.. it’s not a cure and comes with risk. Anyone who tells You otherwise on here is just trying to sell you clicks or books.
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35 yrs old
Onset 05/01/20 diagnosed 05/14/20. Taking Pentox, trental, multivitamin, Zoloft & Tylenol
Traction was painful and made it worse
Lateral plaque by glands 20 degrees left/ narrowing
Lost about 2cm length

NeoV

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Re: I can't deal with this anymore
« Reply #4 on: November 07, 2020, 09:23:03 PM »

Read the studies on Pentox and CoQ10 and make your decision on what is "proven" to work. Traction has never caused more damage in any study, even if I agree that it's possible. If you have advanced PDS, just like advanced heart disease, then obviously these less invasive treatments won't "work" in a way that's meaningful to you.

Traction is just as much of a cure for some as surgery. Surgery doesn't make your penis ideal, it's a last resort. There is absolutely no "cure" 100%, nobody ever said there was. In many cases surgery or xiaflex would be a worse choice than physical therapy, while in some cases they are the best choice.

Xavier99

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Re: I can't deal with this anymore
« Reply #5 on: November 08, 2020, 07:26:30 AM »

My first uro  prescribed me pentoxofylinne right at onset and didn’t really let me know it was bogus . I remember emailing him monthly as my penis continued to bend/narrows and hurt asking when it was going to start working. It wasn’t until I saw my second uro 5 months later who  said all studios I’m reading online are garbage and so is the drug. It was a real blow but true!I also learned from the 2nd uro that traction has little chance of anything besides more problems if your plaque is closer to the glands. I know everyone here wants to bend, stretch, pop pills, get radiation.. whatever. I don’t want to be the Debbie downer but I wish someone was real me before getting on this forum. Treatment really begins when you’re stable and there are 2 options. Xiaflex and the knife.. or live with it which has been my choice
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35 yrs old
Onset 05/01/20 diagnosed 05/14/20. Taking Pentox, trental, multivitamin, Zoloft & Tylenol
Traction was painful and made it worse
Lateral plaque by glands 20 degrees left/ narrowing
Lost about 2cm length

Wilson

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Re: I can't deal with this anymore
« Reply #6 on: November 08, 2020, 11:19:44 AM »

Prometheus, Listen to Jan.Schaller1958, You need to meet with a world top-famous peyronie specialists, who know how to help you somehow, despite this expensive travel. Soon, in coming months I will travel to specialists too. I really have tired to struggle with disorder during almost 9 years and I want to meet those doctors as soon as possible. By the way, how old are you? Just curious to know.
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Young and regularly thinking about this issue
Peyronie's without curvature since April 2012 due to injury
Almost constant discomfort and Loss of penile sensation
Still fighting - trying to find a top famous specialist

TonySa

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Re: I can't deal with this anymore
« Reply #7 on: November 08, 2020, 12:10:42 PM »

Prometheus, your supplements + low dose nightly generic cialis + pentox (if available) + physical therapy (traction or VED) have helped many.  You can read  their experiences here on the forum, read studies which support that, and consult w world renown Peyronies Disease specialists docs who agree.  (Don’t let the above statements make you hopeless.). Be sure to read the survival guide and bring any questions you gave back here.  Stay strong. https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057
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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.

McChicken94

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Re: I can't deal with this anymore
« Reply #8 on: November 08, 2020, 07:06:27 PM »

He is right in a sense that scar tissue typically doesn't just return to healthy tissue again. So in a way peyronies is forever. Also, I do not know for sure cause some report getting improvements with cialis, pentox, L-Citrulline and VED. I have done all these drugs over a prolonged period of time and I keep getting worse, not better. I also tried upping or lowering the dose, masturbating often, not masturbating at all. Using VED on and off, but honestly even when pumping light again it gets worse not better. I am not trying to be bitter about treatment options. As a matter of fact I feel I could have been saved with an implant if I was sooner. But as far as oral treatments I tried them all. Natural ones too. I am also on a high TRT dose of testosterone and in great shape. My cardiovascular health is great. Normal blood pressure despite being stressed af 24/7, slow heart rate, high red blood cell count but within normal. Everything optimal yet my dick just won't heal or even stabilize. Not saying lifestyle changes, supplements and drugs won't help anyone, but my experience tells me it can't be very effective. I think my urologist is defenitely not the most expert guy when it comes to peyronie's so I take his advice with a grain of salt, but he too said pentox does nothing and was surprised a different uro perscribed me. And this other urologist actually said the same and only wrote the script cause I wanted him to.
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jan.schaller1958

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Re: I can't deal with this anymore
« Reply #9 on: November 08, 2020, 07:10:59 PM »

Ignore me? Okay, but I did say seek out and consult not one, but several Peyroines specialist doctors to get the best treatment recommendations. Dealing with thousands of men in treating this disease, over decades, they would know. These guys do this for a living.

Listen to personal anecdotes if you like, fine, but just keep in mind they cannot replace in quality the advise of multiple Peyroines specialists who have examined you and can give you the best advice for your situation.
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jan.schaller1958

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Re: I can't deal with this anymore
« Reply #10 on: November 08, 2020, 07:39:58 PM »

McChicken94,

Thank you.

You know, people are always looking for simple answers to complicated questions, and that’s just not how the world is. If oral drug therapies worked with any consistency and efficacy for most Peyroines patients, don‘t you think we would all know about it by now, especially our urologists? Ah, yeah . I do. When you say you’ve tried every oral therapy there is and there has been no improvement, I believe you. So, what does that leave us? Xiapex or surgery, right? That’s how I see it. And, I surely wish that were not the case. And maybe it isn’t for a few out there. So, I don’t want to dash anyone’s hopes.

And, you are also right. Peyroines plaque just doesn‘t go away in like 90% of cases. It is a weird disease. I read of guys here who are really young, like in their 20s with Erectile Dysfunction. That’s just unheard of outside the context of Peyroines. And terribly tragic.

And everyone’s case is different. And my gosh, look at me. I’m only 62, but I’m like a broken down old car from the 70a with a bent fender and broken headlight. I’ve got cardiovascular problems (CAD- cardiac artery disease) and did have some blocked up small arteries around my heart but they couldn’t put in stents. So, I have to take 80mgs of Lipitor a day for that- a huge horse pill- plus two blood pressure meds, amlodipine and lisinopril. My Peyroines doc said I have athlerosclerosis, hardening of the arteries, like everywhere. Then had to have my gallbladder out a year ago because I had over ten gallstones (so many I think the pathologist stopped counting after 10). Then I need a benzo to sleep along with Ambien. My gosh, you should see my nightstand. Pill bottles everywhere. Then I’ve had that Peyroines thing going for 5 years. I did keep the Pentox bottle, and it’s full but dates to 2017 when I stopped taking them, assuming they were worthless. Yet, strangely, in spite of this mess, all these cardiovascular problems and heart problems and Peyroines, I still get hard morning wood and have no problems getting hard erections, and that’s without viagra or cialis. So, none of this makes any sense to me. I guess everyone’s body is just different. I am grateful for the problems I don’t have. So Peyroines as a disease is just sort of baffling. So I guess all I can say is find something that works for you and go for it. But, the only true treatments are Xiapex and/or surgery, with any consistent affect.
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TonySa

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Re: I can't deal with this anymore
« Reply #11 on: November 08, 2020, 08:41:08 PM »

Jan, please read what i wrote.  Some of the best Peyronies Disease specialist recommend traction-such as Dr Lue who actually created a surgery for Peyronies Disease!
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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.

jan.schaller1958

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Re: I can't deal with this anymore
« Reply #12 on: November 08, 2020, 10:36:14 PM »

Well yes, I meant to say the only generally accepted treatments are Xiapex with subsequent traction, and/ or surgery.

Obviously traction is a necessary component of xiapex injections because the softened plaque has to be remodeled somehow and, I know, that that is where traction comes in. However, I’m not so sure of how traction alone- without Xiapex first - is going to be effective (although I’ve seen some of the claims made here) and I surely wouldn’t try it without the approval of a Peyroines specialist. I’d be concerned about not only ineffectiveness but causing damage. But, I’d have to defer that question to a Peyroines specialist.
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NeoV

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Re: I can't deal with this anymore
« Reply #13 on: November 09, 2020, 01:18:30 AM »

If anyone’s looking for a simple answer it’s those who think surgery and invasive treatments are the only option. Traction is an effective mono therapy, and Tom Lue is the one who pioneered the pentox research. If your case is severe, then go for surgery or Xiaflex. If not, dedicate yourself to a plan including physical therapies and supplements or drugs until you’re certain it cannot help you.

You have to actually read the research.

jan.schaller1958

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Re: I can't deal with this anymore
« Reply #14 on: November 09, 2020, 05:15:14 PM »

NeoV
Im not surprised Dr Lue was involved in Pentox studies. He’s co-authored several articles on Peyroines treatments . That doesn’t per se mean he was satisfied by the results. I’ve seen him twice, once in 2015 and once in February of this year and he certainly never recommended taking Pentox on either visit. And, mine started in 2014 (end of the year) and I saw him in early 2015.

Im not in the least opposed to people trying traction or oral therapies to treat Peyroines as long as they don’t hurt themselves in the process. I personally don’t think diet, vitamins or minerals have a thing to do with Peyroines. Either in getting it or treating it, Yes it associates with some diseases, but it’s cause is unknown. I think the best theory on cause is genetic predisposition plus some mild repetitive trauma, because this really is a wound healing disorder, like keloids, that is poorly understood. Male pattern baldness is sort of the same mix- genetics plus male hormones, with a lot of variables tossed in on the genetics end.
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knowledge81

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Re: I can't deal with this anymore
« Reply #15 on: August 08, 2021, 02:50:54 AM »

My cardiovascular health is great. Normal blood pressure despite being stressed af 24/7

It is my opinion that if you don't lower stress, everything else is a waste of time. Diet, supplements, they will all be useless if the body is ridden with stress. I believe exercise and meditation and counselling will help with stress. It must start here. Breathing. How do you breath shallow? From the belly?
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Age: 40
Diagnosed: July 2020
Shape: 45° left & started up, indentation top+left of base
Treatments: ESWT
Supplements: L-Citrulline, acetyl l-carnitine, curcumin, K2, ubiquinol, pine bark extract, krill oil

Hawk

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Re: I can't deal with this anymore
« Reply #16 on: August 08, 2021, 08:10:03 AM »

I think there is no doubt that stress is a factor.  Too many men report Peyronies Disease as being "now this" on top of all the stress I was going through.  How big of a factor is unknown.  I am not sure it has anything to do with breathing with the belly.
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Winter

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Re: I can't deal with this anymore
« Reply #17 on: August 09, 2021, 06:18:20 PM »

There is a guy speaking about deep breathing (with the belly), among other things like cold showers, as techniques to enhance the response of the immune system and to promote stress management. He is called Wim Hof, or the iceman. He has quite an interesting story. I strongly recommend check him out. Maybe he knows something, maybe not. Who knows?
It worth a shot though, since it is completely free and harmless.
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39 yo, married Onset on 07/20. Major flare up 07/21
Deep indentations on ventral and dorsal area while erect. No erectile dysfunction. 20° up congenital. It still hurts; Taking pentox, Cialis, Q10, Hirudoid, keto diet. Considering surgery
God bless

Bud luck

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Re: I can't deal with this anymore
« Reply #18 on: September 14, 2021, 10:19:11 PM »

Nobody knows anything about this disease, what it works for one man it doesn't for other. VED can make miracles for some, but for others it creates more fibrosis. Same with traction or other therapies, surgeries, implants......
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My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My Erectile Dysfunction is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Hawk

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Re: I can't deal with this anymore
« Reply #19 on: September 14, 2021, 11:33:39 PM »

It certainly is NOT true that no one knows anything about this disease.  I also do not believe that proper use of VED or Traction causes fibrosis.  There is no such evidence found in any study.  Fibrosis that started before VED use might continue after VED use, but it is a HUGE leap to suggest that the VED caused it.

If you think no one knows anything about Peyronies Disease and, as you said elsewhere, that urologists are useless, why would you waste your time seeing Dr. Trost?
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Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Bud luck

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Re: I can't deal with this anymore
« Reply #20 on: September 15, 2021, 01:21:21 AM »

I mean to say that nobody knows how to fix peroynes completely. I do trust Dr Trost, that is why I'm flying to Utah to see him, I'm prepared to heard if my only option is surgery
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My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My Erectile Dysfunction is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46
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