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Author Topic: Fibrosis  (Read 221 times)

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willy31

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Fibrosis
« on: September 09, 2019, 11:13:50 PM »

Hi everyone,

My name is William, I’m 27 years old and I from Quebec (Canada). I have very serious urological problems. I’m addressing you because all the urologists, emergency doctors and general practitioners I have consulted have not been able to help me.

I have a lot of fibrosis in my penis (Magnetic resonance imaging and Doppler ultrasound to support it) due to a phenylephrine injection (and maybe a low flow ischemic priapism). Nearly 100% of my penis is fibrosed. It's a diffuse fibrosis and not a localized fibrosis. It's not a Peyronie disease.

The result is very significant sexual dysfunctions, a significant loss of penis size, penile ischemia exposing me to dry gangrene and various disturbing symptoms. The time hurry due to the inevitable cicatrization of fibrosis.

I have seen a total of 7 urologists and all of them offer me only penile implants without consider the dangerousness (the risks of infections and fibrosis are increased when the patient already has a lot of fibrosis like me) and the possible experimental treatments that could be attempted before considering this irreversible chirurgical surgery.

Here is my question: Could you help me please or put me in contact with a specialist who would be able to offer me a treatment (non-surgical) to solve/improve my penile fibrosis problems? I tried Trental (Pentoxifylline) 400 mg to soften my fibrosis during many months but it’s not effective for me.

I am ready to meet the good specialist for me, pay what it will cost, test experimental treatments that are in clinical trials and go to another country for treatment if necessary.

Thank you.

William
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27 years old
General fibrosis through much of my penis made worse by an injection.
My only treatments so far are Pentox 400mg for many months with no improvement.

Hawk

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Re: Fibrosis
« Reply #1 on: September 10, 2019, 06:58:25 AM »

Willy, Welcome to the forum.

Are you saying that this general diffuse fibrosis is from one injection?  If so, what was the reason for the injection?

How long have you had this fibrosis and how old are you?

Do you know if the fibrosis is defused throughout your tunica or is it in the cavernosa?

Does this condition seem to be progressing or is it static?

The only thing I know that would have any chance of reversing or countering the effects of extensive fibrosis like you describe is Xiaflex injections or Pentox (oral) which you have tried.  I am not sure from your description that a physician would consider you a candidate for Xiaflex injections. Results from Xiaflex are somewhat mixed even from more localized plaque or fibrosis.

The only less invasive general treatment I can imagine is moderate heat and VED for circulation along with a PAV cocktail which you have at least partially tried.  Traction might be advised

If an implant is a consideration, I would consult with Dr. Francois Eid who does hundreds of implants a year and has done thousands.  No doctor has a lower infection rate due to his No-touch method and his own dedicated team that always assist him.  In addition to his skill, his personality, accessibility (he will give you his personal cell phone number) make him unbeatable in my opinion.  You can do a Video consultation with him and possibly send him your imaging and medical reports before the consultation. Video consultations are $300 for 30 minutes.  https://www.edcureonline.com/

He is not the only possible surgeon you could consider but knowing his reputation, track record, and having been his patient, he would be my first choice.

Keep us posted and best wishes to you.

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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

program4004

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Re: Fibrosis
« Reply #2 on: September 10, 2019, 12:30:48 PM »

Hey Willy. I wonder if I have a similar issue. I think I have stuttering priapism. What did your doctor's suggest to do to fix it? Like I swear it feels like I'm always having erections for no reason. Even after an I hurt from two years back. This began beforehand too. Suggestions wanted. I wanna prevent any damage I can. This is serious. Also, I'm super sorry for what happened to you man. I'm hoping you get help with this.
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25,  PrePeyronies possibly, semi erect masturbation injury on Sept 2017.  Erectile Dysfunction for 2017 - Mar. 2019. Semi erect waisting, normal erections. Treatment: Vit E, rice sock heat therapy, abstinence. No official tests yet (doppler, MRI).

Hawk

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Re: Fibrosis
« Reply #3 on: September 10, 2019, 01:21:14 PM »

Priapism without erection inducing drugs is rare and mostly occurs in men with Sickle Cell Anemia.   Priapism is an erection that lasts continuously for hours.  It is NOT an erection that most subsides for a few minutes then gets first again.  That process drains oxygen-depleted blood and flushes the penis with fresh oxygen-rich blood.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

program4004

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Re: Fibrosis
« Reply #4 on: September 10, 2019, 01:43:08 PM »

Okay. That I know, there is the low flow that he has and the potential. Not diagnosed one I may have. It's super rare called high flow priapism, or even the stuttering kind and can be just as worrisome/ annoying. Mostly annoying. Like it feels like my unit never wants to stay fully soft. I haven't had that happen, but just checking to see if this is relatable. At least I can see that I can take pentox just in case  and I'll need to get those scans.
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25,  PrePeyronies possibly, semi erect masturbation injury on Sept 2017.  Erectile Dysfunction for 2017 - Mar. 2019. Semi erect waisting, normal erections. Treatment: Vit E, rice sock heat therapy, abstinence. No official tests yet (doppler, MRI).

willy31

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Re: Fibrosis
« Reply #5 on: September 10, 2019, 11:21:02 PM »

@Hawk :

Hi Hawk and thank you

I'm 27 years old.

Yes, the majority of my fibrosis is from phenylephrine injection. Because an idiot urologist did the bad diagnostic. Before this phenylephrine injection (19th January 2019), I had a little bit of fibrosis (maybe 15% or 20%, I don't know exactly). My penis was a little bit hard in the flaccid state and this idiot urologist thought I had priapism. I wasn't in an erection. He says to me: «I will give you a treatment that will relieve you». And no more explanation. The principal side effect of phenylephrine is fibrosis. Before the injection, my penis had maybe 20% of fibrosis, and just after injection, my penis was completely fibrosed (99%). After his mistake, he didn't want to talk to me anymore.

The first time I see fibrosis, I think it's maybe in 2013. I took Prozac, Risperidone and Concerta during 1999 to 2014. I stopped all medication in march 2014, but side effects continued.
Many sexual side effect including maybe priapism during the night (it's a possibility that my penis became very hard during all the night and I never saw that because I sleeping). Also, maybe I had deep vein thrombosis (it's another possibility). I take also Cialis 5mg sometimes before sleeping in 2017-2018. It's all possibilities who can explain the 20% of fibrosis before 19th January 2019. But after the phenylephrine injection, the change was drastic. A big batch of fibrosis instantly. Not evoluting like the first batch of fibrosis. DRASTIC!

Here is the radiologist's interpretation of magnetic resonance imaging: "Abnormally hypo-intense T2 appearance of cavernous bodies involving almost all of their middle and distal thirds, symmetrically with hyper-intense T2 normal appearance of the proximal third of cavernous bodies to the pillar. These hypo-intense T2 signal abnormalities appear hypo-enhancing post intravenous Gadolium. However, the subtraction sequences seem to show a slight enhancement." Conclusion: "Signal abnormalities of the cavernous corpus very diffuse in the distal and middle third of the penis and aspect hyporehaussing compared to normal."

Tunica... cavernosa... I think I don't have this information.

I think my situation to be progressing. It was progressing 2013* to 2019. Drastic change in 19th January 2019. And progressing since 19th January 2019.

Now, I'm very afraid of injections in my penis, but Xiaflex could be interesting if it's effective and not dangerous.
Does Pentox exist in injection? I take tablets.

What is moderate heat, VED, PAV cocktail, and traction? Can you explain to me more about all that and the way to try that, please?

Thank you for the link. But a urologist says to me that I have a minimum 10% of chance to have an infection because I have a lot of fibrosis. It's very dangerous. And the penile implants can't resolve my fibrosis problems...


@program4004:

Hey,

Doctors just want to put in my penis a penile implant and say to me at the same time that it's very dangerous because I have a lot of fibrosis. I'm very afraid of that.
Logged
27 years old
General fibrosis through much of my penis made worse by an injection.
My only treatments so far are Pentox 400mg for many months with no improvement.

Hawk

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Re: Fibrosis
« Reply #6 on: September 11, 2019, 06:08:21 AM »

What is moderate heat, VED, PAV cocktail, and traction? Can you explain to me more about all that and the way to try that, please?

Thank you for the link. But a urologist says to me that I have a minimum 10% of chance to have an infection because I have a lot of fibrosis. It's very dangerous. And the penile implants can't resolve my fibrosis problems...Doctors just want to put a penile implant in my penis and say to me at the same time that it's very dangerous because I have a lot of fibrosis. I'm very afraid of that.

Willy, if you just put your cursor over PAV it will pop up and explain what it is.  Also, for heat you will have to search "heat Therapy" with quotes to find many posts.  Remember that you cannot go by everything you might read on a forum.  Some guys try rubbing castor oil on their penis etc. which does not help unless possibly the rubbing it helps a little.  The main thing about heat is to BE CAREFUL to NOT make it too hot just moderately warm with hand-warmers (in your underwear) day or night, heating pad, or infrared lamp.

You are young for an implant but men younger than you have had success with them.   Do not believe what other doctors tell you about an implant before you talk to Dr. Eid.  Many doctors will give you false information as you have found out by now.  Dr. Eid will NOT try to talk you into an implant if it is not a good idea and he has the lowest infection rate you will ever find.

If you look in the forum boards below you will find entire boards on VEDs, boards on Traction.

Question:  Can you currently have sexual intercourse?  When you took Pentox how many times a day did you take it.

PS:  I don't usually do this but I put some information in your signature line that shows under your posts so members know a little background when you post.  You can change it any time in your profile.

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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

willy31

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Re: Fibrosis
« Reply #7 on: September 11, 2019, 10:56:35 PM »

Ok yes, I see. I will check that.

Yes, I'm young, but I have a really big batch of fibrosis.

Does Dr. Eid speak French? I'm not really good in English. I can speak, write and read in English, but for listen, it's very very difficult. And 300$ for the video conference, it's very expensive. I will check that in last resort.

After 19th january 2019, I just have one chance to [email protected]< with a girl (1st march 2019) but i had not enough assurance in me. I had too fear to be humiliate. And it's not very nice to have just three inch. So, I have deliberately missed an opportunity.
I don't think I'm able to have sexual relation.

I take Pentox 2 times by day.

Yes, thank you for the signature.
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27 years old
General fibrosis through much of my penis made worse by an injection.
My only treatments so far are Pentox 400mg for many months with no improvement.

willy31

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Re: Fibrosis
« Reply #8 on: September 14, 2019, 03:58:52 AM »

Do you think the stem cells therapy will be effective for me or it's just to prevent.

It's not again in the trials. But i don't see how this futur treatment could help me. 99% of my penis is fibrosed and is already cicatrized.

Anybody have informations about stem cell therapy and if i'm eligible for that?
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27 years old
General fibrosis through much of my penis made worse by an injection.
My only treatments so far are Pentox 400mg for many months with no improvement.

program4004

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Re: Fibrosis
« Reply #9 on: September 14, 2019, 05:48:17 PM »

From what I've read from guys on the forum stem cells aren't able to do anything in regards to fibrosis. Also it's not tested. Thing is there's no way YET to reverse fibrosis. They have done trials on rats and what not. But no trials on humans. For example Cystic Fibrosis is another fibrotic disease and still has no cure yet. People end up having to get lungs replaced with healthy ones. So all I can say is right now it will take maybe hundreds of years to get anywhere near fixing all fibrotic disorders. Currently all that is recommended for corpus caverosum Fibrosis is like implants. And if it's early phase pentox
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25,  PrePeyronies possibly, semi erect masturbation injury on Sept 2017.  Erectile Dysfunction for 2017 - Mar. 2019. Semi erect waisting, normal erections. Treatment: Vit E, rice sock heat therapy, abstinence. No official tests yet (doppler, MRI).
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