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Author Topic: I don’t think it’s fair  (Read 722 times)

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jakeM

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I don’t think it’s fair
« on: January 22, 2019, 02:43:23 AM »

I don’t think it’s fair for men to experience something horrible and life changing. Especially towards the youngers ones with this disease. Imagine in your teens or early 20s even mid to late 20s. Experiencing this disease. It sucks to get it so young.  It sucks in general to get this disease. However, I’m tired feeling depressed for myself. I know I have Peyroines I can feel it in my gut. And the well known Peyroines specialist listed on this forum. Will diagnose me with it.  Am I ready to find out and accept that I actually have it? Hell no, but I need to look on the bright side of life. I’m healthy, I’m not battling any illness. Yes sex may be gone for now for most of us or maybe forever as in penetration. Except oral sex is still possible. It’s not the same thing and I understand this. Believe I’ve barley had sex compare to most of the guys on here. I recently lost it in Nov. I stop having sex. Because I didn’t want  to injure myself or risk Peyroines to progress. Until I am clear from the specialist that sex is fine.  There is more to life than sex, this is hard for me to admit because well I’ve struggle with porn addiction since 19. That’s six years constantly thinking about porn and sex thoughts.  Being new to sex and wanting to explore more isn’t important right now. What’s important is learning the curves I will experience with this disease.  I probably will never be fine with having a non penetration sex life. However, life will continue for me and I will make the best out of it.  I used to be angry and I blame my past that I cause myself to have Peyroines due to excessive masturbation. Since 19 up to 25.  In July that’s when I found out about this disease existing thanks to google. When one day I google, “why does my penis curve”. Peyroines pop up and this forum pop up also.  I haven’t experienced any changes from my post “Could this be Peyroines?” thread, maybe it is stable for now who knows. Life isn’t fair but we have to learn to deal with it and move on. As hard as that sounds, especially for me. Who struggles with moving on from the past. My brothers/friends are sick and tired of me complaining about the past and complaining having this disease.  I literally complain everyday. And I’m making myself more depressed because of it.  Well no more, time to move forward and leave it behind me. A new chapter for all of us!
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I don't have peyroines, I thought I did.
Too much info on the internet can be a negative thing.
ultrasound duplex doppler results: great
They felt for plaque, nothing.
I have a coginetnal curve. Mild 15 degrees left, 10  degree downward curve.

TonySa

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Re: I don’t think it’s fair
« Reply #1 on: January 22, 2019, 04:09:36 AM »

Hi Jake, I returned your msg. Tony
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

Bubba dawg

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Re: I don’t think it’s fair
« Reply #2 on: January 22, 2019, 06:18:08 AM »

 1st Nothing much in life is fair. Sometimes there seems to be no rhyme or reason to anything without getting into religion aspects. If life were fair there would be no need for children's cancer clinics, for example.  Second, it is important to have some form of sex ie intercourse or masturbation to help keep the prostate healthy. So it is important to have Peyrones treated in some way just for that reason
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Comoseanpenn

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Re: I don’t think it’s fair
« Reply #3 on: February 21, 2019, 10:37:16 PM »

I'm not in my 20s anymore but I am only 34 newly diagnosed. All my life I struggled with issues of the size of my penis , and now it will be smaller... I am single and don't have children and have several prospects for relationships, they all seem compassionate but I still fear having to say it hurts to have sex. I would like a spiritual approach to this malady and it takes support , if you want to talk about it I'll give you my number and we both will benefit I believe. Good luck brother.
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I have been traveling in South America for 7 months and this problem developed while abroad. Help with expectaions and knowledge is greatly appreciated.

popopo

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Re: I don’t think it’s fair
« Reply #4 on: February 22, 2019, 11:33:54 AM »

It's definitelt not fair. But such is life. A strong man in his 50's (husband of my aunt) is dying of cancer. He used to be very buff and now he looks like a skeleton and will pass away soon. A nepphew of mine got hit by a car while riding a motorcycle, the bone in his leg was shattered and you would think they can fix such an injury, but he will probably have difficulty walking for the rest of his life cause it healed badly. The son of my dad's workout pal has a big tumor like bulge in his neck and had it for years. He might never have a normal neck again. These are just some of the examples how life can screw you. All we can do is hope people can overcome this problems in the future and try the treatments available now. Nothing about this is fair, but that's life.
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Age: 24
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

Hawk

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Re: I don’t think it’s fair
« Reply #5 on: March 01, 2019, 03:55:15 PM »

Before continuing the psychological discussion let's First correct misinformation and get one thing in perspective.  It is almost unheard of that a man with Peyronies Disease would ever have to say goodbye to penetrative sex.

An outpatient implant by a great surgeon can fix most severe bends and restore erectile functioning to that of a healthy 18-year-old.
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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

Whyisthishappening

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Re: I don’t think it’s fair
« Reply #6 on: March 01, 2019, 06:06:53 PM »

but there are some patients who are never out of the inflammantory state .for them even an erection inducing injection or a palpation examination of  urologists ,could aggravate their symptoms,any kind of surgery is not good for these patients.
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Hawk

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Re: I don’t think it’s fair
« Reply #7 on: March 04, 2019, 12:03:00 PM »

... patients who are never out of the inflammatory state .for ...,any kind of surgery is not good for these patients.

Did a top surgeon tell you that or is that just your logical assumption?
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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

Whyisthishappening

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Re: I don’t think it’s fair
« Reply #8 on: March 04, 2019, 01:27:18 PM »

If still in active phase surgery is prohibited ,there are publications
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alc ,vitamin e, propolis,pde5,NAC,nsaids,olive oil massage,nsaids,aspirin,essential oils cockteils,keto,IF,green tea,coffee

Hawk

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Re: I don’t think it’s fair
« Reply #9 on: March 04, 2019, 11:03:44 PM »

Can you reference the publications that say you cannot or should not have an implant unless you are totally out of the active phase so we can read exactly what they say?
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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

Whyisthishappening

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Re: I don’t think it’s fair
« Reply #10 on: March 05, 2019, 09:30:12 AM »

Peyronie’s disease: contemporary review of non-surgical treatment
Laurence A. Levine
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708604/
 Surgery remains as the gold standard treatment and the most rapid and reliable treatment option once the disease process is STABLE


Candidates for non-surgical treatment include those in the active (acute) phase, which is defined as less than 12 months from onset of symptoms, those who have unstable progressive deformity and plaque, painful erections (particularly to palpation or with development of erection), and any patient who is not psychologically ready or interested in surgery regardless of the duration or severity of their disease

Surgery remains as the gold standard therapy, but should only be offered when the patient is in the stable phase and understands the risks of incomplete straightening, further loss of length, diminished sensation, and erectile dysfunction.
 

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alc ,vitamin e, propolis,pde5,NAC,nsaids,olive oil massage,nsaids,aspirin,essential oils cockteils,keto,IF,green tea,coffee

Whyisthishappening

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Re: I don’t think it’s fair
« Reply #11 on: March 05, 2019, 09:31:51 AM »

unless you don't consider implant a surgery
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alc ,vitamin e, propolis,pde5,NAC,nsaids,olive oil massage,nsaids,aspirin,essential oils cockteils,keto,IF,green tea,coffee

Whyisthishappening

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Re: I don’t think it’s fair
« Reply #12 on: March 05, 2019, 09:47:52 AM »

or levine an expert
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alc ,vitamin e, propolis,pde5,NAC,nsaids,olive oil massage,nsaids,aspirin,essential oils cockteils,keto,IF,green tea,coffee

Whyisthishappening

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Re: I don’t think it’s fair
« Reply #13 on: March 05, 2019, 09:51:40 AM »

i know implant is good ,perfect for some people ,as xiaflex is for other but its not for all
When concomitant erectile dysfunction is present, insertion of an inflatable penile prosthesis is recommended
https://www.ncbi.nlm.nih.gov/pubmed/27544298
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alc ,vitamin e, propolis,pde5,NAC,nsaids,olive oil massage,nsaids,aspirin,essential oils cockteils,keto,IF,green tea,coffee

Hawk

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Re: I don’t think it’s fair
« Reply #14 on: March 06, 2019, 11:47:43 AM »

Thanks for the links, the first link offered no evidence only impressions and summarily dismissed Pentox as not being recommended.

Also, an implant is NOT just for situations where Erectile Dysfunction is also present.  Dr. Eid regularly used implants to straighten significant deformity (greater than 90 degrees) without Erectile Dysfunction

I am going to pose this question directly to Dr. Eid.
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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

Whyisthishappening

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Re: I don’t think it’s fair
« Reply #15 on: March 06, 2019, 01:47:25 PM »

you questioned the validity of my post regarding active phase Peyronies Disease and surgery,do you still believe is ok to have surgery in that phase regardless of Levine's publication?
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alc ,vitamin e, propolis,pde5,NAC,nsaids,olive oil massage,nsaids,aspirin,essential oils cockteils,keto,IF,green tea,coffee

Hawk

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Re: I don’t think it’s fair
« Reply #16 on: March 06, 2019, 04:48:13 PM »

I question everything. 

That is why I founded a forum rather than leave men with one lone "expert's" comments on such things as "VED's are useless", "Traction is a waste of time", "Pentox is a waste of time", and then "Colchicine might help".  All of these are statements from highly respected Peyronies Disease specialists and all of these statements have overwhelming evidence that says they are misinformation.

I respect Dr. Levine but I do not consider him to be infallible and there is no serious diagnosis in which I would not at least seek a second opinion.  I hope this forum has served to educate others on the importance of questioning.
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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

Whyisthishappening

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Re: I don’t think it’s fair
« Reply #17 on: March 06, 2019, 05:20:18 PM »

i am grateful for this forum ,without it i would be completely lost i really thank you,but its a FORUM  it is the best  for Peyronies Disease because a lot of people contribute in many ways,also you demanded references to support my opinion except my "logical" explanation of further injurying an inflammed tissue  under surgical  operation.I hope you don't still believe  its good to operate an inflammed and painful tunica albuginea.And thanks again for this forum.
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Hawk

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Re: I don’t think it’s fair
« Reply #18 on: March 06, 2019, 06:39:02 PM »

It is important that we be critical thinkers.  We must analyze all opinions and evidence.  For example, you said I "demanded references".  In fact, I did not demand anything. I asked for references.  Anyone making a bold statement as though it is fact should automatically supply references without being asked.  We should all be in the mode of expecting to do that and expecting that from others.  It just makes good sense.

You also said you hope "you don't still believe its good to operate on an inflammed and painful tunica albuginea." 
If you will read my comments you will see that I never suggested that I think it is a good idea to operate on an inflamed penis in the active (acute) phase of Peyronies Disease.  I simply asked for evidence to support your conclusive statement that such a person is not a candidate for implant surgery.

I wanted to know if there is: no evidence but only opinion, weak evidence, moderate /contradictory evidence, strong evidence, conclusive evidence, or proof.
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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
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