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JS1991

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JS1991 Timeline
« on: February 22, 2018, 06:26:23 PM »

Hello, everyone! I'm 27, and I'm from New York. Here is my story:

October 2017 - December 2017: Began using cocaine recreationally and having wild sex. I might have developed what NeoV refers to as "pre-ronies" in this time, as I noticed a soreness, but I honestly have no idea; that could have been due to the excessive usage.

January 12th, 2018: While having sex on ecstasy and for ~6-8 hours straight (with breaks; I knew about Priapism and was very worried about it) I completely and spontaneously lost my erection towards the end. Was able to finish afterwards, though.

January 19th: From the 12th until this point I honestly didn't notice any symptoms. On this night I masturbated for a prolonged period on cocaine. No issues, but my penis was extremely sore that night, and from that day forward I have had some of the classic Peyronie's symptoms which I had not had before: sore penis, lost girth, 10-15 degree curvature to the left in the top 1/3 of my penis.

January 19th-28th: I did not know what was going on and engaged in normal sexual activity, which did not include drugs but did include 1-3 orgasms per day via masturbation or sex.

January 29th: Through research, I realized something was seriously wrong, diagnosed myself with Peyronie's, and began more intense research.

January 30th, 31st: Began cutting down drastically on sexual activity, going from two orgasms/day to an average of two/week.

February 1st: Began manual traction.

February 7th: This incident occured: Corpus Spongiosum progress. - Peyronies Society Forums which I believe was the onset of my CPPS.

February 12th: Took a break from traction, heat, erection checks, and sexual activity (which I was having trouble abstaining from); complete rest for my penis, no touching.

February 13th: I received CoQ10, L-Arginine and Acetyl L-Carnitine in the mail. Began taking all three.

February 14th: At night, I realized that my corpus spongiosum and glans had mostly refilled and the numbness I had was a lot better, as well as the pelvic floor tension.

February 19th: Restarted heat and traction therapy.

February 23rd: Received Cialis. Began taking 5mg orally.

March 6th: Had my first urologist appointment. Got officially diagnosed with Peyronie's, and referred to a Peyronie's/ED specialist, and argued intensely about whether or not I have mild venous leakage; he believed I didn't, I believed I did.

March 13th: Received and began taking Pentox most of the time from this point forward with occasional lapses because I'm ordering it from Mexico.

April: Reduced Cialis dose to 2.5mg due to difficulty abstaining. Further reduced Cialis to zero due to difficulty abstaining from sexual activity; I consider abstinence more helpful. Also stopped heat therapy, as it was irritating my CS/urethra.

May 5th: Saw a second urologist that specialized in ED. I was told the issues with my spongiosum/glans that I believed were venous leakage could be CPPS, which I now believe is correct.

May 26th: Scheduled a consultation with US Stem Cell Clinic for June 5th.

June 14th: Received an ultrasound and no scar tissue was found on the ultrasound other than a small amount going down the length of the cavernosum where it stops and the corpus spongiosum/urethra begins, although my uro did acknowledge a broad area of the shaft felt thickened. My uro, who scoffed at my alternative treatments such as Pentox and traction at first, admitted that they perhaps have contained my plaques thus far.

June 16th: Stopped all oral supplementation including Pentox/Cialis in preparation for stem cell therapy.

June 25th: Quit smoking marijuana and cigarettes, as well as drinking alcohol.

June 26th: Received Adipose-Derived Stem Cells suspended in Platelet Rich Plasma via four injections directly into my penis. Two at the base on either side, two under the head on either side.

July 3rd: Began vaporizing THC at a low temperature.

July 14th: Received prostate examination, was diagnosed with a slightly enlarged prostate, and again suspected non-bacterial chronic prostatis/chronic pelvic pain syndrome. Was put on stool softener (not sure why) with planned pelvic floor physical therapy if that doesn't do anything. Was given a date in late August with my uro for a visual analysis of my urine stream.

August 9th: Restarted all oral therapies and heat therapy.

August 13th: Measured myself in preparation for VED. There is a half inch girth gain towards the tip of my penis that I attribute to stem cell therapy.

August 15th: Began VED therapy. After the first night of pumping, my penis feels less like it is divided into sections, and now feels more whole.

August 22nd: Saw Urologist, was prescribed a week of high/max dose (2400/mg day) Ibuprofen and several other medications to combat chronic prostatitis/CPPS which is the cause of my hard flaccid, tense pelvic floor and partially deflated glans/CS.

September (current penile status): The CPPS provides the most aggravating symptoms at the moment including pelvic floor discomfort, hard flaccid, partially deflated corpus spongiosum/glans, and pain after ejaculation. I still get full blown erections off of thought alone, morning erections, full erections, etc. Palpable plaque located as a fibrotic hourglassing effect in the top quarter to third third of penis, mainly on the left (hence my slight curve). Also have a small but deep dent under the head to the right (now a lot more shallow and smooth after stem cells). Some slight waisting/atrophy is present mid shaft with a 1/4 inch girth loss, as well as denting middle left and right, lower right and loss of girth of half an inch (5.5 to 4.5 then back up to 5.0; improved by stem cells) toward the tip. Curvature is 5 degrees to the left, in the top 1/4 of my penis.

Oral Doses:
Pentox 1200mg/day
CoQ10 300mg/day
L-Citrulline 1500mg/day
Acetyl L-Carnitine 2000mg/day
Cialis 2.5mg/day

Regrets: Not fully abstaining from porn, masturbation and orgasm for the duration of my Peyronie's. Not being on Pentox earlier, and more consistently while in the crucial early/acute phase. Not starting VED immediately to prevent girth loss; I had believed it would not be helpful during the active phase, I have since been convinced otherwise and am kicking myself in the a$$ over it.

Thoughts: If you still have decent erectile function and you are abstaining from sexual activity, be careful when applying traction, as you could gain an erection mid-stretch and hurt yourself. This goes for hard flaccid as well. Seat warmers on full blast in cars work wonders on tense pelvic floors, as do "donut" cushions. Some supplements can taste and smell nasty. Never manipulate your erect or semi-erect penis in any way, shape, or form. Try not to orgasm more than twice per week; the longer you abstain, the better (the goal is to reduce inflammation). When I do squats at the gym, my glans/cs almost completely refill for a few days. I believe if one uses VED in the acute phase they should take Pentox to prevent further aggravating scar tissue. And most importantly: Stay positive. It has helped me immensely, and I notice that my penis has a lot of trouble performing at the first sign of anxiety or depression. Stay mentally strong! I'm still pursuing women. Although my Peyronie's was most definitely self-inflicted, I do not regret my actions. Would I prefer not to have these afflictions? Of course. But I thoroughly enjoyed each and every night in those few months.

Future: I'm going to start doing pelvic floor exercises/stretches soon, as well as physical therapy (trigger point) and want to do a 7-90 day water fast while fully abstaining followed by a ketogenic/intermittent fasting diet in order to release my pelvic floor muscles and alleviate my hard flaccid/soft glans symptoms. Check the Stem Cell thread for more info on my treatment. My number one priority at this time is not causing any further injury to myself. I also have been keeping photo record of my little buddy's journey, which I may or may not post. I'll update this thread as much as I can. Also, check out Neo's YouTube channel on Peyronie's: https://www.youtube.com/channel/UCjX1naIryWc6pennKOHWbgg/videos it's great and has helped guide and comfort me throughout this entire process.

Good luck to you all in your own journeys.

-JS

diehardpatriot

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Re: JS1991 Timeline
« Reply #1 on: February 23, 2018, 12:31:12 AM »

Thanks for the information. It’s great that you’re tackling this head on. Good luck
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17 year old who had stable peyronies. Now battling a new acute injury. Don’t know wtf my symptoms r

Christopher1

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Re: JS1991 Timeline
« Reply #2 on: April 09, 2018, 04:44:44 PM »

Any update on the stem cell?

I also have venous leakage by the way. I never wake up with morning erections and my testosterone levels are fine (upper normal limit).
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Werther

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Re: JS1991 Timeline
« Reply #3 on: April 10, 2018, 09:15:11 PM »

I'm interested too so let us know when/if you've done something with stem cells.

By the way, I read on the Stem Cells' thread that you were planning to see or call Dr. Zahalasky, who published a study in 2015 and reported some sort of miracolous results for Peyronie's patients who underwent his trial (such as total disappearance of plaque/plaques: https://www.ncbi.nlm.nih.gov/pubmed/26414724); just so you know, I wanted to tell you that I contacted his clinic via e-mail and I've had a response from an associate who told me that they're now using "growth factors" to treat patients with peyronie's and venous leakage; I believe that this is a reference to PRP and in fact I asked for futher delucidations on this point, but I had no answer back. It would be interesting to know what they're actually using and, in case they changed their first tested formula, why it happened; maybe their claims were BS? If it's like that, let us know: we all are here to inform each others as much as possible and nobody want to see snake oil salesmen and waste money with them.
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Paolo

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Re: JS1991 Timeline
« Reply #4 on: April 11, 2018, 02:43:43 AM »

This takes you directly to link https://www.ncbi.nlm.nih.gov/pubmed/26414724
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JS1991

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Re: JS1991 Timeline
« Reply #5 on: May 31, 2018, 04:09:08 AM »

diehardpatriot, thank you for the kind words!

Werther, Dr. Zahalsky speaks of amniotic fluid when referring to "growth factors" that he uses. I'm unsure if they contain actual mesenchymal stem cells (MSCs) or if it is just made up of various "growth factors" other than MSCs, as he said. Did you get a price from him?

Also, I updated my timeline a bit.

hope794

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Re: JS1991 Timeline
« Reply #6 on: May 31, 2018, 04:57:42 AM »

JS, you're the best!!  Thank you for sharing. Keep writing your progresses here!

P.s. = i didn't understand completely what this stem cell treatment is about. Has it been approved, or it's a clinical trial? And, most importantly, was it useful for other ppl?
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JS1991

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Re: JS1991 Timeline
« Reply #7 on: May 31, 2018, 06:03:38 PM »

It is not FDA approved in the US, but it is available as a treatment if one is willing to pay (it is not covered by insurance). This is the clinic I plan on going to: Home - U.S. Stem Cell Clinic , here are three more I was looking at: https://www.cellmedicine.com/ , UroCellz - Dr. Michael Zahalsky , Lander Regenerative Urology | Certified Diplomat of the American Board of Urology .

I will compile and post a collection of studies pertaining to Peyronie's and stem cell treatment when possible as well.

HereNow

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Re: JS1991 Timeline
« Reply #8 on: August 21, 2018, 06:35:10 PM »

I read your journey and some of what you're describing sounds akin to my issue, ex. "my penis feels as if it's segmented as opposed to whole" in terms of what does and doesn't get it erect. Did you notice any wrinkling or loss of sensation your own case? I've developed dark wrinkles along my penis, and a google search says it's potentially the result of damage to my corpus cavernosum (and would make sense, with the "pop" that I heard also being a symptom of a penile fracture, as well as the ensuing weirdly-soft sensation that I had around the skin where the pop had occurred.) At the same time, my doctor says he can't feel any scar tissue, and the blood flows like it should, according to him anyways. Have you noticed any of these things?
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hope794

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Re: JS1991 Timeline
« Reply #9 on: August 21, 2018, 06:38:55 PM »

Hello JS1991 how is it going bro?
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JS1991

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Re: JS1991 Timeline
« Reply #10 on: August 24, 2018, 04:16:02 AM »

HereNow, I do have slight sensation loss in the head of my penis and the under side (urethra area) as well as "hard flaccid." My penis feels a bit segmented as in there is literally a line; a sort of "seam," that is seperating my penis on either side in to three strips running from head to base: the top portion, the left portion, and the right portion. Stem cell injections helped slightly, and VED helped greatly. I do not have any dark wrinkles or any damage to my corpus cavernosum other than the Peyronie's plaques (or scar tissue) that is present. I've also never had a penile fracture.

hope, I'm doing great. My timeline is updated, take a look!

Stem Cell Studies:

A collection of studies on SCs for Erectile Dysfunction by Dr. Tom Lue (human): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209555/

A collection of studies on SCs for Peyronie's Disease (rat and human): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4893505/

Zahalsky's study on SCs for Peyronie's Disease (human): https://www.ncbi.nlm.nih.gov/pubmed/26414724

"Expert opinion on biological therapy" for Peyronie's Disease: https://www.ncbi.nlm.nih.gov/pubmed/28274142

Stem cell "homing" with ultrasound (with collection of studies): https://www.fusfoundation.org/mechanisms-of-action/stem-cell-homing

And I have more that I'm searching pertaining to fasting and VED, will edit them in when I find them.

Christopher1

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Re: JS1991 Timeline
« Reply #11 on: August 25, 2018, 07:10:53 PM »

Amazing thread.
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