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Author Topic: Peyronies has receded  (Read 4757 times)

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fugluten23

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Peyronies has receded
« on: January 09, 2017, 07:03:17 PM »

Hi all - I'm new here but let me tell you a little about my story. I'd love to hear some feedback, whether it be supportive or critical. This entire ordeal lasted only 7 weeks (there could be more but right now it has fully receded).

When did this start?

About 7 weeks ago I started to feel a pain in my erection within the center/bottom shaft closest to the head. I had never experienced any pain in that area - I'm only 29 - so when this happened I thought maybe it was an STD. I spent about a day or two frantically searching the internet for an answer. As the search continued for answers throughout those few days, the pain grew worse. I stumbled on the peyronies forums and the symptoms were an apples to apples match with what I read (no pun intended). I wasted no time and saw a urologist. He did an exam and found a hard lump in the area I was experiencing pain. He concluded that it was in fact peyronies disease and that I probably suffered an injury (he couldn't be sure when) and that this unfortunately resulted. Let's call this urologist doctor #1.

Here was doctor #1's suggested plan.

1. Prescription of ciprofloxacin 500mg twice daily for two weeks with one refill.
2. Anti-inflammatory (advil and such) daily with maximum dosage

Because of Doctor #1's limited experience, overly simple treatment plan and the discrepancy of what I had been reading online from the things he said - I quickly thought to myself that my answers were not to be found here. I ended up taking the antibiotic for two weeks but did not take any anti-inflammatory OTC.

What did I do after Doctor #1?

So I mentioned that I took the antibiotic for two weeks and you are probably wondering what effect it had if any. I'll get to that, but lets back up a little bit to the end of the first week of having this (I was diagnosed about 3 days after experiencing the pain). At the beginning of week 1 before the diagnosis, I was in mild pain but was able to have an erection. After the diagnosis and by the end of week 1, where I am now in this story, the pain had increased tenfold and was causing severe erectile dysfunction. The penis couldn't fully extend and there was a sharp downward curvature. The curve started closer to the end of the shaft and after the curve, the penis couldn't get hard and just kind of dwindled like it was broken. Very very painful.

I was a self taught nutrition counselor in one of my previous jobs and had much success in that area and I've had a lot of exposure to natural healing, physical therapy and other like fields in my life so I had a decent understanding and foundation to work with in this research endeavor. At the end of week 1, I was fully engulfed in the world of peyronies disease and researched countless supplement remedies, anecdotal evidence and patient testimonies in many forms. After a few days of researching (I'm a little into week 2 now) I formulated a full blown self developed treatment plan that including a bunch of oral supplements and as topical supplement.

Here is my self developed peyronies treatment plan that I started taking early in week 2. This doesn't include the antibiotic (taken twice daily) which I stopped taking at the end of week 2.

Morning -
1. L-Arginine 1000mg

Afternoon -
2. Coenzyme Q10 100mg
3. Acetyl L-Carnitine 500mg
4. Vitamin E Complex 200 IU (mixed tocopherols and tocotrienols)

Night -
5. PABA

Topical -
Organic Castor Oil (to be applied to lump area when waking up erect or after masturbating)

So let me just make this reminder. I had seen Doctor #1 already leaving with no confidence in his knowledge or treatment plan.
I named him Doctor #1 because there will be a Doctor #2 in this story down the road but I want to enter timeline mode to tell the story of the supplements and what happened over the course of the next 5 weeks (which includes Doctor #2 towards the end).

So week 1 was discovery, ddiagnosis and self-educational research. Week 2 was the beginning of the self developed supplement plan. At the end of week 1, the pain was very acute but manageable. At the end of week 2, the pain was more broad, more severe and caused erectile dysfunction and a severe curvature.

Week 3
Supplement plan continues...
I'm practicing abstinence to try and keep the pain. I try to masturbate a few times but to no avail with the problems still persisting that were present in week 2.

Week 4
Supplement plan continues....
Did I mention I'm 29? My urges got the best of me and I found a way to masturbate but with a softened penis. It wasn't fun but when I was able to ejecalate I had a full erection that kind of stretched the curvature into a straighter line but it was accompanied by extreme pain. The extreme pain existed after but not during the ejaculation. I thought I maybe made it worse and kind of panicked a little.

Week 5
Supplement plan continues....
I masturbated once in week 4 with an extremely painful result so I wasn't encouraged to try again. However, my urges again got the best of me. I tried again and to my surprise the pain was a tiny bit reduced but still very bad. The curve had straightened a tiny bit also and I was able to hold a harder erection for longer. I thought maybe I was just getting used to the pain and wasn't sure it was receding or not.

Week 6
Supplement plan continues.
I masturbated once in week 5 with more progressively successful results but no where near normal. I found the pain when waking up with an erection was subsiding quite drastically which I thought was attributed to me just being too sleepy to really feel it (or again, just me getting used to it more).

Here, in week 6, is when I saw a second urologist. This time, the doctor was world renowned urologist practicing out of Memorial Sloan Kettering in NYC. The doctor was definitely one of the best doctors I have ever met with but he wasn't without faults. I'm pretty skeptical of doctors if you haven't caught that yet with me so it is tough for them to convince or impress me.

I explained to Doctor #2 everything that had occurred over the last 5-6 weeks. After a much more thorough examination then what doctor #1 had done, Doctor #2 concluded the same diagnosis but couldn't understand why the doctor before me prescribed the antibiotic. He was also baffled by my supplement plan and referred to is as garbage and scam induced. He explained the science and it made sense but didn't leave me feeling completely confident in my understanding (or maybe because his science had some holes in that I couldn't prove). Either way, he prescribed a traction device to be used 4 hours a day for a month and then we would take it from there. He told me surgery was probably in the cards and that he wanted to do a curvature test with an erection induced by injection after that month.

I never ordered the traction device and thought to myself that he seemed way to quick to dismiss a holistic treatment plan and replace it with a surgical one (one that would probably cost upwards of 12k). I explained to him how things had gotten slightly better but he hesitated and dismissed my claims. I believed him and was convinced this would maybe return, but I was not convinced to stop taking the supplements. They couldn't hurt me so why not keep taking them, right?

Week 7
Supplement plan continues....

Week 6 was a big week. I saw progress and Doctor #2 refuted it and wanted to replace my self prescribed treatment plan for a traditional surgical plan. This was a world renowned urologist and at one of the best hospitals in the country. I didn't trust him though.

I know you are probably thinking, why am I giving a timeline in a week by week fashion when this will most likely go on for another year or so maybe? Well, that is the amazing part. My story ends here. I woke up and tried to masturbate at the end of week 7 and the pain and curvature was 100% gone. I couldn't believe it and still can't. I'm not sure if this is a temporary recession but I never once saw a fluctuation in pain, just a steady increase or decrease but zero fluctuations. I'm not going back to either doctor and I am now moving on with my life happily.

You might be thinking to yourself also, this has to be one of the rare 10% of cases where spontaneous remission occurs. I would argue this wasn't spontaneous or random. I've also had severe IBS issues (also celiac) over the last 8 YEARS and have done everything I can to aid it with a picture perfect diet and other remedies. I've always had daily rotations of constipation or
diarrhea but have rarely had good bowel movements. Around week 4-5 of this peyronies disease story is when my IBS started to dissipate. By now, week 7, both my IBS and my peyronies disease is completely gone. I've now gone three weeks of clean and perfect bowel movements when the longest stretch of good bowel movements I've had in the last years stretched maybe a day or two if I was lucky. I've now gone 3 weeks of clean bowel movements which has improved my mood, energy and health drastically. I can't eat gluten still (celiac) but my diet has expanded greatly since my IBS has improved. I've been eating foods that typically would really flare up my IBS but I'm digesting and processing like my intestines are made of iron now.

I don't believe that the healing of these two conditions at exactly the same time are any coincidence. The probability is near impossible (at least I think so) that this occurred randomly and at the same time as each other. The supplement plan is the only common denominator I can think of.

I'm going to continue the supplement plan and I'll post back a progress check in a few weeks to keep anyone who follows this updated. But I'm healed for now on both fronts and couldn't be happier. If anyone has any feedback, insight or even criticism into any element of what I posted, feel free to respond as I am always eager to learn more or share more details of this experience to help others.



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fugluten23

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Re: Peyronies has receded
« Reply #1 on: January 09, 2017, 09:19:31 PM »

The only reason I didn't do the traction is because the recommendation for it came too late and my recovery happened too quickly for it to make a difference or have a real impact, at least right now. If I still had a curve I would absolutely add this to my treatment plan but since it is gone now (at least right now) I don't see a need for it.

I agree that the remission seems oddly quick for peyronies and I can't fully comprehend it (partly why I posted here beyond just wanting to share my experience and help others). The thought occured to me that maybe I was misdiagnosed but the curve was pretty drastic early on (I didn't measure it but if I had to guess maybe 20-30 degrees) and the pain and lump were pretty evident. It all seemed to match peyronies and the doctors after their exams fully agreed and gave me the diagnosis but I'm skeptical as well.

As you said though, regardless I definitely want to share this experience and vet it fully with others and maybe gain a clearer understanding if possible.

Regarding my IBS, I've gone to countless doctors of all kinds and have never gotten good help from any of doctors I've seen. I believe after this supplement treatment plan results that they are connected somehow. The celiacs is what it is unfortunately and I just stay away from gluten entirely and have been better off since I eliminated it from my diet fully years ago. But my IBS always raged on until 3 weeks ago when both that and my peyroines disease cleared up. I'm actually enjoying a batch of gluteb fre buffalo wings tonight, something I could never eat with my IBS. I've eaten it twice in two weeks and have had no adverse effects whatsoever. If I ate that 2 months ago or two years ago I would have severe intestinal issues and be in a cloudy foggy bad mood for days until my intestines recovered. No issues now whatsoever.

I'll make sure I post back any updates on my recovery and/or progress. Thanks for the posts and insights so far. This is a great and informative forum and I'm excited to learn from you guys.
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fugluten23

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Re: Peyronies has receded
« Reply #2 on: January 10, 2017, 01:53:00 PM »

Quote
...this has to be one of the rare 10% of cases where spontaneous remission occurs
A big YES

James

The only thing that makes me believe this wasn't a "spontaneous remission" as opposed to a total recovery is the fact that my IBS improved drastically to the point where it is non-existant right now. If I were to chart the progression of healing of each issue and the timing (peyronies and IBS) on a graph and compare side by side they would be almost identical. I've been dealing with peyronies for only about 2 months and I've been dealing with IBS for almost 8 years. Without the IBS component to this story, I'd chalk it up entirely to spontaneous remission but the evidence points me in another direction - but I admittedly don't know enough to draw any strong conclusion.
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fugluten23

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Re: Peyronies has receded
« Reply #3 on: May 13, 2017, 08:50:17 AM »

I was asked to post an update of my Peyronies status which I'm very happy to do. Since the time of my posting, I'm still free and clear of Peyronies.

My focus entirely has been on my IBS, which I believe if in check will also keep Peyronies in check and so far everything has been great on both ends. I've been supplementing regularly with strong probiotics to promote regular and steady bowel movements. After masturbation, I apply castor oil to the penis as a precaution but have not had an issue with Peyronies or IBS in many months. I don't take any of the supplements that I took during my treatment anymore and didn't have much success with digestive enzymes (they just made me bloated and actually made it harder for me to pass stool cleanly). I choose to stick with my tried and true probiotics, which if I don't take regularly then my IBS does come back in small ways (I've tested this).

I'm not sure if this is a phantom feeling (in my mind) but if I masturbate anymore then 1x a day then I do feel like Peyronies has the potential to come back. It's a tiny feeling in both my mind and my shaft that evaporates rather quickly but I always feel like the potential is there. It actually forces me to be more selective in the girls I have sex with as well because my feeling is if Peyronie's does come back somehow from rough foreplay or rough sex then I'd rather it come back with someone that is worth it and not just some random hookup. Again, this may all be in my head but it is definitely a paranoia I must live with after this experience.

I must comment though that after all this time I have reflected a lot on my experience and my un-trained thinking really leads me to still believe that the two biggest contributor supplements (although some probably believe this is just spontaneous remission - I don't) were PABA and Acetyl L-Carnitine but more specifically the timing of when I took these supplements. The more I read about IBS and diseases of this nature, the more I see evidence stacking towards certain Vitamin B deficiencies and PABA seemed to help restore that temporarily but to a point where clean eating and dieting took the baton and continued to run the race. Again, I'm not a doctor and don't pretend to be an expert on these things but that is just my feelings on the matter based on my individual research and experience.
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