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Author Topic: Newly diagnosed with Peyronies Disease  (Read 4319 times)

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whiterol

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Newly diagnosed with Peyronies Disease
« on: August 05, 2013, 11:54:12 AM »

Hello Everyone,

I am newly self diagnosed with Peyronies Disease. I have all the symptoms and would like to hit the ground running to halt or reverse this dreaded disease. Any and all suggestions on how I should proceed would be highly appreciated.

Here is my story:

I discovered a lump inside my penis just a few months ago on May 23rd, 2013. I immediately searched the Internet for possible causes as my fear was it was some form of cancer. I instantly found information about Peyronies Disease which relieved my fear about cancer but also caused depression.

I am a 52-year-old male in pretty good health. I am a competitive cyclist and eat a mostly raw vegan diet. I have no major health issues such as diabetes, high blood pressure, high cholesterol etc. In fact, I actually have and have always had low blood pressure. So low in fact that my doctor refuses to prescribe Viagra or Cialis for fear that it will lower my blood pressure even more and cause me to pass out.

My disease seems to have come on and is advancing very rapidly. I seem to have quite a few more lumps of plaque on the left side of my penis then I originally noticed just a few months ago. These lumps cause a curve to the left as well as an upward curve in my penis. I also have a couple of lumps of plaque on the right side of my penis that was causing a curve to the right as well.

I do not have health insurance. I went to the doctor for an STD screen and a Cialis prescription but didn't expect or receive much information on how to treat Peyronies Disease. I told him about my Peyronies Disease and although he had heard of it he had no real knowledge of what it was or how to treat it. However he did suggest that I see a urologist but I have yet to do so as I would like them to be a specialist in Peyronies Disease and the urologist he recommended is not.

The only treatment that I have tried so far is vitamin E. I just found this forum a few days ago and I've been reading through all the posts trying to get an understanding of the best practices to treat this disease. I've already ordered an Osbon Esteem off eBay and would like additional recommendations from the members here on what else I should be doing.

The psychological issues caused by discovering I have Peyronies Disease have been pretty severe at times. It was really depressing to have gone through all the trouble to improve my health, reduce my weight and improve my physique only to find that now that I can attract the opposite sex, I can't do anything with them. Finding this forum has given me hope.

Now, I have a theory about how I developed Peyronies Disease. I think it may have come from lack of use of my tool. I have been celibate for over two years and during that time have had very few erections. And the erections that I have had have been very weak. Note that I have not sustained any type of injury or trauma to my penis.

Also, I read on this forum about glucosamine being suspected as causing Peyronies Disease. Well it just so happens that I have been taking quite a bit of glucosamine lately for knee pain. I immediately stop taking it when I read that it could play a part or aggravate Peyronies Disease. I was taking about 1000 mg per day.

I have been taking some vitamin E but very sparingly and erratically. I would like recommendations on what I should be taking and how much so that I can start a regiment to halt and possibly reverse this dreaded disease.

Achieving an erection during masturbation requires lots of effort. I usually can only achieve a very partial erection before finally reaching my climax. Masturbation became so unenjoyable that I eventually quit. I also noticed that I hardly ever achieved nocturnal erections or had any type of sex drive. I can't remember the last time I had a wet dream. And when it comes to female attraction, it takes nearly a perfect 10 to get any kind of rise out of me.

I have not seen a specialist about my Peyronies Disease problems. I do not have health insurance and that is why the first thing I do when I have any type of illness or symptoms is turned to the Internet. My results are often better and much cheaper than seeing a doctor anyway. I am so happy to have found this forum. It did cross my mind that lack of use cause my Peyronies Disease and Erectile Dysfunction problems, but I never thought about using a VED to maintain penis health. I've already ordered a (claimed) brand-new Osbon Esteem off of eBay for $133. I can't wait for it to arrive.

Although I have been celibate for the last couple of years, my improved health and weight loss has stimulated female attraction towards me again an as such I acquired a female partner who is unusually understanding of my condition and very willing to help me recover. The fact that she works in the medical industry (She's a physical therapist) is very young, very attractive, and very affectionate is a major bonus. Now if I can just get some positive results from my Osbon Esteem and reverse this dreaded disease I will be ecstatic.

Any and all feedback is highly appreciated. Also, if there is anything I can do or any information I can provide to help our cause just let me know. Thanks for being here!
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whiterol

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Re: Newly diagnosed with Peyronies Disease
« Reply #1 on: August 05, 2013, 12:23:12 PM »

I am now reading "MUST read before you post - Information for new members". I apologize for not reading it before I posted my introduction.
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Jonbinspain

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Re: Newly diagnosed with Peyronies Disease
« Reply #2 on: August 05, 2013, 03:38:51 PM »

Self diagnosis is not enough, see a competent urologist ASAP. if you need to find one in your area, there is a list of ones that are thought to be competent in dealing with Peyronies on the site. You need to ask for a scan to discover the extent of the plaque, and whether there is any calcification.

My first advice, from what you have said is, get you blood sugar and your Testosterone levels checked.

When you see  a urologist, ask him to prescribe Pentox - you will find all the evidence you need to supply any doubting medic on this forum - evidence from studies done by the world's leading experts on this disease. Vit E won't do you much harm, but it won't help against Peyronies, either.

There is a wealth of information on this site - more than is possessed by the majority of Uro's. read all you can. Any more questions you may have, there's normally somebody here who can answer them.

You have found the right place. Keep your chin up, we are all in the same predicament here.
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whiterol

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Re: Newly diagnosed with Peyronies Disease
« Reply #3 on: August 05, 2013, 04:40:47 PM »

Thanks Jobinspain. I had come to that conclusion after reading the "Must Read" post. I am now looking for a doctor in my area. Thanks again!
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whiterol

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Re: Newly diagnosed with Peyronies Disease
« Reply #4 on: August 05, 2013, 05:00:43 PM »

Just contacted the only doctor listed in Georgia.  Since I don't have health insurance there is a $500 co-pay for a consultation.  Wow.  I will keep looking.
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Jonbinspain

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Re: Newly diagnosed with Peyronies Disease
« Reply #5 on: August 05, 2013, 05:23:20 PM »

Ah! Yes, the perennial problem with health insurance that you seem to suffer from there. I don't have that problem here, the health service is excellent, and free for us older folk. Having said that, the particular Urologist I was assigned was next to useless - surgery, surgery,  surgery was his only answer.  Therefore,  the advice on this forum has been invaluable to me.

I hope that somebody from the U.S.A. On the forum Can maybe suggest an alternative.
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inkhorn

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Re: Newly diagnosed with Peyronies Disease
« Reply #6 on: August 05, 2013, 09:51:45 PM »

Whiterol- As is stated  hear and elsewhere, we can't narrow down any definitive cause of this cussed disease. Lack of erections, can be a cause. After no natural erections for 3 years, I got peyronies, but who knows. The fact that you are getting a VED is good, use it. It should help both problems.As others have said, you need to see a Uro for this and your total package. The whole celibacy deal, lack of sex drive and general Erectile Dysfunction, says to me there is something going on. I was celibate for 2 years, a long time ago, for a religious rite, but frankly never lost the eye for a woman, erections or wet dreams, just had to suppress it. Maybe someone on the forum knows of a low cost provider in your zip code, that can help. In the meantime, continue as you are. Self educate,research and continue to ask on the forum. When you get the VED, order the cock rings from the home company and by all means make a move on this new lady in your life. Regards Inkhorn
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whiterol

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Re: Newly diagnosed with Peyronies Disease
« Reply #7 on: August 06, 2013, 05:02:19 PM »

Well it looks like I get nocturnal erections after all...or at least partial erections.  I was awaken in pain last night.  Is that what I have to look forward to when trying to have sex.  The one good thing I can think of is this may truly be a sign that I've caught it early. That the first time I felt that.

I've scheduled a visit with a plan old urologist who may or may not be familiar with Peyronies Disease in hopes of at least getting an ultrasound and a prescription for Pentox.  However, just in case I've already ordered some from riverpharmacy.  I have always been skeptical of foreign pharmacies but since so many other on this forum have had success with them I took the plunge. It was actually cheaper from them than from Walmart so...  I order some Cialis too.  Hey, it's worth the risk.

Anything else I should try to get out of my doctor's visit?
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whiterol

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Re: Newly diagnosed with Peyronies Disease
« Reply #8 on: August 08, 2013, 03:39:40 PM »

Well my urologist just called me and recommended that I save my money and postpone my appointment until Xiaflex comes out. He says that there is no known treatment that he could recommend for me until then and that an ultrasound provides no more information than a physical exam.

Good thing I went ahead and ordered Pentox from River pharmacy. I have also ordered all the recommended supplements and will start taking those as soon as they arrive. I'm also waiting on my VED device. Wish me luck! :)
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james1947

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Re: Newly diagnosed with Peyronies Disease
« Reply #9 on: August 08, 2013, 06:01:42 PM »

Wish you luck whiterol :)
Many of us had faced incompetent doctors :(

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

inkhorn

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Re: Newly diagnosed with Peyronies Disease
« Reply #10 on: August 08, 2013, 06:51:02 PM »

Whiterol- Ditto to what James said. The sign outside their office says "practicing medicine"!! Regards Inkhorn
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whiterol

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Re: Newly diagnosed with Peyronies Disease
« Reply #11 on: September 18, 2013, 07:34:58 AM »

Well things are not going well. My disease is progressing. I was optimistic at first because I had caught it early and the wasn't much curvature present at that time but now I have about a 45 degree upward hook and erections are very painful.  The disease continued to progress even while taking Pentox, all the recommended supplements, and using the VED device.  Not very encouraging.

So now I guess all I can hope for is spontaneous remission, some miracle drug, or a successful surgery. Or maybe the pain will subside enough to allow for sexual intercourse.  I hope others are having better results than I am.  Now I'm starting experience the psychological effects of this disease. This really seems like cruel and unusual punishment for something. I wonder what I did.

Good luck everyone.
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GS

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Re: Newly diagnosed with Peyronies Disease
« Reply #12 on: September 18, 2013, 09:30:22 AM »

I was a good 6 or 7 months into Peyronies Disease before my Dr. prescribed Pentox and often wondered if I would have had better results if I had gotten on it earlier.  Based on your results it probably would not have made any difference.

The good news is my curve eventually went from 45 to 35 or less and the pain associated with erections has stopped completely, so hopefully, you will experience to same results.

IMHO, Peyronies has a mind of it's own and when your doctor told you to wait for Xiaflex, he is probably right.  But, if I were you, I would continue with the supplements and the VED...it won't hurt and it may help.  At least that's been my experience.

Good luck.

GS
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NeoV

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Re: Newly diagnosed with Peyronies Disease
« Reply #13 on: September 18, 2013, 10:15:07 AM »

Focus on the best possible erections, though stimulation and delayed orgasm or through VED.
I would recommend you try manual stretching immediately, ie "traction" but just with your hands. It has helped me a lot, go from bent to almost normal for the rest of the day after a session. Be very careful with this of course if you do decide to try it.

You might want to lay off orgasm for a while if that reduces healthy blood flow to your penis. Each time I orgasm afterwards I'm bent, while sex or masturbation without ejaculations leaves me more or less fine. I don't understand it, whether it's that my peyronies is actually a deformity caused by urethral scarring and inflammation, or if peyronies has a link to pelvic floor issues. Either way, it's just the way mine is.

Try doing squats, or running, just get the blood flowing. I can see an immediate change in my penis after doing standing squats, though the effect is probably very minimal, it's important to stay active. I really wish you luck and I'm damn sorry to hear about your pain : (

Keep up all the treatments, stay positive and let's hope this improves.

-V

Litani

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Re: Newly diagnosed with Peyronies Disease
« Reply #14 on: September 18, 2013, 02:04:33 PM »

whiterol,

Over what period of time?  Pentox takes 3-9 months to start working.

As far as psychological affect, I wish I can say something positive since I suffer from it too.  I cannot take this out of my mind.  I also feel like someone is punishing me.
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Care enough to throw everything you got at this disease but do not care enough to ruin your Life!

rellisacct

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Re: Newly diagnosed with Peyronies Disease
« Reply #15 on: September 18, 2013, 02:33:59 PM »

Psychologically I don't know that there is really a lot that anybody can do. I've had this for 11 years now and still haven't figured out how to deal with this emotionally. Being the most bi-polar person on the planet really gets to you after a while. Somedays I feel that my Peyronies Disease will be defeated and some days I just wish that I wouldn't wake up. More and more recently it's the latter, which makes me feel like implant is my only option left.
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“Opportunities multiply as they are seized.”
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jackp

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Re: Newly diagnosed with Peyronies Disease
« Reply #16 on: September 18, 2013, 09:05:21 PM »

rellisacct

An implant will change your life. Once healed you will say to yourself I wish I had it done years ago.

The benefits are many. Including an erection as long as you and/or your wife want. Rock Hard! Feels natural. Like the 24 year old single young man in my blog he tells all the girls he is Bionic. That really gets there attention and want to try it. None of his girlfriends are unhappy with it. None have turned him down.

There is a lot of information in my blog. Any questions just send me a PM or email.

Jackp
http://jackp-penileimplant.blogspot.com

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inkhorn

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Re: Newly diagnosed with Peyronies Disease
« Reply #17 on: September 18, 2013, 09:30:10 PM »

Jackp, Gotta say every time  there is a thread about the implant I'm intrigued.After the prostatectomy (4 years ago) I've never had an erection without the VED. Then this came along.Hard to face another operation and the side effects. Also I need a ring to not leek during sex. It's a lot to tackle. I give you credit for going for it. Regards Inkhorn
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whiterol

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Re: Newly diagnosed with Peyronies Disease
« Reply #18 on: September 19, 2013, 04:35:47 PM »

After looking at some of the photos on the implant blog last night I proceeded to indulge in an extend VED session in hopes it would start to help. Well now I believe that was a big mistake. I ended up with an unnaturally swollen penis. It appears the blood seeped from the enter cambers into the outer flesh. Very unnatural looking. Puffy. I'm confused because it's not painful, just swollen.  I tried squeezing it hoping to force the excess blood back into my bloodstream and that seem to help a little.  Now the swelling just remains at the base of the head.

So I don't recommend extended VED sessions to anyone.  I'm sure it's been warned against somewhere on here anyway but I was desperate. This sucks!
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Old Man

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Re: Newly diagnosed with Peyronies Disease
« Reply #19 on: September 19, 2013, 05:50:52 PM »

whiterol:

Man, what a bummer for you! You have commited the unpardonable sin in VED usage! There is messages and threads all over the main forum VED board about not overpumping the vacuum pressure.

Never fear though, I am sure that you have not done any permanent damage to your penis. Just DO NOT do any VED exercises until the swelling goes down and your penis is back to normal again.
And, make sure that you use extreme caution in the future with the amount vacuum you pump when you start back on your exercises.

I will be glad to help you in any way with getting on the right track with your exercises. just let me know by posting on the main forum or sending me a private message (PM). Based on which VED that you have, there is a 26 week protocol on VED usage. One is for one cylinder VEDs and the other is for the three cylinders VEDs.

Old Man
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Age 90. Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995. Heart surgery 2004 with three bypasses/three stents. Three stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries in the last 10 years.

MattFoley

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Re: Newly diagnosed with Peyronies Disease
« Reply #20 on: September 21, 2013, 02:53:59 AM »

whiterol, it's not the length of the pumping session that would pose a problem but instead the pressure you use. We're all tempted to push our tolerance to the pressure as high as possible but our penis disagrees with our big head on this matter.

I've gone 45 minutes to an hour without a problem. Of course, I'll stop for a moment to insure that my penis has sufficient blood flow but I keep the pressure in kind of a medium range. My biggest problem is that as soon as I start watching porn to give myself a good erection boost, I want to masturbate. So my sessions are shorter than I would like.

On the bright side of all this, what other disease gives you the moral, ethical, and health justification to constantly massage and play with your penis?  ;)
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