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Author Topic: I have started my Peyronies journey... 1 month ago...  (Read 8318 times)

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BillyBob2

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I have started my Peyronies journey... 1 month ago...
« on: January 31, 2013, 07:01:16 PM »

I'm 61, from the deep south.  Work hard and enjoy a lot of outdoor activities.  I'm self-employed doing basically handyman work.
Just before Christmas I noticed an indentation at the base of my penis and that when I pulled back the fatty area of the pubis that there is a definite curvature to the right near the base my penis.  Like others, I went to my doctor who knew virtually nothing and actually asked me what is done for Peyronies.  He did give me a prescription for a broad spectrum antibiotic which might have helped with the little bit of urethritis I was experiencing.  I also picked up some Azo to relieve the irritation.  No problem with discomfort since then other than an occasional pain that I'd describe as a mild throb in my scrotum that goes all the way up to the base of my penis.  At this point I had not detected a lump.  It was a few days later when I spent the weekend with my girlfriend that I found a lump near the base of my penis.  The size and shape seems to change quite a bit but it feels like it is maybe a blood vessel or something, maybe two that join in some way.  It is very difficult to describe.  It doesn't feel like it is attached to anything when flacid but is a very irregular shape about nickle size.  Along the dorsal edge it appears to be almost  rock hard and a couple of millimeters (less than 1/8") thick.  If I squeeze and massage the lump it kind of goes away leaving only this somewhat rock hard rod shape roughly 3/4" long.   
    I've been on other forums and did a lot of reading.  At my request my doctor ran blood tests on me and found that my bad cholesterol level is up as well as triglycerides.  He advised me to take a niacin supplement.  Another doctor who is one of my customers recommended vitamin E.  I've put together quite a few supplements after reading how this or that works and some claiming they were cured or saw major improvement.  My blood pressure has been up to pre-hypertention levels so I also took that into my self-prescribed natural supplement regimen.  For many years I've eaten a very big traditional breakfast (bacon, eggs, biscuits or pancakes) and usually a healthy supper.  I do not drink carbonated beverages and rarely drink alcohol though I am addicted to coffee and will have at least one glass of milk with my breakfast. 
    Here's the list of supplements I'm taking.  MSM, Vitamin E, Niacin, PABA, Nattokinase, aspirin, Red Yeast Rice.  I now only have oatmeal with blue berries or other fruit for breakfast and avoid beef... mainly eating chicken or fish but do cheat once a week.  Only out of necessity will I eat at a restaurant occasionally.. maybe twice a month.
It has been a month and I've not seen a change in my condition.  If anything, the peyronies may be spreading a little, my blood pressure seems to have gone down from 149/89 to maybe 130/82 (I have a home blood pressure monitor).  I don't even know when I should go back to a doctor for checking cholesterol/blood labs.... I assume 6 months check up would be appropriate.
   I suppose the only question I have is whether or not anyone has tried or had any success with the natural supplements?  Virtually all the success stories I've read sound more like somebody hawking their own product rather than honest reports.  As for me and the possibility of surgery... I can't afford it and it is definitely something I would only do as a last resort.
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MattFoley

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #1 on: January 31, 2013, 08:49:53 PM »

BillyBob2007,

Welcome to the forums.

You'll find a vast resource of information here. It may seem overwhelming at first but as you sift through it, you'll find a great deal of info that applies to your situation and the possible solutions which may very well impact your Peyronie's disorder in a positive manner.

The first thing I would recommend is to go see a Peyronie's oriented urologist since only a few urologists know anything about this issue.

Second, Pentox is the first-line medication that the vast majority of us here use to fight back against Peyronie's. You need to consider getting on it right away.

Third, get a full panel blood test done that checks not just your lipids but your testosterone level as well. My emphasis since I started my counter-attack against Peyronie's has been to raise and maintain a high testosterone level.

This forum is a great place for info and the other guys here are awesome and will help you as well. Feel free to ask as many questions as you need.

God bless.
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Jonbinspain

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #2 on: February 01, 2013, 01:54:52 AM »

Welcome. Firstly, nobody on this forum is trying to sell anything - if anybody tries, they get barred pretty quickly. We are all in the same boat as you. We are here trying to exchange information and to help and support each other.

I can't tell you that there's a proven cure for Peyronie's - there isn't. However, that doesn't mean it's impossible to get rid of, or to manage.

Read all you can on this forum. There's a lot of useful information on what has been shown by many to be effective. As Matt says, first line of attack is Pentox ( Trental)  also consider L- Argininine, Acetyl l Carnitine. Maintaining good blood flow to the penis is essential.

Any questions, don't be afraid to ask. The guys on here are pretty knowledgeable.
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #3 on: February 03, 2013, 02:02:38 AM »

Thanks guys.  I've read so much that at this point it all is getting foggy and confusing.  I'm dealing with two things at once and I think they are related in some way.  Blood pressure was up to pre hypertension level, bad cholesterol and triglycerides up just above recommended levels.  My doctor simply told me to take niacin.  If my home bp monitor is correct I'm doing great with lowering my bp to the neighborhood of 120/80.  It ranges in the upper 120's/80-85 most of the time.  This is down from 149/89.  I'm going to give it a couple more weeks to see how things go before I ask my doctor to give me a script for any medications.  I've been totally loyal to my live in girlfriend since we've been together for the past 3 years.  From everything I've read it appears that frequent sex in a non aggressive manner is recommended to keep the blood flowing.  If this is so then I've got a problem that I'll have to make choices of how to deal with.  Girlfriend has been staying out of town with her ailing mother waiting on her to pass.  She could be there for months or even years... We pretty much see each other only on weekends and one round of sex is all she seems up to each weekend.. ... so, if the sex thing is what I need for my health then I'll be looking for a surrogate and hoping not to destroy our relationship.
     Today I picked up a couple of bottles of CoQ10 since that is one thing on the list of herbals that I have not been taking.  One of my customers is a D.O. (doctor of osteopathy).  He doesn't know any more than other doctors about Peyronie's.  However, when I sent him copies of Matt's post he mentioned cialis and trajenta... and a daily "workout".   For one thing, I don't have any significant trouble getting an erection tho' it's not quite like the days of yore when I was young and full of hormones... frankly, I'm relieved that I don't walk around with a perpetual hard on and sniffing every woman with pouty lips and protruding breasts. 
    Today has been a big annoying as the plaque seems to have grown though the small area that is almost rock hard doesn't seem to have changed any.  However, there is another pea size area on the opposite side of my penis that when squeezed just a little does emit a bit more significant pain.  This really concerns me since it tells me the problem is spreading.  As for masturbation... I'd rather not since I kind of fear that could be too aggressive and irritate... kind of feel like it's a damned if I do and damned if I don't situation.  Damned if this isn't getting to seem like some kind of freak nightmare / soap-opera. 
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egghead

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #4 on: February 03, 2013, 07:36:44 AM »

My theory is that if you think it's spreading, that means you are injuring yourself in other places. In my opinion, your once a week sex is perfect. Nighttime erections will take cafe of the blood flow needed.
I would focus on getting your testosterone up naturally first if you can. Lower any inflammatory foods/drinks as well. I have a personal list of do's and don'ts but don't want to confuse anybody more anymore than I already am.. I'm about 9 months into this third round of a 10 year ordeal.

My issues were high blood pressure, stress, insomnia, inflamation, alcohol, and low T. Without those risk factors, I feel that I could have been disease free. Common health knowledge stuff. Now I've got to make some major changes and hope for a miracle. Miracles happen all the time.
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #5 on: February 03, 2013, 02:19:54 PM »

Thanks for the post Egghead.  So far, with this condition it seems that nothing is conclusive.  I read a lot during the wee hours of the night on hyperthermic treatment which at first seemed very promising and made a great deal of sense.  After many posts the participants seemed to lose hope.  Of course, every one of us will try anything we think may help and some will go to great lengths even if it may cause self-injury.  The injury would not concern me if I knew success and healing would follow.  That is what surgeons aim for.  Myself, I'll be looking for proven methods before I try anything that appears to be extreme.  I'm quite sure I'll be looking into some sort of heat therapy. 
   At the moment I'm feeling that I may be having failure and success at the same time.  What has been a rock hard place, much like a vein which feels calcified, is beginning to feel as though it may have softened up some and is flexible.  On the other hand, when I do have an erection there is an area at the very base of my penis extended backwards through the bone of the pubis which feels swollen and a bit of a throbbing pain but only at a level that I know it's there and annoying, not what I'd call hurting pain and by no means debilitating. (Is there such a thing as a pain scale?)  I'd really like to be able to assign a value or number to pain according to it's description.  I do have some concern over this swelling.  I do know that swelling and edema is a physiological response of the body trying to heal itself...so, I'm praying this is what's going on.  So far I have not noticed any unusual redness.  I have been taking hot showers and massaging the plaque, perhaps squeezing it too hard at times attempting to break up plaque.  I'm trying to be very careful as injury to the area may be what caused the plaque formation in the first place.  There has to be some logic and meeting ground in this some where.  I have not taken measurements of length or of the angle of deformity.  The combination of this ailment plus girlfriend having her own stresses and issues to deal with very much leaves me alone to deal with this.   She got home much later than expected this weekend and left much earlier this morning than expected.  Though I tried to spend as much time with her as possible and be supportive of her she didn't seem to appreciate my presence at all.  It has been this way for quite a while and much of it I blame on her getting on government assistance then getting her divorce settlement.  With the government assistance came medicare and prescriptions for heart medications including an anti-depressant.  Since she started the meds she has seemed to lose interest in sex and no longer works with me.  She chooses to sit around the house and do very little.  Once she got her own money she seems not to have much appreciation for me with her new financial independence.  With her mom going downhill and needing 24 hour care it is definitely stressful as she is the primary caretaker though her brother helps out since they are at his house and he has a full time job.  If things get any worse between us our relationship could be over at any time.  I've never had good luck with relationships with it being rare that one lasts more than 2-3 years.
     
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guyincog

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #6 on: February 03, 2013, 05:12:16 PM »

Hi Billy,

Sorry to hear about what you're going through.  We have all been there, some to less degrees than others.

With respect to your relationship I would like to give you the advice to try to stay positive and try to read up on general relationship advice/counselling.  I don't know how close you two are or how supportive she has been (doesn't sound like it's very encouraging) but in this disease communication and trying to tackle it as a couple can be helpful.  I can only speak from my own experience but I shut my gf out of what I was dealing with.  I wanted to try and solve things on my own and deal with things on my own.  I went to doctors appointments without her, I didn't talk with her about how it made me feel as much, and in general issues we were having in the relationship I didn't open up as I feared showing insecurity or talking about problems might drive her away - especially tough given what I was going through and how much I needed her unconditional support.

This problem can add stress to an already stressful relationship and it's easy to feel down and depressed about it.  If you think it would be helpful, and if she's willing, perhaps you can try and start seeing a therapist/social worker/Councillor together to try and work on the problems together and hopefully make it easier for the two of you to deal with all issues you may have in the relationship.  Again, it's hard to suggest this as maybe she just isn't as open to it as others may have been.

In general, if there are ways for you two to increase your 'intimacy' maybe that's the route to go. 

Just know that you're not the only person who has dealt with these kinds of things.  I am not the best person to give relationship advice but maybe there are some others on the forum who can pitch in and offer suggestions, if it's wanted. 

If she's not able to provide the support/intimacy you need then it's not your fault.  It sounds like you are trying your best.  That's really all you can do.  Things have a way of working themselves out.

I'd also like to mention that if you are feeling down and depressed about the medical stuff it could be affecting your judgement in general.  Again, just in my case, I because quite depressed in general and was not able to see the good parts of my relationship as clearly as I could see the bad parts.  I let myself become a lot more despondent about things and possibly projected my sadness about one part of my life onto other parts.  Might be something to think about and focus on - the positives in your life, albeit as small in comparison to the negatives. 

All my best.  I hope any of the was in some way helpful.
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #7 on: February 04, 2013, 12:21:26 AM »

I appreciate all the words.  As for going to a doctor for anything it's pretty tough even with insurance.  Work has been very slow and I can hardly afford a co-payment much less a bunch of tests and specialists.  When I did go to the doctor he simply agreed with my own diagnosis since he didn't know diddly about Peyronie's.  From everything I've read it is about useless to go to a doctor anyway with this condition as long as it is manageable with OTC meds and supplements.  As for my relationship, it has not been doing well for several months.  She has a heart condition and as with  many other people, she rejects the idea that the Lexapro has had an effect on her libido or mood.  I can assure you that it has and I have 2 ex's that the same thing happened when they were put on heart meds that are also anti-depressants.  Simply put, they get lazy, put on weight, and lose interest in intimacy as well as get irritable tho' they don't feel it... I sure did! 
    For now, I know she is dealing with taking care of her mom and I have little doubt that part of her being so willing to run up there to do it was to get away from here for a while.  Up there she has no responsibilities and can sit around crocheting all day while watching t.v. and helping her mom in and out of bed and the bathroom.  I have no problem with her helping her mom and being with her.  But, it does add stress to our relationship and another factor in me dealing with my peyronie's condition.   She left here today for the 4 hour drive back to be with her mom and we had words and ill feelings when she left... and I have not heard from her since.  I'm just too stressed with other things to worry or deal with it.  If we work it out, fine.  If not then life will go on and I'll just deal with whatever comes up next.
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funnyfarm

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #8 on: February 04, 2013, 01:06:48 AM »

Billybob, with all respect your strategy of taking OTC drugs and supplements has a low probability of success.  Please read Matt's post below over again.  I also strongly urge you to see a peyronies specialist and get an RX for pentox, the sooner the better.

Also, you do not need to frequently have sex, it is unlikely to help much if any.   So I would not get stressed out about that.
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #9 on: February 04, 2013, 01:21:45 AM »

Thanks funnyfarm.  That's exactly what I'm here for.. to get advice and find out what does and does not work.  Quite frankly, I'm not even sure this is the same as Peyronies Disease except that it has the same symptoms of a lump and curvature.  One of my problems with a decision concerning going to a GP or uro is finding one who is familiar with this disorder.  I certainly just as soon treat myself as to have someone not knowing what's going on to be performing quackery on me.   I'll start another thread to further discuss and describe the physical nature of my abnormality.
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funnyfarm

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #10 on: February 04, 2013, 01:27:20 AM »

Good idea, and I agree there is no point in seeing a doctor that is not up to speed with Peyronies Disease.

The supplements likely will not hurt, but honestly pentox has delivered the best results for other members here.  Keep in mind though, it takes a long time, and does not work for everyone.

We are here to support you.
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MattFoley

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #11 on: February 04, 2013, 02:03:21 AM »

BillyBob2:

I agree with funnyfarm. Supplements can be useful, but Pentox is a must. And, yes, it takes time so you have to stick with it.

Depending on your budget, there are quite a few other things you can do as well to help your chances of getting better. As egghead mentioned, it's a great idea to get your testosterone up naturally and there any number of techniques you can use in order to achieve higher testosterone levels.

Just let us know how you wish to proceed and everyone here will do the best they can to help.
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #12 on: February 04, 2013, 02:13:14 AM »

Believe it or not, I do have quite a bit of education in medicine as a microbiologist so I readily understand a large amount of the medical material.. although, it has been 35 years since I graduated from college and have had little work experience in the field.  (I actually ended up being a plumber/handyman and am somewhat semi-retired living on a meager income).   Since my symptoms have a lot of similarity to Matt's I posted in his thread     My Peyronie's - Dorsal Vein & Artery.    When I did go to the doctor I asked him to run blood labs and some of it I can decipher but there are like 3 pages of report and I don't know what much of it is.  With my insurance pricing it was relatively inexpensive.  As for getting my testosterone levels up the only thing I've heard that will help on that is exercise and/or sex.  From what I can tell of my readings testosterone is a good thing and it is unlikely that I could get too much of it.  But, YES, I'd definitely like to know more about how to raise my testosterone level.
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MattFoley

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #13 on: February 04, 2013, 02:19:35 AM »

BillyBob2, I responded to you in the other thread as well. Do you happen to know what your testosterone levels are? If you do, you can post them or PM them to me. If you can post or PM your age as well, it would really help.

Since it's late right now, tomorrow I'll post the info on how to raise your testosterone. It includes diet, exercise, and if need be, replacement therapy as well.
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #14 on: February 04, 2013, 02:22:27 AM »

I'll be 61 in 3 weeks... I'll look over the blood labs and see if anything appears to be a testosterone level ... lots of things on there are not recognizable to me.
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MattFoley

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #15 on: February 04, 2013, 02:34:15 AM »

OK.

Also, instead of CoQ10, you need to get Ubiquinol when you run out. Ubiquinol is a more effective form of CoQ10.

Some of the other guys might get you started on ideas before I post again but I'll be back tomorrow to give you a whole list of stuff.



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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #16 on: February 04, 2013, 02:44:02 AM »

Nope... nothing on my blood labs suggesting a testosterone or androgen level report.  However, I have no problem getting an erection though admittedly it's not like when I was 18 years old... a little bit slower and sometimes nice to have a little help from the girlfriend but no significant problem... and when I sweat I smell like an old carpenter.
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egghead

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #17 on: February 04, 2013, 06:21:36 AM »

I am trying the pentox (3x400mg a day) as well. It is cheap. I think the longer you wait, the more likely the plaques could calcify. I can see that you're being cautious. The good thing about a high testosterone diet is that it makes you feel great all around and promotes healing down there. If yours is normal, I'd focus on getting it high. How were your estrogen levels? You might also want to focus on lowering inflammatory foods and get lots of sleep.
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ashtown

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #18 on: February 04, 2013, 05:23:21 PM »

The good thing about a high testosterone diet is that it makes you feel great all around and promotes healing down there.


Just on the general topic of testosterone since it's being mentioned here I just found this article online that may be of interest BBC News - Testosterone: Can it make you live longer?
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MattFoley

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #19 on: February 04, 2013, 06:00:06 PM »

ashtown, awesome article. Thanks for posting it.

The doctor mentioned in this article is someone who inspired me a while ago to get my butt in gear and change my life. I hope he continues to inspire others as well.
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #20 on: February 04, 2013, 10:48:01 PM »

I'll be trying Pentox real soon.  Not sure if my doc will call in a script for me or if I'll have to make an appointment which I probably need to do anyway for testosterone labs.  Might be a good idea to have an enzyme panel run too and just do a check up on my lipids to see if my diet is doing any good.  I've checked my bp several times today and it has been elevated every time.... I guess girlfriend being in a bad mood is driving it up along with my frustration and pissed off level.
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Hawk

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #21 on: February 05, 2013, 09:22:33 AM »

My theory is that if you think it's spreading, that means you are injuring yourself in other places.
A beg you not to be offended but I want to speak plainly.  I truly do not mean this disrespectfully but this quote shows a complete misunderstanding of the very basic nature of Peyronies Disease.  Peyronies Disease is hypertropic scaring where something triggers the body that it either had an injury or it thinks it had an injury and it starts laying down scar tissue.  If it formed scar tissue at the site of an injury it would NOT be Peyronies Disease.  It would be a healthy body response to injury.  With Peyronies Disease, once that process starts, scar tissue can over-run healthy tissue far far from any injury.  Please look at this on keloids to understand this concept a little better.  This man had a couple infected hair follicles in the center of his chest.  The scarring spread 10 inches from that point over the following 14 years.  Can you imagine someone telling this man "you must be injuring yourself"?

Our quest is to turn off the process raging out of control, to restore the integrity of our natural scar forming process in our penis, and to try to reduce the scarring or at least stretch the scarred tissue.

http://www.peyroniesforum.net/index.php?action=dlattach;topic=155.0;attach=51

I really recommend that members go to our Resource Library board an read what is there.  If you then want to postulate your personal theories based on evidence and fact that is fine.  We must remember that we must however seek to absorb information before presenting personal theories to a problem that has eluded great minds for centuries.  When we dispense misinformation even with he best intent, it sets back our mission.
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egghead

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #22 on: February 05, 2013, 09:42:11 AM »

No offence taken Hawk. It is my theory is that if you get a plaque during a time when your body is weak (low T for example), it is easy to trigger another plaque by injuring yourself. That's just been my experience..
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #23 on: February 05, 2013, 07:10:41 PM »

I'm quite sure there are about as many theories as there are cases of Peyronies Disease.  What appears to have happened to me is that some way there has been a blockage in an artery or vein.  This blockage allows some flow to get by but more solid or highly viscous material collects behind the blockage.  The backed up blood seeks another path and will inflate other vessels when erection occurs and the pressure pushes the blood.  The reason for my conclusion is that when I have been flaccid for several hours the size of the hardened area is much smaller and very soft/pliable.  After an erection it remains a bit bigger for a while.  As for any kind of surgery or procedure it seems logical that some device could be inserted in the vessel to scrape the inside of it and remove the blockage.  However, I would hypothesize the possibility that this could result in more scar tissue formation as any injury could stimulate this kind of repair response.  What I'm seeing in my mind is a type of procedure as done to open arteries & veins to the heart.  With the elevated cholesterol level I have had I am somewhat equating this Peyronies Disease problem to atherosclerosis/arteriosclerosis.   However, the expansion into neighboring branch vessels is simply due to elevated pressures in the area and I see the possibility of  leakage or a similar type of blood vessel rupture, maybe even the growth of new branching vessels.  As for the how these vessels function in bringing an erection then releasing the blood I simply do not know what kind of valve or restriction is taking place to maintain or release an erection nor what chemistry is involved in this process.
  UpDATE.. hopefully I'm making some progress.  Not sure which supplement is doing it but one of those is making me a bit nauseated.  Over the weekend I started CoQ10 and Norwegian cod liver oil.   On the plus side, I had sex with girlfriend Friday night.  Sunday I had a lot of discomfort and low grade pain in my groin on both sides extending down into scrotum/testicles.   There was observable oval shaped swelling on the right side of my penis just under the pubic bone. I can still feel a bit of this pain in my groin but not as pronounced going into testicles.  I can pretty much describe this as "blue balls" which is about what it feels like.  Over the weekend I also developed a b.b. size nodule deeper in my penis under the pubic bone, possibly on, in, or very near the urethra.  Today, while massaging the fibrous mass it feels that it has become much softer and more pliable without the rock hard rod feel that it has had the past couple of weeks.  The affected area does seem to be a little larger but there it is less defined.  Hopefully, at last I am making some progress with treatment.  I feel that aggressive firm massage of the lump tends to cause more swelling and/or hardening of the area.  IMO, getting an erection or a "semi" is beneficial.  I also think regular, mild sex would quite possibly be therapeutic.  However, prolonged sex or aggressive masturbation may cause more distention of the area and result in pain until the physiological response subsides.  At least, for me, this has been my experience over the past 4 days.  Some times I can feel changes within an hour and some changes I notice over a period of days.  Though the plaque like formation is still there and larger at the moment it is not rock hard but pliable so I am praying this is a huge success and turn for the better.
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Hawk

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #24 on: February 05, 2013, 08:36:18 PM »

BillyBob,

Did you get your explanation and solution from a Peyronies specialist, a Sexual Dysfunction Specialist, a renown penile surgeon, or just a run of the mill urologist. 

Or, is this just your guess about how the penis functions, of what could be happening, and your guess at a procedure that might exist to correct it?  I have spent 3,000 hours on this forum over the last seven years.  I have read books on Peyronies Disease, talked to some of the most renown doctors in the Peyronies Disease community, I spent a lot of time on other forums when they existed, and I have spent countless other hours searching for real facts on Peyronies.   I have to tell you I have never heard an explanation of either a condition or a procedure like you describe.  Peyronies has nothing to do with blockages in arteries. Also blood does not inflate vessels in the penis.  It inflates chambers.  We have diagrams on basic penis anatomy in our Resource library.  Have you checked that area out?

I am curious where you got such a detailed diagnoses and information on that corrective procedure.
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #25 on: February 05, 2013, 08:48:42 PM »

Hawk,
in my posts I have only mentioned that I have been to a GP.  The chambers you speak of I can only relate to as a type of blood vessel.   I have absolutely no doubt as to the volume and quality of your knowledge and experience.  ALWAYS feel free to correct or append anything I say.  As for my qualifications... ZERO... just another sore pecker with a knot & indention.  As stated, my post was/is hypothetical... always looking for explanations/answers the same as everyone else... and expressing my train of thought.

BTW... I have edited to include today's progress/events in my previous post.
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Re: I have started my Peyronies journey... 1 month ago...
« Reply #26 on: February 05, 2013, 09:18:09 PM »

BillyBob,

Do yourself a big favor and spend some time reading the great resources here rather than theorizing about what you as an uninformed lay person might imagine.  It really does not help you in the long marathon ahead.  You need to prepare yourself to understand this process, your penis, the pros and cons of possible treatments, and how to communicate intelligently with a doctor about these issues.  As you get specific questions about what you study ask those questions.

If you spend your time just BSing about what you imagine and reading responses from others that know no more than you, you will lose a lot of precious time.  Read the Resource Library and the highlights at the top of every board.  Then this forum will have helped you.

Regards

Hawk
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #27 on: February 05, 2013, 09:34:51 PM »

Hawk,
let me add that there appears to be some argument in the definition of Peyronie's disease.  In the most basic definition it is any mass inside the anatomy of the penis which results in penis curvature.  Other definitions appear to me to be more specific requiring a calcification or at a minimum a fibroid mass in tissues. 
     In my case, what I THINK that I am dealing with is a blood circulation anomaly which may or may not have a fibroid component.  For all I know it may just be swelling or some other arterial blockage at this stage.  The reason I draw the conclusion that it is arterial in nature is that when I have an erection and there is an enlargement of the affected area it extends back toward the pubic area and is dorsal though a bit to the right side of my penis.  It appears that the area of this lump very well may be a location of an injury which simply may be healing as is my hope and prayer.  For whatever reason the chambers in about a 1" area of the right side of my penis are affected (blocked) and do not inflate during an erection.
    As for reading and studying.. that's all I've done for the past MONTH.  I am not here to argue nor do I take your advice lightly.  It is very much appreciated.  I have in fact read and studied the anatomy, pics, etc.  However, I do have a bit of a hard time retaining information with learning so much at one time.  I'm also taking notes of meds, medical procedures, pros/cons, etc. to discuss with a qualified urologist. 
    Please understand that I do not have a regular full time job but work sporadically on small construction or repair jobs.  If all goes well I will clear $2,000 this week... after having almost ZERO income for the past two months over the holidays and off season.  Most of our work is on vacation homes and plumbing repairs wherever they are available.  As with many people in the construction industry it's always feast or famine for us... lately it has been famine and I am deeply in debt on my credit card.  With a little luck I could possibly pay this off in 4 months... if I just get it lowered about $4k then I can afford to be more liberal with medical doctors though I am skeptically cautious.  Constructive criticism will always be appreciated.
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Re: I have started my Peyronies journey... 1 month ago...
« Reply #28 on: February 05, 2013, 09:42:23 PM »

Step one is get a diagnosis from a urologist or sexual dysfunction doctor that specializes in Peyronies Disease.  Until step one, step 2 is impossible and you cannot get step one on a forum.
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LWillisjr

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #29 on: February 05, 2013, 10:44:17 PM »

Assuming it is arterial in nature, then it has nothing to do with Peyronies Disease. There are other reasons for lumps and bumps in ones penis. I understand your situation and that seeing a doctor isn't currently feasible. But eventually you will need a professional diagnosis to understand what you are dealing with. Until you have a proper diagnosis, you could be pursuing the wrong type of treatments.
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Hawk

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #30 on: February 06, 2013, 07:45:30 AM »

Also, if money is tight, my advice is don't spend another dime on Nattokinase.  It costs more than almost any other supplement and it has yet to be confirmed that it does anything by anyone that takes it.

Until you get to a doctor all you can do is eat healthy, don't smoke ,get a good 8 hours sleep, take a few supplements, maybe soak in a hot bath daily, and take ibuprophen if you have pain.  Those things will support your body dealing with whatever you got.
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #31 on: February 09, 2013, 10:08:44 PM »

I had Friday off due to weather so went ahead and bit the bullet.  I was able to get an appointment at Urology Centers of Alabama in Birmingham.  I got to see Dr. Moody who is primarily into prostate cancer.  He called in an Erectile Dysfunction nurse (I assume she is a nurse) who didn't do anything special other than to confirm his finding.  I asked about all the supplements I am taking and she told me Vitamin E is all that I need and the other stuff wouldn't have any effect.  In the end I was prescribed VUE cream and told to get a cheap bottle of L-arginine x 3/day.   I complained of pain and discomfort and got a script for metylprednisolone(sp?).  When I asked about Pentox Dr. Moody was totally without a clue and totally off guard.  They let me get on their computer to give more info and he said he would give me a script for it if I wanted it but he didn't know what it would do... pretty much I told them they need to start reading peyronie's disease society's forum... all their research and I'd swear that I know more than they do about Peyronies Disease... and I'm just beginning to learn all that has been tried.  However, they do know a lot and are a major research clinic.  I had hoped to get to see Chris Spivey but she is seen only by referrals and I was told that she will be retiring next month... So, I ended up with 4 things... vue Cream (a compounded formula of Verapamil, MePred. for inflammation/pain, Pentox, and L-arginine.  At Walmart the Verapamil & Methylpred cost about $25 each.  My insurance does not cover prescription drugs.  I was also told to take tylenol for inflamation / swelling.  I have an appointment to return in 6 weeks for progress check up and was told what to expect as the disease progresses if it does not correct or subside soon....  I was never told a thing that I haven't already read on this forum.  So, there were no surprises and nothing to get excited about.  My biggest accomplishments were to get a script for Pentox and to confirm my self-diagnosis.
    As for my suspicion that the lump was possibly in or around a vein or artery it's more like the lump wraps around vessel(s).    Methylprednisolone is a cortico-steroid which has many possible side effects including suppressing immunity and weight gain. 
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Re: I have started my Peyronies journey... 1 month ago...
« Reply #32 on: February 09, 2013, 10:36:23 PM »

Billybob, glad to hear your doctor was willing to listen and help even if he is not the most experienced.  One thing I would  caution you about though,  if you take all those things at once, it will be very difficult to tell what is helping and what is making things worse.  I would be especially uneasy about taking the methylprednisolone right away.  It may help with pain but will not improve the peyronies and could have some nasty long  term side effects if taken too long.   I would try the pentox without hesitation,  it very well may help with pain and Peyronies Disease.  You did the right thing by being persistent and making sure you got the script.  Like many of us here,   your time and research here are starting to pay off.  Good Luck !
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MattFoley

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #33 on: February 09, 2013, 10:41:01 PM »

I asked about all the supplements I am taking and she told me Vitamin E is all that I need and the other stuff wouldn't have any effect. ...When I asked about Pentox Dr. Moody was totally without a clue and totally off guard.  They let me get on their computer to give more info and he said he would give me a script for it if I wanted it but he didn't know what it would do...

The rules of this forum prohibit me from using the kind of profanity that Dr. Moody and his "nurse" deserve, so I'll just be polite and support what you already know, and that is, they neither of them know much about Peyronie's.

Just like funnyfarm said, you did the right thing in requesting Pentox and telling them where they could find more info about a disorder that they themselves are supposed to be able to appropriately diagnose and treat.

I'm guessing that they prescribed Pentox 400 mg/3 times/daily. After you have shown tolerance to the Pentox without any side effects that would cause you to disengage the medicine, have the doctor up it to 800 mg/3 times/daily. That's what the doctor did for me.

Yes, the L-Arginine is a good idea, even though I use Citrulline Malate instead because I find it to be more effective but the other guys here use Arginine and are happy with the results.

The Methylpred is a short-term drug used for inflammation. It's like a super-Ibuprofen. That's fine if you can tolerate it as well but like funnyfarm said, it's not for long-term usage.

The topical Verapamil is not something that has a great deal of support here but I don't think it can hurt. One of the other guys could probably go into that a bit more.

Lastly, if you're not getting good, regular erections, please consider getting on 5 mg/day of Cialis. Blood flow is important.

Hey, it's a great start. But, you should definitely look into finding a Peyronie's urologist who can help guide you through the process better.

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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #34 on: February 09, 2013, 11:07:03 PM »

Thanks ff... the way I see it it's my body and my money and I have ZERO problem telling a doctor or nurse they're wrong or what I think when it comes to medicine.  I'm also always willing to listen and ready to admit when I don't know and when I'm wrong.  So far I feel fortunate to have a GP that was willing to listen as well as a uro.    I do agree that with the long list of supplements I'm taking that I do need to cut out all that I can.  I've been treating elevated cholesterol & triglycerides, elevated blood pressure (not "high" but above desirable levels).  I intend to research them before doing the prednisolone.  It has an unusual schedule of like 6 pills the first day then tapering off over a 6 day period.  I am glad the Pentox lowers bp since that is one of my goals... I just need to eat foods that will maintain a lower bp as well and lower cholesterol.  After 6 weeks on the program I've designed for myself my bp has dropped to the point that rather than over 145/87 it rarely runs more than 130/82.  Last night after a day of rest it was down to 121/75 which is something I have not seen in at least 15 years...  I'm hoping to establish a diet & regimen to stabilize at 120/80 or below at rest such that I can stop all supplements.  For some reason I highly suspect the elevated bp and LDL are related to my progression of Peyronies Disease.
  Another note:  daily massaging of the lump seems to have resulted in it softening, no feeling of a rock hard area, somewhat flexible where it was absolutely solid.
...
Matt... your post came through while I was typing.  One thing I found really GOOD about the urology clinic is that they were very open and listened to what I had to say though I kind of felt like Dr. Moody walked out while I was talking to him.  His nurses were very receptive to what I had to say.  Actually I had gone to check out when I remembered the pentox then went back and found Dr. Moody in the hall.  At that point he began to listen to what I was saying and why.  When I told them the theory is that of keeping blood flow and oxygenation happening he said something to the effect that "that has nothing to do with it since it is in the tissue, not in circulatory system".   IMO.. b.s.... oxygen is throughout the body and needs to be available for oxidation, electron transfer, and many enzyme & synthesis reactions to take place not to mention osmosis across membranes.   Myself, I am very interested in Peyronies Disease on a chemical and synthesis level but it has been so long since my physiology course (a very very serious one) that it is really tough to recall all the processes.  I had many classes that were required for pharmacy students and pre-med students.  So, I can dig in pretty deep on this stuff.
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MattFoley

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #35 on: February 09, 2013, 11:19:20 PM »

The good thing is that they are willing to listen. But thank God you did your homework and went into the appointment prepared. I can only imagine how many other guys went into their office unprepared and ended up with bad advice. That's what angers me.

I'm glad you got the Pentox and the other stuff should help as well.

Also, was there any discussion about getting a full blood panel done? It would be good to know where you're at health-wise.

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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #36 on: February 09, 2013, 11:27:00 PM »


Also, was there any discussion about getting a full blood panel done? It would be good to know where you're at health-wise.
Surely you jest!!!!  I gave them a copy of the blood labs from my gp.  Unfortunately I have CRS (can't remember squat!)... I had intended to get checked for testosterone level and c-reactive protein.  If my insurance will cover it I may go to my gp and request those and all the other tests I haven't already had done that's on your recommended list.  Many of the things on the report I have I'm simply not familiar with or at least don't know what all them letter stand for....
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Re: I have started my Peyronies journey... 1 month ago...
« Reply #37 on: February 09, 2013, 11:34:25 PM »

Don't stress. I know what that stuff means and we can go over it together if you like. :)

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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #38 on: February 09, 2013, 11:39:59 PM »

thanks... I'd dig it out and message it to you later.
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Re: I have started my Peyronies journey... 1 month ago...
« Reply #39 on: February 10, 2013, 04:14:22 AM »

Hi BillyBob2,
Just wanted to let you know my experience with Prednisone....
I had pneumonia in 2010 and was on prednisone for nearly 4 months. I put on 22lbs and felt dreadful the whole time. It must be a gradual reduction when getting off it, as  it can't be suddenly stopped, more af a weaning.

At that time I had never had Peyronies nor Erectile Dysfunction, but very soon after I recovered from the phneumonia and soon after I stopped Prednisone, I started both, with painful erections the first sign.  I have asked if there could be any connection and it has been denied, though with their limited knowledge of Peyronies, I don't see how they could be definite.  Be very wary of Prednisone.

Best wishes, Blacksammi
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Re: I have started my Peyronies journey... 1 month ago...
« Reply #40 on: February 10, 2013, 02:36:49 PM »

Blacksammi... your experience sounds very logical.  Steroids act on enzymes and from what I gather it seems that a clue to Peyronies Disease is fibrinogen or thrombin or some other protein which results in these "lumps".   I'll be researching as to exactly what these lumps are comprised of, what initiates the nodules forming in the penis, and what could possibly dissolve them.   If we can ever find something to manipulate our body chemistry so the body will dissolve and wash them away on its own that would most definitely save us from torturing ourselves with medieval devices trying to get the perfect straight pecker we once knew...
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Re: I have started my Peyronies journey... 1 month ago...
« Reply #41 on: February 10, 2013, 05:44:20 PM »

This is one reason why you shouldn't be taking more than a week of Prednisone.
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Re: I have started my Peyronies journey... 1 month ago...
« Reply #42 on: February 10, 2013, 09:13:39 PM »

This is one reason why you shouldn't be taking more than a week of Prednisone.

Matt, I totally agree!  The prescription I have starts out with a large number of pills then tapers off every day.  I think it's a 6 day regimen.  I'm thinking this over very seriously before I even start taking them tomorrow morning.  I've never been one to take pills and avoid medicine if at all possible.  Generally, I try to stay healthy with adequate exercise (no problem for me with a heavy physical labor job) and good nutrition, minimum processed or canned foods.  I just recently cut back to only eating red meat about once a week. Otherwise it's normally fish or chicken... and have cut breakfast down to cereal or oatmeal 6 days a week with eggs, bacon, biscuits only maybe 1 day a week.
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Re: I have started my Peyronies journey... 1 month ago...
« Reply #43 on: February 10, 2013, 09:30:39 PM »

That's exactly the same type of prescription that I had used in the past with no problem other than maybe some constipation and perhaps some tinnitus. You should be OK with that.
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #44 on: February 10, 2013, 09:38:32 PM »

Tinnitus?.. maybe I'll get lucky and it will reverse my tinnitus... I've been dealing with that for about 14 years....
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Re: I have started my Peyronies journey... 1 month ago...
« Reply #45 on: February 10, 2013, 09:59:54 PM »

BB, just an FYI but I eliminated grains and sugars and it reduced my peyronies pain a fair amount.   I mention this because you said you were going to replace eggs, steak, ect with cereal and oatmeal.   If you are like me, this will spike your glucose/insulin and increase penile pain within minutes of eating.   Also new research is showing that refined grains are contributing to diabetes and high cholesterol (not healthy saturated fats !).   It goes against conventional medicine, but saturated fats that come from animals, are actually very good for you and will likely lead to less hunger cravings.  Basically if it comes in a box or has a bar code, you probably should eliminate or cut down on it.  Try to increase update of vegetables and meats.  Get plenty of sleep, and you already have the exercise requirement covered, given your fortunate situation at work.
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MattFoley

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #46 on: February 10, 2013, 10:15:58 PM »

funnyfarm, I couldn't have said it better myself. I think oatmeal is OK if it's the kind without sugar and it helps if you add cinnamon to control sugar as well as other great benefits (http://www.healthdiaries.com/eatthis/10-health-benefits-of-cinnamon.html). Oatmeal seems OK for me under those conditions. Were you eating the kind with sugar in it or is all oatmeal a problem?


BillyBoy2, I've been dealing with Tinnitus myself for a long time. The suggestions funnyfarm made may very well help. High amounts of sugar and sodium make my Tinnitus go nuts. Also, Ibuprofen and aspirin do it. Smoking does it. High blood pressure can do it.

Prednisone might make it go nuts.
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funnyfarm

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #47 on: February 10, 2013, 10:28:58 PM »

It was instant oatmeal, with sugar.  Silly me, it was like injecting sugar into my bloodsteam.  Now I have eliminated almost all grains and sugars, at least for now.  If I can tolerate a small amount I will add them gradually.  I would really encourage you to experiment with your diet.  It helped me when all the so called natural supplements failed.   Also you will live healthier and longer when you listen to your bodies dietary needs.   

BTW antibiotics and otc pain meds give me horrible tinnitus.  Like my body screaming "enough already with the damn drugs" !
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BillyBob2

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #48 on: February 10, 2013, 11:09:37 PM »

Matt & FF.  I think you guys are dead on with your dietary recommendations and logic.  I'm quite sure that my tinnitus began from too many loud noises & big bangs.  One incident in particular was when I was running a junky chain saw and the muffler fell off.  My ears rang for days after that.  I've also used a cordless nail gun and air nailers very close to my ears.  The cordless sounds like a 45 pistol when the trigger is pulled.  Too, I'm a smoker and have been an extreme coffee drinker in the past.  Never have made a good drunk tho'.. hardly every drink.  As for the cereal/oatmeal.  I at least swapped the sugar using sorghum molasses as a sweetener for the oatmeal.. and one of my favorites is to add cinnamon.  If I don't use the molasses I'll use honey.  The reason for going with cereal & oatmeal instead of bacon & eggs was the elevated cholesterol.  As for animal fats.. I've cut down but not eliminated them.  Unhappily... when all this started I had just carved up a whole ham which I planned to eat rather than the bacon or to make sandwiches out of or just fry some up with my beans & taters. 
    I've been scouring the internet for the past 6 weeks looking at all the dietary recommendations and every page seems to conflict with what I've already read.  It seems that if I made a list of what I should be eating and another list of what I should not be eating there would be nothing left to eat and I'd be down to just drinking about a half gallon of water a day and watching my pecker shrivel up to nothing.  I still have the ham which I cheat and eat a piece every once in a while and it seems to me that other than giving me a lot of palatable satisfaction I just feel better afterwards... maybe it's all in my head.  I have been eating sliced turkey and pretty much converted to all poultry and fish.  I have a LOT of fish filets in my freezer from all the fish I've caught, hybrid stripe bass, spotted bass, and catfish.  The big thing in the meat department I try to avoid is beef.  Commercially produced meats have so many chemicals and steroids in them that I'm kind of afraid to eat them.  I'm with you too on eating anything out of a can or box.  I wish I had better access to fresh locally grown produce but about the only bean I can find is either in a can or dried beans which I love with a little pork thrown in for seasoning. 
    I've read that for something or other tomatoes are bad yet other things say red veggies have something special in them I should be getting.  I've picked up on eating olives.  I have been eating a lot of beets which are supposed to be really good for your health, but now I'm reading that they may aggravate one thing or another.  So far about the only thing I can think of I haven't heard anything bad about is yellow onions.... (core out the middle, pack in a beef bullion cube and butter then wrap in aluminum foil and bake in oven for 45 minutes... high in sodium but DELICIOUS!).  I do enjoy turnip green or spinach occasionally but a couple of things I try to eat kind of regularly are egg plant and squash.. and I prefer them deep fried but lately I've been rolling in corn meal and baking them.  As for salt... I've switched to sea salt.
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funnyfarm

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Re: I have started my Peyronies journey... 1 month ago...
« Reply #49 on: February 11, 2013, 12:08:29 AM »

you might want to check out this article:

"Inflammation. What is it caused by? Not fat, but carbohydrates. Yes, sugars and processed carbs are highest on the list of perpetrators here, but grains and starches as a whole contribute to the problem. LDL rises directly not with the amount of saturated fat you eat but with rising levels of inflammation caused by carbs and trans fats."

Read more:

http://www.marksdailyapple.com/cholesterol/#ixzz2KZ2Hah99
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