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Tim468
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« Reply #70 on: May 05, 2006, 12:46:41 PM » |
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Will, I think that there would be no benefit to applying a vacuum to only part of your erection, and it would not be easy to do anyway. I agree with Hawks comments. It sounds like you may have a generalized fibrotic process, without a specific area of plaque. That is how it is for me - I have never had a hard induration or nodule that could be palpated. That suggests that something like iontophoresis of verapamil (IF it could penetrate to the area of fibrotic change) would be better than "targetted" therapy with a needle. One thing that emerges from my reading of men's experience here is that vascular supply or blood flow is an issue frequently. It may be reduced because of stress and adrenaline and fear reactions - but more often it seems to be impaired a bit. One thing that many very good urologists do is to determine the vasular function of the arteries and veins, to see if there might be a vascular basis of the ED component of Peyronies Disease. It makes me think that it would be VERY NICE, if the urologic ommunity could come up with a consensus on how to *evaluate* Peyronies Disease - what studies are to be done, and how, and when. In my own medical community (lung disease) we are constantly trying to see what works best, and to simultaneously strive to USE the best practices for our patients - across the board. This may be irrelevant, but I think many of you would find this article interesting. It is about how doctors decide what to do, and how patients find out how "good" their doctors are. It relates to my own area, but you may find it stimulating to what could be done in this field. I may just have to do something about this myself (s)... Tim http://www.newyorker.com/fact/content/?041206fa_fact
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52, Peyronies Disease for 30 years, upward curve and some new lesions.
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Hawk
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« Reply #69 on: May 04, 2006, 11:21:03 PM » |
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If your plaque is in the spongiosum, you would no doubt have a downward curve as I had. In response to your question about only using the VED on the distal half, I doubt that you could get a seal.
Have you ever used the large cylinder? Can you remove the VED and milk blood into the distal half?
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Will
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« Reply #68 on: May 04, 2006, 11:08:46 PM » |
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Thanks very much for the valuable advice ComeBackid, Tim, and Hawk - your sincere information has triggered me to think deeper with this issue, and also to get a second opinion before electing for surgery. One question about the ved...I have been using the soma correct for 1 year now...the bottom half of my penis when erect is fine...it is the distal end that is narrowing - what is your opinion in just using the pump on the distal end (not against the abdomen since the bottom half is fine) and just pump that area up? Also, as of recent, my uro came to the conclusion my Peyronies Disease orginated from being catherized for a long period of time. I forgot to ask him this, and I have never seen any information in reference to where the scar tissue is from peyronie's disease if from a catherator? Would the scar tissue just be located in the ureatha? I believe there is a smaller area of corpus spongiosum, which has a small role in absorbing blood for erection, and to, the ureatha goes through this area. Is it possible, that since my uro can barely find a peyronie's lesion, could the majority of the lesions be in the ureatha area? Thanks.
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Hawk
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« Reply #67 on: May 04, 2006, 10:20:55 AM » |
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Will,
First, I will probably move these posts to the "Erectile Dysfunction" topic since that is primarily what they deal with.
It seems to me that you are saying that ED has always been a problem and Peyronies Disease is secondary. The only advice I can give is to read every word of our ED topic. I have a pretty good knowledge of ED from first hand experience after my radical prostatectomy. If you ever inject, be very gentle, meaning steady hand, no tilting of the syringe after entry, and above all, apply pressure to the injection site for a full 10 minutes after the injection. If you have a wife or steady, understanding partner, I recommend a VED for erection and intercourse instead of injections. I also suggest you ask your doctor to try trazodone in very low doses (see earlier posts in this topic) to see if it contributes to night time erections.
Finally, nocturnal erections are different than erections from physical or psychological stimulation and are not fully understood. It used to be thought that if you got night-time erections that it meant day-time erections were possible unless there were some underlying psychological triggers that interfere. That is now being considered to be inaccurate.
All day-time erections do use the same nerve pathways regardless of how they are achieved (psychological stimulation, masturbation, foreplay). If you could get an erection from masturbation but not with a female partner there could be no strictly physical reason to explain that. Keep in mind that adrenalin is a very powerful anti-erection agent. Adrenalin is released due to fear, stress, and anxiety. At the same time those same emotions take your focus off of the sexually stimulating psychological aspects that help cause an erection.
I would not consider surgery until I exhausted every psychological, pharmaceutical, and divice (VED) option available with a sexual medicine MD and a psychologist. Also, you don't mention if you are on any meds that could contribute to this problem,
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Tim468
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« Reply #66 on: May 04, 2006, 09:34:24 AM » |
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Dear Will,
Your past medical history of having been able to acheive erections when masturbating, but not with women, suggests that - at that point - there was an emotional component. To whatever extent that such a psychologic component can still be present, it is probably worth investigating further.
FWIW, I think almost ALL of us could benefit from psychological counseling at some point - I know that I certainly have. Having a "physiological reason" for ED does not mean that the mind cannot kick in and make it worse. Given the territory we are talking about, not having a psychologic component to ED would be the exception.
The current failure to respond to therapy that should make it all work is very confusing, and suggests a vascular problem. You have detailed so much, it is hard to imagine that you have not looked into this completely, but be sure that blood flow is evaluated. I would also see if you have nocturnal erections as well.
It sounds like part of the problem is that you have a minor Peyronies Disease related deformity (or at least a small lesion), but without erections, how can you even tell if it is better, worse or unchanged? But I do not believe that it is likely that Peyronies Disease is causing the worsening of your erectile function.
I too would be quite leery of taking a surgical option yet.
Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.
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ComeBacKid
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« Reply #65 on: May 04, 2006, 03:46:02 AM » |
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Will, I would recomend Ionotophoresis and the VED, if you read the section on VED's youll find much good information. For some cases the VED can straighten the penis out and help to cure ED. Also there have been some promising studies done on the Iontophoresis, as it is proven to drive verapamil into the target tissue. And on another note I know that most people on this forum question topical verapamil, however I have been using it and I can tell it definately increases blood flow while in the flaccid state, this I believe can't be a bad thing. I wouldn't go to surgery just yet, your going to lose some length, and possible rigidity in your erections depending on the surgery choice you make. Also you may lose sensetivity, as anytime they cut into your penis your going to damage some nerves. Some will regrow but it will never be the same, and this in turn could lead to future Erectile Function. The IONO treatment is not cheapt but definately worth a try in my opinion. The medical studies back it up. You just need a prescription and you can get the machine and the liquid medications from www.physion.com- I'm not trying to advertise for them just trying to direct you without searches and hassles. Old Man has a great deal of knowledge dealing with the VED treatment as well. In my opinion would should exhaust all possible options before attempting surgery. ComeBackid
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Will
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« Reply #64 on: May 04, 2006, 12:48:21 AM » |
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Hello everyone...I would greatly appreciate some advice on the following: As I have stated before on this forum, I am curently 34 years of age and have been impotent since the age of 18. It is noted, that I went through a normal stage of puberty and got erections all the time, which included strong nighttime erections. At the age of 18, for some unknown reason, I became impotent, however, I could still attain strong erections when I masterbatedwith strong erections, but never upon wakening in the morning or when attempting sex with a female. Years went by...still could attain erections when masterbating, but none with a female. Waited and waited until viagra came along...I was cured...felt like a normal man again. However, one night when masterbating, I attained a very strong erection without viagra, and a very distorted penis appeared with a dent on top of the shaft. I have never been able to obtain an erection again, even if masterbating - potency is gone. This was 3 years ago and am being treated for peyronie's disease, and have been for the last 3 years, however, only a very small peyronie's area was found - it can not be felt with the hand - it is only seen with ultrasound - V injections are not an option for the area being so small, the uro feels it will not help. Nothing worked...the uro mentioned trimix - it worked awesome! This trimix worked wonderfully each and every time, but after 3 months, it not longer gave me an erection...just a semi-response and a bigger flacid penis for about 2 days. My optimal dosage which worked great was .05 to .07. I then increased it to 1cc and still no usable erection. Today, I even tried 75mg. of viagra and 1.5cc's of trimix and STILL no usable erection. What's going on here?? I am so confused! Everywhere I read on the internet, it seems as if everyone responds well to trimix! Do men sometimes use more than 1.5cc? The medication was not expired and was refrigerated. Can someone please give some advice on what I might be doing wrong? I follow all directions on how to inject; however, I have read where most men insert the needle in the penis, and then push hard to gurantee it gets to the right tissue...I dont usually push very hard after I insert the needle...I figure since it does hurt, it is at its right depth. The uro states I am a good candidate for penile ligation surgery...but wanted me to try these very non-invasive medications. Regarding penile ligation surgery, I have read this may not be a long-term cure, but I figure if it works well for 5 years and symptoms of leaking appears, my opinion is that the leak will not be as bad as now, therefore would respond very well to the oral and injectible medications again. And, if I am hearing correctly either gene therapy and/or regrowing of smooth muscle for the penis will "possibly" start being offered to the public in about that time frame. Any thoughts for my justification for having the ligation surgery, or would you keep trying higher doses of trimix? Thanks.
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Hawk
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« Reply #63 on: March 23, 2006, 12:00:24 PM » |
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Youngpain, I read your post under "Urologists....." where you said He placed me on Pentox twice a day, and Cialis once every two days to increase nightly erections which he said would help with keeping the plaque down If you have a chance to discuss this with him, I would be interested in asking him about 25mg trazadone (1/2 of a 50 mg tablet)per night. It cost 1.5 cents and my experience (and that of others) is that it works as good for nocturnal erections as anything including Viagra, Cialis, or Levitra with none of the side effects of those drugs. It is 1/2 to 1/4 the usual prescribed dose for sleep problems and less than 1/4 to 1/16 of the dose prescribed for depression. The only difference that I can tell if I stop taking it for a couple days is the night-time erections.
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flexor
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« Reply #62 on: February 12, 2006, 01:33:32 PM » |
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You go to your own NHS GP. If he's willing to prescribe it, he will write a private prescription. You take this to the chemist and pay a commercial rate.
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furtil66
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« Reply #61 on: February 10, 2006, 04:22:43 PM » |
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I was wondering if anyone from the UK could tell me how they got hold of viagra. Since it's not available on the NHS do you have to go to a private doctor or can you just go to your regular doctor and then wait for an appointment to the hospital to see a speicialist.
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SteveW
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« Reply #60 on: February 01, 2006, 09:59:46 PM » |
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Cialis is my "drug" of choice. It has been dependable and less time sensitive than Viagra for sexual activity. I have had few/minor problems or side effects but got most of the described ones with Viagra. I only wish Cialis or Viagra had the power to overcome my hour glass and curve when erect. But at least, a dependable erection is achieved.
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It takes guts to deal with Peyronies Disease. Almost a 90 degree curve, hourglass effect, VI series & lots of ??
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Will
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« Reply #59 on: January 29, 2006, 04:02:21 PM » |
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Hi everyone...was on a post last night which mentioned the website of www.lionnutrition.com which sells liquid viagra and others. I request that some of you view this site and give your opinion...is it possible a company can break this medication down and sell it in liquid form? Thanks....
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bob
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« Reply #58 on: January 23, 2006, 05:25:47 PM » |
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I've only tried Viagra, and these were the freebies given to me by the doctor or his nurse. I have to say, it works like a charm. This doesn't agree with what's promised by the literature but I'm usually 'up' within a matter of minutes, and it definitely helps make up for the indentation/hourglass. It sort of has a lasting effect; after I've gone to sleep I notice myself waking up semierect or erect, all night long and into the next morning. I don't get a blue haze or a headache, but I have experienced some 'flushing' in my face during intercourse.
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Hawk
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« Reply #57 on: January 22, 2006, 08:37:36 PM » |
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gvr,
Thanks for the words of support. It is good to have you as part of the active conversation.
I was left with Total ED immediately after prostate cancer surgery. Since then, I have slowly progressed but I am still totally dependent on ED drugs for a daytime erection. I have tried all three, Viagra, Levitra, and Cialis.
Viagra gave me a bit of a blue haze the first time I ever took it but it never returned. It gave me a bit of a flush over my face at 2 random times out of 25 tablets. It usually gives me a somewhat stuffy nose. All these are known side effects but were not a big issue to me. One time I had a headache before taking Viagra and the Viagra seemed to make it worse. I only take Viagra if I have gone at least 6 hours without eating.
Levetra has given me a stuffy nose. It has the advantage that food, especially fats that are in most foods do not block its effectiveness like they do Viagra. Its overall effectiveness is about the same as Viagra for me.
Cialis has one huge draw back for me. About 3 days after I take it, I get a significant nagging backache for about a day. The pain is over the kidney area and is a listed side effect that some experience. I am not sure of the exact cause. I used Cialis early on for a few tries but gave it up. During that period, it worked no better than the other two. Now that I have recovered a bit maybe it would work better but the back ache rules it out for me. I does last for 36 hours as opposed to 3 hours for the other two.
Erection results between the three are indistinguishable for me but others may be different. A decent family doctor should give you a few samples of Cialis and Levetra. Mine gave me 6 ($60 dollars worth) and said “here, this should last you through the weekend.
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gvr1962
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« Reply #56 on: January 22, 2006, 07:16:30 PM » |
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Hi, I am new to the forum, and I think the support and information you provide is great and much appreciated. I have being dealing with Peyronies Disease for the last 3 years and with ED for the last 18 month. Viagra is not working for me as it used to do and I was wondering if anyone here has used Levitra, and if it is true you don't get the blue tinge vision gvr
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j
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« Reply #55 on: January 18, 2006, 07:34:06 PM » |
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furtil66 - I'm significantly bent (although not as bent as Larry) but the plumbing still seems to work ok. I think when Peyronies Disease first hit me I went through a period where it seemed not to. Some of that may have been due to inflammation, and also just the shock of this thing hitting you like a brick. In time some of the shock wears off.
Hope that helps.
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Larry H
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« Reply #54 on: January 18, 2006, 07:04:55 PM » |
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Just to give you one personal point of information. I've had Peyronies Disease for over six years. The top of the shaft is now completely covered with plaque from the glans to the groin area. Loss of length is 2", girth about 1/3 less, and between an 80 to 90 degree bend. I have never had any problem with ED including nightly nocturnal erections. They are ugly to say the least, but still very solid.
This is perhaps the exception rather than the rule, but there is no rule of thumb with Peyronies Disease. I'm sure good blood flow is necessary to keep tissue healthy, but it has not helped or prevented my disease.
Larry
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furtil66
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« Reply #53 on: January 17, 2006, 04:37:14 PM » |
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I was just wondering, in terms of Ed, to what extent everyone was affected. In my own situation i get erect so that my penis is erect about half way. But the head is always soft. THe big problem can be maintaining an erection. I'm sure everyone has been over this time and time again but I was just wondering.
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learn4life
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« Reply #52 on: December 28, 2005, 09:19:31 PM » |
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I take the ginko and ginseng as well. It worked o.k for me. I added yohimbine and that seems to work much better. I can't really see a diff when erect. I can however see a huge difference when flacid.
Yes ! Yohimbe can expand the arteries in the sex organs, increase the blood flow into the spongy tissues in the genital area, and thus promote erection spontaneously which can rejuvenate near dead penile nerves/arteries/veins.. That is why Yohimbine has been an erectile drug for treatment of impotency, as approved by the FDA. Please be very careful with Yohimbe though !! How much do you take?You see at a low dose (below 300 mg), the relaxant effects induced by Yohimbe are positive for health and sex; at a high dose (over 600 mg at 1% Yohimbine), it can cause over-expansion of the smooth muscles, which can produce panic attack in the brain, heart and digestive tracts. This happened to me before many times before finding out this info. At night while trying to get to sleep I felt extreme chest tightness, sweating and high blood pressure. Its side effects are temporary. When you stop overdosing your body, the symptoms will goes away. If the side effects occur, you get no erection Hope this helps. Cheers !
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learn4life
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« Reply #51 on: December 28, 2005, 09:03:46 PM » |
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How many of you have seen improvement in your ED from the initial onset of the ED to your current state?
Hey there, me again  Yes I have seen much improvement since damaging my penis since age 11 by overmasturbating which eventually depleted my neurotransmitters like acetylcholine, serotonin, GABA and dopamine nervous function. Along with extremely dangerous penile techniques/exercises, Alcohol damage which burned my insides which caused internal bleeding and also caused kidney and liver pain which totally depleted my whole sexual function from the inside to the outside. Eventually all the penile mechanical damage lead to Peyronies Disease at age only 16. Then during the late teen years ED hit me too big time. Advice to any Ed sufferer. Boost your neurotransmitters like acetylcholine, serotonin, GABA and dopamine nervous function. to rejuvenate your sexual function to help with ED like I have done. How ? Use l-tyrosine for dopamine, l-ariginine for NO, 5-htp for serotonin and choline for acetylcholine. Use pharmaceutical grade if possible as the quality is the best. Advice for Peyronies Disease sufferer: For mechanical damage I had to do a daily massage using a special cream and borage/Evening Primrose Oil to help with the damaged local tissues. I had done this throughout several years but stopped now and again due to some depression. Also due to my overdrinking only straight brandy since age 14 it had damaged my colon/liver/kidney/brains pretty bad. So I have done and still do a full body detoxification program from the stomach to the brain. It has really helped me get my energy back to my life and also after doing colon cleansing I now dont experience stomach cramp/bloatiness/pain and I take in the full nutrients from the supplements/herbs I take. I hope this helps someone out there who is struggling with ED+Peyronies Disease as it has really helped me through this tough journey since my early teens. Cheers ! P.S Update on Peyronies Disease massage. I now add Apple Cider Vinigar(ACV organic) into my daily penile massage and it seems to furthur soften the scars and helps to rejuvenate the penile nerves which has produced a much greater feeling when the penis is touched 
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SteveW
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« Reply #50 on: December 28, 2005, 03:12:53 AM » |
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Steve,
Are you taking any other meds for depression etc?
No other meds on board, Hawk. To be frank, I can maintain (with Cialis sometimes) my erection and perform sexually, as much as I can with my curvature, but no longer feel the erotic pleasure and build up to orgasm I have always enjoyed. Eventually, exhaustion takes over, the erection is finally lost and no orgasm or ejaculation ever occurs. I am left feeling completely drained, but in no way satisfied. The overall sensitivity of my penis seems to be gone. I can only attribute this to my Peyronies Disease.
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It takes guts to deal with Peyronies Disease. Almost a 90 degree curve, hourglass effect, VI series & lots of ??
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roadblock
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« Reply #49 on: December 28, 2005, 01:09:58 AM » |
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How many of you have seen improvement in your ED from the initial onset of the ED to your current state?
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Hawk
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« Reply #48 on: December 22, 2005, 10:06:01 PM » |
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Steve,
Are you taking any other meds for depression etc?
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SteveW
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« Reply #47 on: December 22, 2005, 09:46:07 PM » |
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Here's a twist on the ED discussion. I can obtain and maintain a usable erection, (Cialis is a nice boost when feeling insecure) but over the last 2 months or so, it has become virtually impossible to achieve an orgasm. The loss of overall sensation is severe and a "build up" to release just never happens. This is true whether I am having active sex or while masturbating. After a time, it just becomes to exhausting to continue and the erection is lost.
Since my plaque mass covers such a large portion of my penis, I am wondering if that may be the cause? Is it psychological? Or has Peyronies Disease damaged the nerve endings in my penis?
Frustrating to say the least.
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It takes guts to deal with Peyronies Disease. Almost a 90 degree curve, hourglass effect, VI series & lots of ??
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furtil66
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« Reply #46 on: October 21, 2005, 10:58:18 AM » |
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Just thought I'd keep everyone up to date. Still taking the high doses of ginko and ginseng together and on more than a few occasions I've woken with a a great morning erection. The best for years. So far, the rest of the day, has seen a slight improvement. Still six weeks of the recommenede eight to go though. Also, the ginseng seems to give me more energy during the day, and I feel mentally, at least slight,y more alert, and my desire for sex seems to be a bit higher to. I was just wondering if when you took it what dose you took. And if the ginseng was pure root.
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nick
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« Reply #45 on: October 12, 2005, 10:20:07 AM » |
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I take the ginko and ginseng as well. It worked o.k for me. I added yohimbine and that seems to work much better. I can't really see a diff when erect. I can however see a huge difference when flacid.
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furtil66
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« Reply #44 on: October 12, 2005, 04:24:21 AM » |
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Thanks for the advice. I've been taking the Panax ginseng, 3000mg a day, for a week, along with the Ginko 240mg and although it's early days I woke yesterday with a pretty good erection. Could be just a one off. Could be psychological. Ginseng is meant to take eight weeks, I read some pretty good trials in using Ginseng, but I'll keep you all posted as to whether it's any good or not.
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steven
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« Reply #43 on: October 10, 2005, 01:14:14 AM » |
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Futile,
Try acetyl l carnitinine (1000 mg) before sleep, it can help with nocturnal erections. If you can have nocturnal erections, my Doc says you can have normal erections, and if that is the case, then your ED might be mental. also try (l arginine 500 mg or more) you're young so it may be just mental. Have you told your Doc, you should...
Steven
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Hawk
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« Reply #42 on: October 09, 2005, 04:03:08 PM » |
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Welcome Futile, and thanks for the post.
I know that Ginko Biloba is a blood thinner as is the case with Vitamin E, ginger, garlic, and many herbs. I do not know that this property alone makes it much good for erections. There are some other choices on this thread that would be my first choices. Some are prescription, some are over the counter.
I have taken ginko at times over the years and never noticed an impact on erections. I have noticed a direct impact from some of the others.
Good to have you on the forum
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furtil66
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« Reply #41 on: October 09, 2005, 12:19:16 PM » |
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I was diagnosed when I was just 18, and barely get half an erection, I'm 29 now. However, I've started taking Ginko Biloba (herb in tablet form) 240mg a day and Ginseng, (Panax) 2000mg a day in teh hope that it will help. I was wondering if anyone else had tried this with success. 8 months ago I tried this for a period of about two months and did notice a differece, however, I lost my job and stopped buying the herbs. They are available in any health store and aren't actually expensice, about £8 for each. Anyways, it would be good to know if anyone ahs tried anything like this. Thanks
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steven
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« Reply #40 on: October 08, 2005, 01:29:29 AM » |
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RZZ,
I was heavy smoker almost 2 packs a day for 25 years. quit 2 years ago, Its easier to quit than you think, for one thing, stop telling yourself its very difficult, instead tell yourself its easy. Your mind obeys your commands.
2nd thing, ask your Doctor for a prescription for a nictoine inhaler, this is just like a cigarette but it only contains nictoine and it fullfills the oral gratification that us smokers are also addicted to., but lacks the other poisons that cigs have. You will need a prescription, DR will gladly give you one.
3rd thing -- quit the nictoine inhaler -- as it is addictive also, but its much less addictive than smoking, by the way your erections will be much stronger the day you start the nicotine inhaler and stop smoking, and once realizing that and seeing the difference, you may lose all desire to smoke, I did...(in my mind I associated smoking with weak erections) and it motivated me to quit, I will never smoke again.
When you quit smoking the body starts heaing itself in 20 minutes from your last cigarette.
It the best thing you could possibly do for yourself... Best, Steven
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Hawk
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« Reply #39 on: October 07, 2005, 08:18:13 AM » |
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Rzz, Great to hear from you and an excellent post. I agree about Peyronies Disease getting blamed too often for ED. Peyronies Disease most frequently strikes men at the age when ED most frequently strikes men, so many men with both assume they are connected and look no further. I am glad you did and that you reported back with some good information. Also there are a few very old posts on this forum from the early days before switching to smf that briefly discuss a Peyronies Disease/smoking connection. One way or the other, as you know, the Doc's advice will help way more than just Peyronies Disease. Sometimes we get caught up in dwelling exclusively on our penis. We forget there are actually more serious issue. If the ole ticker stops, erections are almost impossible. I think you have enough drive and goal setting to do this, especially since you now appreciate what is at stake. I smoked at least 2 packs per day but only from my mid teens to about 20. During that time I had a few failed attempts to quit. Once I quit for almost 3 months and was drinking and smoked a cigarette to see what it would be like. That’s all it took to get me drag me back to smoking. I have read and experienced that tapering off is almost a doomed way of quitting and causes many failures. One cigarette keeps the addiction alive. Cold-turkey has the physical addiction gone within 10 days. The psychological/situational urge lasts much longer. I wish you luck in setting a date and never looking back. Keep us posted. Inspirational Thought for the day: A good erection is way more satisfying than a cigarette!  A link I found from a search of our forum: http://thescooponsmoking.org/xhtml/effects/peyroniesDisease.php
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Rzz
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