GENERAL COMMENTS & Questions - that won't fit under any of our other topics

[Old Man]

Gibson:

I believe that Angus on here is from the UK, but not sure what part. Maybe he will read your post and answer you.

Old Man

[Angus]

  I'm sorry if I led everyone to believe I'm from the UK... I'm a USA midwesterner. I have a Scot heritage but have lived my life in the States. I can't remember who exactly, but I'm certain that we've got UK people here... so... UK people, chime in please!

[Old Man]

Angus:

Sorry about moving you to the UK! Somehow, I thought that from one or two of your posts that you were from Scotland.

Anyway, you have set me straight and we can move on from here. Midwesterner huh? I am from the very Deep South on the Gulf of Mexico.

BTW, I just sent a PM to a guy who wants to build his own VED. I steered him to you and Dr. Tim. He is on a limited budget and needs to save all the bucks that he can. Suggested that he look at your compilation of the VED thread posts and then maybe PM you or Dr. Tim.

Regards, Old Man

[PJ]

So I am looking for advice and I wasn't quite sure which thread to go to, hope this one is OK. I have been on the Pentox, L-Arginine, Cialis combo for a couple weeks now and I was wanting to keep a log of plaque measurements so that I can track objectively if there is any progress. This measurement is hard to do. Any advice on how to measure the plaques? Being inside the flesh this is not an easy task to do accurately.
---PJ

[Liam]

It is hard for someone to truly have an objective measure at home.  I can think of no way to quantify plaque without imaging equipment.  I guess you could get a micrometer (OUCH)  .

Liam

[floweredup]

hello all,i`m new in this neck of the woods so please be gentle! as thats what got me into this mess in the first place!,i found this excellent site whilst researching my condition,power to the people that run the site,reading it alone has lessened my symptoms considerably!,i`m a 30 yr old male and have been blessed,cursed,afflicted with peyronies for about 10 tyrs now,i live in scotland uk,and have just taken the plunge(pardon the pun) to be referred to a urologist.my condition started due to an indelicate sexual encounter when i was 20,i  had been in an 8 yr relationship,although we have been seperated approx 5 yrs now,one bone of contention(i gotta lay off the puns!) was how i viewed my condition,i guess  youre all well acquainted with the ups downs ins and outs of the condition.when this first happened during intercopurse i felt a pain and noticed my penis had swollen to something approximating a norwegian spruce, i applied an icepack and hoped for the best,i avoided sex and arousal for a few days,and when the time came i found i had a bend to the left in my penis,i went to a doctor,a young female student doctor not much older than myself who was more embarassed than i  was about it!,and proved somewhat fruitless,i went to another doctor also female who giggled and smirked,i picked my shattered male pride off the floor and went to see a male doctor,he mentioned peyronies but he admitted he knew little about it,there was precious little info about it in the pre net days,and no course of action was taken other than to see if it improved naturally,my  girlfreind was always saying i should get it fixed etc,which i initially and perhaps classically took as rejection,it is only with many years retrospect i now realise she was concerned about how the affliction affected me,emotional isolation,moodiness,loss of libido and sexual curiosity etc,it was very painful for the first 2 yrs during sex,tho there is now no pain,sometimes lovemaking was very satisfactory,sometimes not so,and it definitely changed me to a degree,i have occasional probs with erections but have found viagra and cialis somewhat beneficial,tho i am cautious about dosage,i have never been prescribed these as i thought an otherwise fit and healthy male would be laughed out of the surgery for asking for these drugs,lest the doc think i`m a sexual chancer wishing free recreational drugs on the nhs,i have obtained these drugs "on the street" as it were,they are expensive and hard to acquire,and damn near ever guy wants them peyroniies ed or not(the male psyches like that) however now i`m more confident about treatments and doctors etc i will be asking my gp about this,tho i prefer to wait until i`ve seen my urologist,i hit a point in my depressions where i realised i was letting a few pounds of flesh ruin my life,i reflected on the irony of allowing that particular body part to govern my existence whilst neglecting the organ that beats in my chest or the one that ticks away in my cranium,i learned to approach my condition with humour,which helped considerably in communicating with sexual partners about it, i was always terrified my condition would make intercourse unpleasant or uncomfortable with my partner,but if she is relaxed enough it would appear to make little difference,i was with one girl who found the condition wonderful and couldnt appear to get enough of it! apparently it hit spots a mere normal nob could not reach! anyway i`m glad to meet you all albeit virtually,and was wondering if anyone could advise me what to expect from my upcoming visit to the urologist,forewarned being forearmed etc i am fairly in the dark as to treatment options etc,tho i have had a good look at the site which has been a huge help in the way of probs shared probs aired etc,for many years i was in a very dark place about it all,but certainly am not now,it does still affect me psychologically to some degree,but i`m far more aware of it as i get older etc and better able to handle it,my confidence has returned,and ive become somewhat attached to this unusual condition!

[floweredup]

ps; i recently read a biography of 60`s counterculture icon allen ginsberg,and he had peyronies too,so along with bill clinton and the english footballer david beckham,we`re in distinguished company chaps! gives a whole new dimension to the oft repeated uk phrase "bend it like beckham"! for our us counterparts,beckham was renowned for his curved goal shots

[myrddin]

I just want to go on a mini-rant.  I read this article recently about the exciting new developments in combating Mad Cow Disease, which in it's conclusion, states:

At least 180 people worldwide have died after eating meat infected with mad cow disease in the past two decades.

My gripe is, why does a disease that has affected 180 people in 20 years get to benefit from cutting-edge technological advances? Peyronies Disease sufferers number at about 3% of all men, yet gets so comparatively little attention.  Granted, Peyronies Disease has never killed anyone... But still, I can't help but feel a little frustration at these skewed priorities!

[ComeBacKid]

Myrddin,

Not trying to pick apart your stats but... I think the newest estimate from Dr. Levine said that 10% of people suffer from peyronies disease.  This was a significant rise in the percentage from past estimates.  Being Peyronies Disease sufferers we gotta help our cause as much as possible and use the most up to date statistics when we are out there talking to urologists or whoever.  It seems as if peyronies is finally gaining some steam in recgonition and lately with the advancment of collaganese.  I've been watching our forum statistics grow and it seems like people are coming out of the woodwork with peyronies- tons of new people.  This is actually encouragining.  

Myrddin, minus your stat, your point is a good one, kind of reminds me of all the attention restless leg syndrome gets as well...

ComeBackid

[floweredup]

i think one of the problems of peyronies,concerns lack of communication,for every man willing to stand up and be counted,there is likely to be 2 or 3 men who will stay on the sidelines and hope it goes away,which was my initial reaction,i have never in day to day conversation ever come across the topic,oddly however my current girlfriend was aware of the condition,and several of her girlfriends are also aware of it or have experienced it by proxy,women are traditionally far more communicative creatures,i estimate and predict many more cases of men intheir early 20`s or mid 30`s will be diagnosed,i ascribe this to viagra`s current status as a recreational drug along with cocaine and ecstacy,in the modern "zeitgeist" many young men view viagra as a status/lifestyle drug a rite of passage thing,i long grew out of illicit drug use but i was first afflicted with this condition as a rampant 20 yr old during a bout of intense cocaine(anaesthetic) and very pure mdma(ecstacy extreme stimulant) fuelled sex,with hindsight throwing viagra into that mix is surely tempting coitus fracturous!

[floweredup]

another feature could be a lack of peyronies "role models",many celebrities etc regularly speak outv about breast and genital cancers etc,whereas in  the case of bill clinton and the english footballer david beckham.whom i mentioned in a previous post,both these mens conditions came into the public realm as a result of extra marital affairs,and the women they cheated with mentioned the condition as a way of proving their affairs thus maximising extra large payments from newspapers etc for the lurid details,if a figure like beckham was to publicly acknowledge his condition,and bring it forth in the interests of public education,we would all be better off,however in todays celebrity fixated culture most likely the condition would become fashionable like shaved eyebrows or body piercings! and every man would want one,(imagine the adverts "hey youth of today,you too can bend it like beckham,with new improved peyronies,available at stores near you,only £900",some capitalist pig would be sure to make some coin off it!)  

[Hawk]

Some thoughts,  Myrddin, your point is a good one except to a degree, however we must be fair and consider that madcow disease if not controlled, has the potential to spread as a contagion and kill many, in addition to devastating food supplies.  On the other hand, restless-leg syndrome is very common, open to general discussion by those affected, and thus constitutes a large market.  We cannot be silent and compete with such conditions.

On the subject of how many men had Peyronies Disease.  While I reject the 1% figure, at this point I also have a problem using a 10% figure.  What does that figure mean?  What is the documentation?  Does it mean that out of a 100 men of all ages randomly selected that 10% manifest symptoms of Peyronies Disease?  Does it mean that 1 out of 10 men will develop symptomatic Peyronies Disease if they live to 80 years old?  The problem is that to my knowledge, Dr. Levine or no one else has given us firm numbers based on objective random analysis's.

[ComeBacKid]

Floweredup,

I have often thought about what you have just said- we have no role model with peyronies.  But then again who is going to come out in the limelight that is from hollywood and say " I have a bent penis- its called peyronies."  Wow I could see it now on saturday night live, jay leno, etc... they would get shredded- hell thats just asking for it.  I've thought though how much publicity an old fart like bill clinton or bob dole could bring- for you guys in england a "mate" like beckham.  The more and more I think about this it just seems to unrealistic.  I think to gather steam and bring attention we almost need a porn star like ron jeremy or someone who could come out and say " I have this disease and I'm fighting for all males around the world- his super size in my mind would somehow lend to his credibility and I doubt he would be joked about as much as say a bill clinton or bob dole.  Anyhow, at least we got hope, it keeps me going...

[floweredup]

yes i know exactly what you mean ComeBackid,the nearest equivalent i could think of would be john wayne bobbit,but his story was at the extreme and bizarre end of the spectrum,being an irish scot i`m a celtic fan,so i wont start about english football!,beckham means little to me,but he`s notoriously inarticulate to the point of autism, wears skirts lives a ridiculously ostentatious lifestyle and is married to a ludicrous ex pop star wife who has repeated breast augmentations etc and the demeanour of someone with a lemon wedged in their bottom,and is now famous for shopping,he would most certainly not be an ideal poster boy for peyronies! ron jeremy probably would be ideal,he seems quite down to earth! something that has shocked my innate scottish frugality is how much money the guys in the us have to fork out for treatment,for all the faults of the british nhs treatment is free for all,regardless of employment or not,we have a standard prescription charge no matter type or amount prescribed which would equate to roughly $11,we have private doctors etc but with rising taxes,utility bills blah blah most of us prefer to err on the right side of bankruptcy,but indeed as for peyronies role models in the public media arena,i think we shall see pigs fly first

[scott]

ComeBackid,

I don't know if Bill Clinton is an "old fart", but I almost certainly am, since I have absolutely no idea who Ron Jeremy is.  Do you think I can be redeemed?

Scott

[Liam]

Scott,

You are redeemed by not knowing.  He's a former (I guess) porn star who does a cheesy infomercial late at night for "male enhancement" product.

[ComeBacKid]

I believe the product he pushes is enzyte or something like that.  Basically the scene is an interviewer talking to a "husband" and "wife," the wife says how much more satisfied she is yada yada, its ultra cheesey, then they throw in jeremy, one thing I noticed is they avoid the words "penis enlargment," and say words like "natural male enhancement," " better performance," and "endurance."  Actually a more credible reputable porn star would be one like Peter North.  Maybe sometime soon "The Donald," will just admit he has peyronies and pour hundreds of thousands into research  

[Larry H]

I would respectfully request that all go to the PDS home page and re-read the awareness page. It's easy to forget the root of the problem being discussed here. As I said in that page using a famous quote from Pogo years ago (for those of you old enough to remember Pogo) "I have seen the enemy....and it is me".

As far as the 10% number, if you consider every man from birth to death, I think that the number may be very accurate. However, once again the reason we don't have solid numbers is the reluctance of men to come forward with their condition. There is no greater service the members of this forum can bring to the fight against Peyronies Disease than encouraging Peyronies Disease patients to come forward with their disease.

My Best,

Larry

[floweredup]

hey ComeBackid,we would know if "the donald" had peyronies,if he did then trump towers would lean like the tower of pisa!

[gibson101]

hello gents!!

Just a quick question. My first urologist suggested I get as many erections as possible incase i do have pyronies. I am taking a 1/4 pill of CIALIS as directed by docter each day. At night I wake up all the time with erections and

[gibson101]

SORRY PRESSED THE WRONG BUTTON AND POSTED THE ONE BELOW!! HAHA

Let me continue. I am worried that I could be doing damage with having erections at night for too long..do u think this is possible?? Also getting as many erections as possible could not be too safe either.. I get slight pain after ejaculation this worries me a little but this is not nearly as bad as it was a month ago. Off to another docter soon to see what he has to say maybe referal to ANOTHER urologist!!ahhhhhh....frustration

Kind regards

[Impala]

Hi,

This is my first post. I am hoping for some insight and some direction for my situation. I am in my mid 20's and have developed pain in my penis along with a slight indentation on the top left near head. This situation started about 8 months ago after i bent my penis to the right in the flaccid state. I was not rough when i did this. My penis curves to the left about 30 to 35 degrees and has always been this way. When i bent my penis to the right there was no pain at all. The next day when i woke up it was very sore. The soreness went away for the most part about a month later. Then one day when i was masterbating i felt a pin prick on the left side of penis. That was the beginning of the worst pain i have ever experienced. It has been with me in some capacity for about 8 months now. The indentation came very suddenly sometime within a two week span about 4 months after i felt the pin prick. I gave my penis a rest for two weeks along with taking vit e, vit c, and some enzymes and when i had an erection i noticed the indentation. I have been to three doctors, one being a specialist and they all say there is no scare tissue and that i do not have peyronies. I was so relieved when they said i didn't have what i feared i didn't push the pain or indentation issue.

The indentation does not change the direction of penis but it is there and is still painful, some days worse than others. I am wondering what part of the penis would have to change for this to happen? Should i go back to a doc and have an ultra sound or an MRI? I am embarrassed, confussed, and frustrated. It seemed like the docs were insinuating that the pain i was feeling was all in my head. Any thoughts or suggestions would be greatly appreciated.  Impala

[Tim468]

Dear Impala,

Welcome to the site!

I have found that sometimes docs will either insinuate, and cetainly start to believe that something is either "all in the head" or "fake" when they are unable to understand it. I see kids with lung disease and it is asonishing how often I hear that story - "He said the cough wasn't bronchitis since it didn't respond to antibiotics and said it was a habit cough" (even though the patient coughed in his sleep); or "He's a happy wheezer - why are you insisting that he get medicine? Do you want him to be sick".

This problem can be worked out quite easily. Go to another doctor.

To be sure that you are not contributing to the communication problem that you are describing, do the following:

Make a list of the physical findings and a timeline of appearance. A "dent" is a finding of Peyronies Disease, IMHO - if it has appeared after an injury of any sort.

Secondly, pain is abnormal. Write down when you feel the pain; where it is located; what makes it worse and what makes it better; describe how it feels (sharp, dull ache, stabbing, throbing, etc).

Tall your story in a neutral way, like you did here - and take your time if you need to. You can say that it is hard for you to talk about, and that you fear that previously you have not been able to describe the problem adequately before the visit was concluded, and ask for enough time to talk when you make an appointment (also be sure to discuss with the scheduler that you need time to discuss more involved matters and need an "initial" or longer appointment slot when making the appt).

Weolcome and good luck. It may be Peyronies Disease or maybe not, but in any event it is not normal and needs some sluthing to figure out what it is to be fixed. Good luck!

Tim

[Fighter]

Does anybody buy Cialis over the internet? Could you lead me to a honest site at an honest price?

Thanks

[Hawk]

I have no faith in internet drugs.  It seems that anyone dealing in such an unprofessional practice would be unscrupulous by the very nature of the business they re in.

I am interested in any sound information to the contrary.

[Fighter]

I agree but I thought maybe someone out there has dealt with one that might be reputable? I bought some about 3 years ago without a prescription and I like to use it on long/special weekends (pleasure) so I really don't want to get a prescription.

[DannyOcean]

Hey all.  One of the things that I've noticed is that throughout the day I'm often subconsciously clenching my PC muscle (the muscle you use to stop the flow of urine, too lazy to look up the spelling .  It's definitely stress-related (like someone who would clench their jaw without realizing it).  I don't feel like I'm under a ton of stress right now but I am coming off a period of pretty heavy anxiety and I wonder if some of the physical habits are still with me.

Anyway, I'm wondering if anyone else has noticed this (or will now that I mention it).  This seems like a strange theory but I wonder if clenching this throughout the day could lead to less circulation to the area and therefore contribute to Peyronies Disease.  It's a little out there but given how important the PC muscle is in terms of sexual health, etc. I wonder if this could be a factor. ?

[Liam]

http://www.blackwell-synergy.com/doi/abs/10.1111/j.1743-6109.2006.00404.x?prevSearch=allfield%3A%28peyronies+2007%29 - Measurement of Penile Curvature in Peyronie's Disease Patients: Comparison of Three Methods

http://www.blackwell-synergy.com/doi/abs/10.1111/j.1743-6109.2006.00397.x?prevSearch=allfield%3A%28peyronie%27s+2007%29 - Study of Interstitial Cells in the Penis: Human Study

[Steve]

Liam,
Let's see...according to the references:

Our results show that the degree of curvature measured using vacuum-assisted device and AHP (At Home Photography) is underestimated as compared with the gold standard ICI (intracavernosal injection)

That means that I'm really more than 70 degrees!  What a depressing way to start the week .  Now, what exactly is a goniometer?

[mlassard]

Thankfully the lady whom was going to take the library comp allowed me only a few more min because I told her what I was doing.  She is about 30 something and has never heard of Peyronies Disease, but her face was almost white with the fear of the unknown.  She thanked me and i asked her to inform her husband....

for those who are weary of the fact that vitamins are on the target list for the international communites war on health (operation population control)  here is a breif excerpt from the news....  it is important to note, that you are not less human or less of a man for having Peyronies Disease.  don't be afraid, be angry.  for the cure is out there and we just haven't been allowed access.  

don't believe me.  do your own research, then make a conclusion no your findings.  it doesn't matter if your vitamins come from any of the 50 states, your illegal income tax collectors don't care about you...

'we shall prevail!'

***********************************************************

HERBAL HOLOCAUST
  Underground drug dealers may soon be peddling illicit Vitamin C and other dietary supplements, including herbs. Police may soon have the authority to break down your door and search your fridge for health food. Health enthusiasts could one day be rounded up like prisoners of war and have their homes confiscated and their livelihood destroyed, like marijuana users and growers.

War on Health

   In some countries, the War on Health has already begun. In Norway, Germany, and Australia, Vitamin C and other health supplements are already illegal in moderate doses, and weak tablets can only be bought over the counter for, on average, 18 times the price we presently pay here in Canada. Norwegian vitamin distributor John Hansen reported being chased by undercover agents for his part in selling Vitamin C above the 200mg limit.1
   In South Africa, vitamin distributor Clive Buirski recently had his shipment of vitamins seized by customs authorities intent on preventing them from passing into the hands of alternative health practitioners.
   In Canada too, the process is well underway. In the past decade, the Health Protection Branch (HPB) has made over 100 health food supplements illegal, 23 of which are still available in US stores. One of these "dangerous" herbal remedies still available in the United States is DHEA, a derivative of wild yam extract which has been shown to promote longevity and strengthen immune functioning. With less side-effects than a cup of coffee, DHEA has been a controlled substance since December 19, 1996, under changes to legislation suggested by the HPB.2

If you say it's good for you, it's a drug

   The Food and Drug Act defines a "drug" as including any substance "for use in the diagnosis, treatment, mitigation or prevention of a disease, disorder, abnormal physical state, or the symptoms thereof, in man or animal." This incredibly broad definition can be interpreted to include vitamins like Vitamin C, used to treat and prevent the disorder of scurvy, plants and herbs with therapeutic uses like garlic, ginger and peppermint, and even ordinary food and water, since these act to prevent the abnormal physical states of dehydration of starvation.
   The HPB has decided that once someone claims that a vitamin or herb can have a therapeutic benefit, it becomes a drug. This means that peppermint and ginger tea would be considered a drug if the brand name or label suggests that it could be used as digestive aid.
   It's not even necessary for the person selling the herb to make a health claim for the product. As long as someone, somewhere has claimed that the herb or vitamin can have a health benefit, it is considered a drug. In fact, some herbs have been banned from sale by the HPB simply because their names indicate a possible therapeutic use. Eyebright, cramp bark and feverfew have all been prohibited for sale in Canada, simply because their names denote their traditional medicinal use.
   Jean-Marc Charron, Chief of the Drug and Environmental Health Inspection Division of the HPB, warns of the penalties of being caught trying to sell any of these herbs or vitamins that have been deemed "drugs" by the HPB:
   "The penalties for trafficking and possession for the purpose of trafficking are severe, the length of imprisonment ranging from a term not exceeding eighteen months on summary conviction, to a term not exceeding ten years on conviction by indictment."

[Tim468]

Mlassard... I reviewed your other post today and the one from December 30. Although you may have a point - it is murky, and that is being generous. I have never seen a more irrelevant, disorganized, jumbled, flight of thought post on this board, ever. I can only imagine what the poor lady in the library was thinking.

[ComeBacKid]

Hey guys,

I've recently had a major setback in my treatment.  After sticking with the VED and adding in pentox a little over two months ago, I've recently had some setbacks.  I seem to be losing more sensetivity in my penis, I never had this before, my penis is getting less sensetive to touch and orgasms have no intensity.  Besides this I also notice a hardening of my penis all over even more than before.  I also can't really hold much of a full erection anymore.  All these setbacks have come over the past two weeks kind of all at once.  Initially I saw an increase in flaccid size from the VED, when I added the pentox I saw an even bigger increase in flaccid size and more full solid erections that increased size in the erect state as well.  This is pretty depressing, especially since the pentox is supposed to stop progression of the disease, nonetheless I will still stay on the medication and stick with it for now since there is no other hope on the way anytime soon.

ComeBackid

[jon]

blah.
so the girlfriend broke up with me last week. which sucks because this whole peyronie's thing wasn't an issue with her at all. meh.. F~@< her.
so being that I'm a 20something I guy, and a dj, I did what any 20 something guy, would do. I hit the club. Ended up hooking up with this chick and we ended up back at her place. Which is where this story takes a tragic turn.
The whole time we're fooling around I had a good rock hard erection, but as soon as it was time to get down to business I just completely lost it. I don't know if it's psychological or what. I kinda have to assume it was, because, like I said, I was ready for business just a couple minutes prior.
Fortunately, she was cool about it, especially after I explained the peyronie's thing. still kinda sucked tho. yeah, the much needed ego boost was great, but the soldier standing down when it was time to perform was and is frustrating.

[Liam]

By what you said, the plumbing seems to be in order.  

[ComeBacKid]

Jon,

Sorry to hear about your story my friend.  I seem to be losing all feeling in my penis it is going numb now after 8 years and I can no longer really hold a full erection, I think peyronies has got the best of me finally.  Hang in there buddy it can get A LOT worse!

ComeBackid

[Hawk]

ComeBackid,

I am sorry to hear of your bad news.  

Loss of feeling or sensitivity in the penis is certainly not typical of Peyronies Disease.  I don't think I have ever heard someone connect the two in the tens of thousands of posts I have read.  I know I have never heard of a medically confirmed connection.  Are you sure something else is not going on with your condition?

[ComeBacKid]

Hawk,

I'm not sexually active so I couldn't have any STD's or anything.  I recently had a TB test that was negative as well.  I still feel sensation during orgasm, but the buildup to that my penis is pretty numb and dulled.  It reminds me of back when I was on anti depressants and it was just really hard to achieve ejaculation.  I highly doubt it is anything other than my peyronies.  More hardening of the plaque and the inability to hold an erection without constant frequent stimulation comes at the same time.  My whole tunica must be covered in plaque, the whole thing is hard all over.

ComeBackid

[jon]

It reminds me of back when I was on anti depressants and it was just really hard to achieve ejaculation.  

ya know, that never occurred to me, the anti depressant angle, because I'm on wellbutrin.

but there is a happy ending to the story, pardon the pun, that came later in the weekend.

[Hawk]

Welbutrin is known for have less sexual side-effects than most antidepressants

[jon]

right, i realize it's not a common side effect, but stack peyronie's on top of that, and some degree of performance anxiety and well.. it doesn't make for a good combination. I allow that it i was likely mostly performance anxiety, and just anxious about how well crooked penis would be received, figuratively and literally.

[PJ]

Wellbutrin is a great medication. We often use it for  people with schizophrenia who are far too sedated from their anti-psychotic meds and suffer from negative symptoms like depression. Its main problem is that it tends to cause increased anxiety and sleeplessness in some individuals. In my experience it is not inconceivable that it could contribute to performance anxiety.

[Liam]

Depression itself could cause many of the problems discussed, huh.  Thats one of the problems figuring the whole mess out.

Liam

[Tim468]

ComeBackid, Here is a quick trouble shooting thought or two.

First, check to see what the shape of your penis is when it is totally hard. That is, when it is sucked to life by the VED, determine how much angulation, denting, etc, that you have, and contrast that to what you used to have. What you see is what you get. If you are unable to achieve erections that look like that, then you may have some erectile dysfunction, but that does not mean that your Peyronies Disease is "worse".

If your erection is not significantly different, then your placque has not progressed, nor is it covering the entire tunica albuginea. Instead, the quality of your erections may be worse, and when you are soft, your penis is harder. That does not equal more placque or fibrosis!

If in fact things do not appear to be much changed when erect with a proper erection then the problem is getting an erection. Moreover, what your penis feels like soft is NOT a good indicator of what your Peyronies Disease is doing. Given that stress will increase your adrenaline, and that will increase the shrinkage feeling (and hence the hardness feeling when flaccid), then it is entirely possible that depression and anxiety is causing all of your problems currently. given that you have shared with us that you have dealt with such feelings, this is a reasonable explanation for some if not all of your symptoms.

As I said in my PM, I would consider a 5 day break from Pentox, but I wanted to add that you might be at risk of over interpreting the changes you might feel off of pentox and conclude it is bad for you erroneosly.

Tim

[ComeBacKid]

Tim,

After doing my VED tonight and closely examing my penis in the B cylinder, it appears to fill up the same shape, size, and amount as normal.  It appears that my problem is the ability to have erections fill up to the proper size.  Besides this the tunica does feel like it is hardening, and there is a loss of sensetivity that has come in varying degrees by the day. I'm going to stick with the pentox for now, but I may go off L Arginine, and eventually onto the Vasoflow.  There still seems to be some questions regarding L Arginine and if its really good or not for peyronies.  As far as my peyronies, perhaps it is not spreading or worsening, but merely hardening.  It is tough to say, and with no doctors will to do the ultra sound I have no idea if I have calcifications or frank bone in my penis.  

ComeBackid

[PJ]

I just wanted to post and say:

It has been very helpful to me over the past year to have this board to come to. (Yeah, I lurked for a while before becoming a member) The most important thing is that I don't feel like I am the only person with this problem. Without the contact here I would probably feel quite a bit worse and look upon what has happened to me as if it was more 'freakish.' I have tried to get my wife to read the forum, but as far as I know she hasn't yet. I read the forum pretty much every day even if I don't post much. Just having it here is a great help to me. Anyway to those who put the effort in to make this happen: Thank-you

----PJ

[Liam]

Thank you for a kind post.  

Liam

[Christine]

Hi PJ.  

Please continue to encourage your wife to register and check out the Ladies Room.  I am sure that she herself could use some encouragement from some other wifes and partners that are dealing with similar issues as she is.  This is a very hard topic to discuss with just anyone and here we can truly say that we understand.

It's great that you are here and I am glad that you have found a place to get information and support for yourself.  You can now see what a value it is for you and we would like to do the same for her.  If you would like I will give you my home email in a PM that you could pass along to her.

Blessings to you both,

Christine.

[johnnyboy]

Hi everyone,

Some of you may remember me from Nov/Dec when I thought that I might have Peyronies Disease.  I ended up going to the urologist twice and both times he told me he was positive that it's not Peyronies Disease and that it's nothing serious.

Symptoms: When flaccid it feels like there is something semi-hard in the shaft of my penis, at about the middle.  It feels like a band of tissue that is harder than the other.  It isn't rock hard, but it is a bit firmer.  I'm very tall and skinny and I get cold very easily.  When I'm cold my penis looks kind of odd.  The skin kind of wrinkles up in this band area.  When my body is warmed you don't really notice these things.  As for achieving erection: As my penis is filling with blood there is usually some "hourglass" effect, but this eventually goes away and a normal erection forms.  It depends on how hot or cold my body is.  The erection is definitely normal and I don't think I'm losing length or girth.  I'm somewhat self-concious of what my penis looks like sometimes when it is in the semi-erect state.  There is no pain involved or discoloration or swelling (and there never has been in the past).

Doctor's diagnosis:  He seems convinced this is not Peyronies Disease and I tend to side with him.  I don't have the tell-tale symptoms and he is also a Peyronies Disease specialist.  I asked him what he thinks happened and he believes that there was maybe some sort of a tear and blood leaked out into a different part of the penis, and that's what I'm feeling that is harder.  He said it's nothing to worry about as long as there isn't pain or curvature.

What do YOU think?  I can live with this situation if it doesn't get worse.  Erections are normal and there's no pain, and I guess that's what counts.  I am kind of self-conscious about what it looks like otherwise.  Can I cure or alleviate this problem?  Does the doctor's diagnosis make sense?  Can anyone elaborate?  Should I get an ultra-sound?

Thanks in advance.

[ComeBacKid]

JohnnyBoy,

Back when I first got peyronies, my flaccid penis was firmer, but I had lost absolutely no size, and my erections were straight.  Seeing another urologist wouldn't hurt, also getting an ultra sound if you can wouldn't hurt either, I forget the right kind to get (Tim knows).  Constant checking of your penis can lead to false conclusions and just isn't healthy, so you don't want to do that at this point.  I would see another urologist or try to get an ultra sound from the first doctor you saw. I tried to get an ultra sound and no doctor I saw would give me one, except Dr. Mulhall, and he wanted to inject my penis which I will not do, and wanted me to come back to Manhattan( won't be possible for me).  If one can get an ultra sound, this will not hurt your penis so go for it.  Some may tell you to forget about it, but seeing that it is your penis, I'd see another doc just for another opinion, especially if you just have a small copay and good insurance.  Good Luck.

[wasa]

ComeBackid,

I am sorry to hear of your bad news.  

Loss of feeling or sensitivity in the penis is certainly not typical of Peyronies Disease.  I don't think I have ever heard someone connect the two in the tens of thousands of posts I have read.  I know I have never heard of a medically confirmed connection.  Are you sure something else is not going on with your condition?

Actually I have a similar problem. When a curve started to develop I started to have less feeling, especially on the lower (base) & middle part of the penis. While there seems to be nothing visible of Peyronies Disease in my case, not even on ultrasound, i think practically whole my tunica consists of plaques, as it feels very hard. I'm now one month on Acetyl-L-Carnitine, and in the very first 2 weeks i felt a very good response, my penis felt 'warmer' and there was a noticeable improvement in curve. But now already Peyronies Disease seems to have adapted with a vengeance, it's hard all over again (maybe even more), but i especially noticed a very big loss in girth (which is perhaps even worse then loss in length) over one month time, which i didn't have before. I did already experience a loss in length before. I only take about 1000-1500 mg per day, but still, it's not very hopeful. I'm gonna take it for another 2 months but the loss of girth doesn't sound very hopeful.