Finally got all the meds. Not sure what next.

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Glassglue

After getting shot down by the first wait-and-see uro I managed to get the cialis and pentox from my general practitioner yesterday. As they put it, why not it's not as if it's a controlled substance. They also did their research and recommended using a traction device now which I guess I will have to look into. I still need a good urologist I'm guessing especially considering how quickly this is progressing and I have appointments made with many who I'd hoped would prescribe the pentox. I have to go through the list and prune it down to one or two.

I'm thinking that urology of Virginia although it is 4.5 hrs away will make that list. Maybe also the dr Bevilacqua at Johns Hopkins wh may be looking at experimental treatments. Don't know yet.

Meanwhile I have burning pain all the time in the tip of the penis that feels like a uti and makes me feel like I have to urinate.  However urination itself seems difficult and I suspect the urethra may be swollen. The pain keeps me up all night and last night the cialis seemed to make me get erect every 30 minutes or so. My erections have changed from having a pain that feels like something being stretched to a dull hard feeling like my penis is trapped in a brick cage. I imagine that being from the plaques getting harder and more extensive. I hate it beyond words and each erection made me want to die. I seem to be developing a bit of an hourglass deformity and a downward curve that may exceed the 12 degree leftward curve I was already aware of. I do not know how I am going to live like this.  

Skjaldborg

Quote from: Glassglue on April 16, 2015, 08:56:12 AM
I imagine that being from the plaques getting harder and more extensive.

Not necessarily. The pain and resistance during the acute phase of Peyronie's is mostly due to the inflammation of the tunica. It does not stretch well when inflamed and sore, just like any other injury. Almost my entire penis felt sore and shrunken during the acute phase and now, after Pentox for 8 months and 6 years of healing, I only have a couple small indentations and I've got most of my size back.

The acute phase, which you are in, is going to pass. It's impossible to say what kind of improvements you might see, but understand that this phase is not permanent. Getting on pentox and cialis is a HUGE step forward and is going to pay dividends in the coming months.

Take the meds, eat right, exercise and keep getting morning erections. You're going to be OK.

-Skjlad

Glassglue

Thank you skjlad. Just hearing you say I would be ok helped.

The pain was better yesterday and last night and I like to think it was because of the drugs. I intentionally maintained an erection for a long time this morning thinking it would be a good thing as it is a sort of stretching in itself, and was able to look at it and it isn't quite as mishapen as I imagine when my mind is left to itself. At least not yet.

Two questions for anyone:

Is it good to further manipulate it when erect and stretched by gently bending back toward straight? It would seem the ideal opportunity to put pressure on the plaques which seems by consensus as a good thing when done via a traction device when soft (which I'm also looking into).

With all the talk about inflammation there is little mention of anti-inflammatory drugs other than some mention of steroid injections. It would seem that perhaps NSAIDs could be useful, or maybe even a dose-pack of prednisone to halt the inflammatory cycle. No?

lonelyboy

Quote from: Glassglue on April 17, 2015, 11:15:31 AM

With all the talk about inflammation there is little mention of anti-inflammatory drugs other than some mention of steroid injections. It would seem that perhaps NSAIDs could be useful, or maybe even a dose-pack of prednisone to halt the inflammatory cycle. No?

I have doubts whether the prednisone would help much, and probably cause more issues than fix, I've been on prednisolone for several years and am attempting to get off it, I think its too broad an immunosuppressive to be used for anything other than quickly stopping something in its tracks, it hasn't stopped my inflammation.

HTH

Glassglue

Yeah I'm sure you are right and it's more complicated than that.

I got test results back from an exam where we are trying to determine where my Raynaud's is coming from and one of them was for inflammation markers. It said I had no active inflammation in my body. Yet my penis still has burning pain.  However I wonder if that means the active phase is over already.  I feel like I know nothing about what is going on.  Oh yeah, my testosterone was in normal range also.

I think I will keep my appt this Friday with the uro who doesn't prescribe meds but instead advocates massages and exercises. Maybe it will be interesting.  

Glassglue

The appt with dr Stanford went well I think. He was an excellent listener and quite reassuring in manner.

He does indeed advocate applying gentle straightening force during erection as a moderately effective means of stretching the scar tissue. Makes sense to me. He also is a fan of vacuum devices. I'm on the fence between those and ptt.  

The pain in my penis has been unbearable this week especially at night and I haven't slept much. He diagnosed prostatitis however in addition to the Peyronie's.  I am a believer as when he did his exam and touched the prostate the tip of my penis lit up like a blow torch with pain. I don't know how or why that has correlated with the Peyronie's or why it didn't show up in inflammatory markers. On an antibiotic and rapaflo for two weeks.

He doesn't advocate the pentox/cialis/etc routine but I got that already.  

james1947

Glassglue

It is good that you are fine with the doctor, but:
QuoteHe doesn't advocate the pentox/cialis/etc routine
Is contradiction with most of the leading urologists in Peyronies and also most of the young generation doctors.

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

Glassglue

Quote deleted by moderator - James
Please read the forum rules.


Yes and I knew that going into the appointment.  But I'd already gotten the meds from my primary care physician and I needed someone who could help with the more immediate problem of this pain that was making it impossible to sleep. I also wanted to see what the stretching and massage he was promoting was about.

That is also possibly the strongest statement of support for that 'cocktail' I've yet seen. Is it really that accepted without as far as I've heard any well designed studies supporting its effectiveness?



james1947

Glassglue

Regarding your sentence on the "cocktail":
1. No one is telling you to take it if you don't think is worth or you have any other reason not to take it.
2. If you will invest more time reading the forum, including the library, you will find out that your sentence is far from truth.

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

Glassglue

Ok. It was not my intention to annoy anyone or step on anyone's toes, and I really have no intention of debating the efficacy of the various drug treatments available. I am, as the title of the thread suggests and the initial post states, in fact taking the "PAV" cocktail, and have also read all of the studies referenced in the "survival guide". Having reviewed them to be certain, none are controlled, randomized definitive studies, but I may have missed some. However I have nothing to lose except my penile deformity so why not.

If you would prefer I, or you, can simply delete this thread.  

LWillisjr

We respect everyone's opinions and don't just delete threads. And I don't see it a s debate. Simply saying that most of the leading urologists who treat Peyronies recommend it the cocktail. But also recommend it along with other therapies like traction and/or VED usage, VI's, Xiaflex, etc.

There haven't been enough individual studies to determine the efficacy of any of these individually.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Glassglue

Thank you Les. Those statements all seem reasonable and match my impressions as well.

I understand I am about as irritable as a person can get right now due to the pain and anxiety of this situation. And I try to keep in mind that everyone in this miserable place is in a similar situation.

The prostatitis is not resolving yet after a week on antibiotics and I have no idea why I should have that in conjunction with the Peyronie's outbreak.

And I'm going away to a resort this weekend to celebrate our one year wedding anniversary. Doesn't get much better eh.  

Glassglue

Well after two weeks of antibiotics the pain in the tip of my penis has improved but not resolved completely. Some days it's almost normal and others I can't get through an hour meeting without leaving twice to pee, and get up 6-7 times at night. The urologist gave me something for overactive bladder but I don't think that's right.

And furthermore, when I reported my testosterone as "normal" earlier it was from the phone convo with the dr who ordered the tests. When I saw results however it was 275 with a supposed normal range of 250-1100 so it was just barely in. I pointed this out to the uro who had not ordered the tests but had seen the results and he said test it again. It came back even lower at 225. So he has now given me a month of testosterone supplement.

About 8 months ago after I had been diagnosed as diabetic and subsequently lost a bunch of weight really fast the three things I noticed were the onset of Raynaud's phenomenon, the first tiny nodule in my penis which would later turn out to be Peyronie's, and a major drop in my sex drive which could have been related to a drop in test. Two years earlier I had noticed the onset of a fatigue that never really went away.  Correlation doesn't equal cause and effect but I am looking for some kind of root cause for all these issues.

Generally I feel like I am rooting around in the dark. But in regards to the Peyronie's I am taking every medication and supplement thought to possibly help, now including testosterone.  I don't think there is anything else I can do other than the VED routine which will probably happen soon. So I suppose it's time to start being patient and waiting. Xiaflex is an option I am holding out for if nothing gets better.  It would be good to get the discomfort and urination problems under control though.  

james1947

Glassglue

A few remarks:
* Testosterone levels are connected to sexual drive, also to chronic fatigue. You should be in the upper side of the range.
* Some on this forum are convinced that low Testosterone levels triggered they Peyronies.
* You have stated: I don't think there is anything else I can do other than the VED. Why? you can think about Pentox, Cialis, Ubiquinol also.
* Regarding urination problems, I had exactly what you are detailing. Your case may be different than mine, but mine was solved by cutting out a part of the prostate around the urethrae. It was after trying out during more than 8 years many things with no help or temporary slight help. I can urinate now like an 18 year old :) and use the toilet ones in a few hours, not every 20 minutes or so.

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

Thisismyusername

Glassglue,

Prostatitis is a BS diagnosis made by urologists.  Reading your first post I knew you would be diagnosed with it because of your symptoms, but there isn't much evidence that those symptoms are actually caused by inflammation of the prostate, and even in the case when it is, antibiotics are only worth taking if the inflammation is caused by bacteria.  I'm guessing, as usual, the urologist did not do any tests to confirm a bacterial infection.  

I did not have pain in the tip of my penis but I did have pain in the perineum and testicles and shaft of penis when diagnosed with peyronies.  I also had to pee frequently (ever hour or so).  Like you, the urologist pushed on my prostate which caused great pain in the tip of my penis (although I never had this before or after).  

Here's the thing about prostatitis - different people have different symptoms and they are all lumped under the diagnosis "prostatitis" - essentially the prostate is the scapegoat of urology.  Many people who have "prostatitis" symptoms actually have a muscle tension problem - their pelvic muscles are chronically tense.  This can cause pain in the genital region because the nerves that reach the genitals pass through the pelvic area and can become squeezed.  It also causes frequent urination and difficulty urinating because in order to urinate the pelvic muscles must relax.  

In my case I was able to find out that muscle tension was indeed the cause of my "prostatitis" symptoms.  I took a course of antibiotics anyway but it did not help.  I'm not saying for sure that muscle tension is the cause of your symptoms, but it very may well be.  If that is indeed true, then you can resolve your symptoms by learning to relax your pelvic muscles.

Reading the forum you will see many people diagnosed with peyronie's that also have these symptoms.  If they are caused by a bacterial infection then why would they be associated with peyronie's?  A better theory is that inflammation and pain in the penis from trauma cause a natural tensing of the muscles near the genitals (the pelvic area).  Because the pain and inflammation last for a while, the muscles are prone to stay tense for too long, eventually causing pain.  Moreover, the stress of having peyronie's makes one more prone to tension than they usually would, which exacerbates things even more.  It really makes a lot of sense.  It took me a while to figure this out for myself.  Like you I thought that maybe my urethra had been damaged, since that made more sense than a bacterial infection.  But now I know that my symptoms are caused by muscle tension.

In your case it is probably early enough that your symptoms will disappear by relaxing mentally and physically.  If they remain then you might want to consider reading "a headache in the pelvis" by dr wise and consider seeing a pelvic physical therapist.  This helped me a lot.  But I don't see any reason to believe that your symptoms will get as bad as mine.  

Anyways, I hope this alternate perspective helps.  To repeat I'm not saying this is definitely your problem, but it's a possibility.  

Glassglue

Thanks to both of you for the very helpful replies!

James - I am in fact taking the pentox, cialis, ubiquinol, arginine, and acetyl l carnitine. And now testosterone. So I think those bases are covered. I get morning wood now for at least an hour each day which I'm speculating may be as good as VED. I probably will post in that section of the forum with more specific questions.

Username - thank you for that perspective and experience. I agree with all of your points regarding prostatitis. So much of what has happened doesn't make sense. This uro likes to throw things against the wall to see what sticks, but at least he is willing to try things. The other two I saw were complete assholes (or perhaps complete dicks would be more appropriate since they aren't proctologists). I take everything any doctor says with a whole shaker full of salt and understand that I am ultimately responsible for my health. Trying different things and testing different theories gives me data to hopefully let me understand what is happening.

My condition is slowly improving and your explanation about tension is as good as any I've heard. I have been under enormous stress the past two years due to medical conditions and anger over doctors screw ups which has taken an amazing toll on my health, so it wouldn't be surprising to have this also be a result.

Thanks to this forum I am relaxing a little about the Peyronie's. When it first hit all I saw was unknown causes and no known cure and a tiny natural emission rate. Now it seems that there are actually things I can do and there is a reasonable expectation that I could significantly improve things. I also had to of course absorb yet another blow to my ego by having my penis become just another science project instead of the reliable symbol of my masculinity it had always been.  

james1947

Glassglue

I see you are doing really everything you can to fight this disease. :)
Hope it will help you to get back to the situation before the Peyronies and even better.
Regarding the frequent urination, my urologist made an ultrasound that showed  clearly that the prostate, even not enlarged at all, is closing the urethrae.
Maybe you should make a test also.

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

Glassglue

Yes I will do anything it takes to get my penis back the way it was. Sigh.

To boil down what I don't understand right now is how the apparent prostate, penile pain, and Peyronie's are all connected. They all began at roughly the same time I guess and I'd never had trouble with any of them before. I am stumped.

Another potential wrinkle is low back problems which I understand can cause prostate issues. I have a chronic L5-S1 problem that i have managed well and has been quiet for years. But due to my other recent health issues I've been compelled to begin riding a bike again for fitness and now the past couple weeks I'm having back pain again. So if that could affect the prostate, which could cause the penile pain, how could that affect or cause the Peyronie's?

There is too much going on to sort it out.

james1947

You are not alone in what you are describing Glassglue.
Prostate problems is because we are living longer. As one of my doctors told me, everyone by 90 will have prostate problems.  :) Some of us much earlier. :(
Having back problems for many year, right now also just slowly improving pain in my leg that is a result of the backbone pushing a nerve. I am using a large elastic belt for a few hours a day, helping with the back pain that I have also.
From my experience, the only thing that one can do to stay in good physical condition with back problems is walking. Fast walking, 6 km per hour, 3 times a week. Can't do that right now because of the leg pain, hope will be able to do it shortly.
How Peyronies connecting to all that, I think nobody have the answer.

James

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

Glassglue

Well despite taking everything known to man to help, the pain is increasing. Last night instead of just the tip burning the entire shaft was aching and burning. I don't think that is related to my back. After lying there for a couple hours with it I finally got up and took a couple Percocet for the first time for this.  A bad precedent because I was honestly looking for the narcotic release from worry as much as pain relief.

I'm waiting for delivery of my VED but after last night I'm not sure I can imagine using it for fear of further pissing off the damned thing.  

Thisismyusername

I will suggest again that you see a pelvic pain physical therapist.  It's safe and there is a good chance it will help.  The therapist will be able to assess your muscles to see if they are tense or not.  If they aren't then at least you can rule that out (assuming you saw a good therapist).  I do not recommend meds to deal with this.  They tend to only have very limited effectiveness and bad side effects.  

Glassglue

I am working on some exercises to relax that area. I seem to be better today and last night but it varies a lot day to day anyway. In general the pain and constant need to urinate are making me crazy. Bad nights I get up every hour. Uro has tried the antibiotic for prostatitis and now something for overactive bladder that isn't helping either. I need a break from the pain and anxiety. This is consuming my life.

I did try the VED for the first time last night but failed because my dick got hard as soon as I put it in the tube and wouldn't go down. I get erections a lot now but they are kinda weird. I'm afraid they aren't as hard, and there is little to no sexual desire associated. It's like a zombie dick. God what is happening to me.  

Thisismyusername

I think you'll have a lot better luck seeing a physical therapist than just trying exercises on your own.  But I'll leave you alone about that now, it's your call what to do.  

Glassglue

Saw the urologist again yesterday. He also mentioned a physical therapist for the first time. The pain waxes and wanes but generally seems to be improving and the urination frequency decreasing overall. But again have good days and bad days. I'm not a big fan of physical therapy as they seem expensive for what little they do. Is there someplace I could get instructions on what sort of exercises might help?

My testosterone levels have improved only a little with the topical I've been using (axiron) so I am switching to injectable. He also mentioned for the first time the low test level as a possible root cause for the multiple issues I'm having.

I'm using the VED daily altho my dick gets hard after the first couple pumps and stays hard after that. I continue regardless being careful not to cause pain or even discomfort and so far I seem to have at least done no harm.

The uro is insistent that the burning I get is not related to the peyronies. I have no idea of he is right or not but the deformity and plaque formation seems to have stabilized (I think. I hope.) with no perceptible change in over a month. I finally was "convinced" to have penetrative sex last weekend and it was more difficult emotionally than physically. It was a little different as the head points down slightly now rather than up and the distal end seemed slightly less firm. But other than needing longer than usual to come it went ok and I'm grateful for that. The urethra seems sore for a while after ejaculating but it's not too bad.  

Thisismyusername

Whether it's expensive or not depends on your insurance.  For me seeing the urologist is $80 (a complete waste of money since they don't help) and seeing a physical therapist is $25.  The physical therapist actually helps, although it took many many appointments to make a difference (maybe 3 months of weekly appointments), so in the end it is expensive for me when you add it all up.  But for me it was completely worth it.  Getting better is not really about doing exercises, it's more about learning to relax.  You might try reading a book called "A headache in the pelvis" which talks about the philosophy behind this.  The book is ok but it's really repetitive and over-advertises the author's protocol specifically, so that part is annoying but you can just ignore that.  For me seeing the physical therapist is where I really came to an awareness of the tension though.  

Anyways, I'm just one opinion.  Maybe other people have more suggestions.

Glassglue

I'm sorry this is becoming a progression thread and is probably in the wrong location. I need to share and vent sometimes tho.

I'm doing ok mostly. The struggle is more mental than physical. The pain and urinary issues generally continues to subside I think and I can typically go the night without pain killers and only get up twice to pee.  I know it hasn't stabilized yet and could change and go any direction any time.

I've had sex twice now and that is the real challenge. I can do it but the mental trauma is significant. It feels different. The distal end isn't as hard. The shape isn't the same. It doesn't feel as good. When we are done I just lie there and want to cry.  Felatio was attempted and although that  is one of my greatest pleasures in life  I nearly freaked at the thought of that nasty lumpy bent and misshapen thing inside someone's mouth. It had to be stopped right now. So anyway I generally am ok, but only as long as we don't have sex. Unfortunately or fortunately depending on my mood I know that even if this doesn't progress further physically, which is of course far from certain and a whole other area of anxiety, I will probably have the rest of my life to "get over" my issues and accept my new realities.

We are currently in Hawaii for a week on a trip I was surprised with for our first wedding anniversary. I am getting as much support as possible. I know, doesn't sound too bad yeah? It's not. What sucks is that I feel compelled to spend parts of it writing in this forum. Life is never perfect, except in our memories if we are lucky and I wonder how I will remember this. As the beginning of the end of my sex life or as something I eventually got through?

Glassglue

Getting packed up to head home from Hawaii and feeling in a very very weird place in my head. I just want to start everything over and make a clean break with my past. Something more in line with my current situation and capabilities.

It feels like my peyronies has progressed this week. Erections feel tight and painful again and the "ventral flattening" as my uro described it that is the primary feature of my deformity is worse. The scar tissue runs all through my penis in various locations giving no real target for a xiaflex injection if I wanted to go that way, which I don't. If I don't achieve a near miraculous general remission due to the Mother Mary, all the pills I'm taking, or the delightful VED device then I'm not getting anything. Interestingly my dick doesn't really look all that bad. But touching it tells a different story. It is bent like a bow with the tip down and is flattened with the underside hollow and uninflated but sort of stretched across the bow.

Edited out some way too detailed info posted after a couple drinks as I was getting packed to leave. Sorry folks.  

Glassglue

Realized it's been three months now since posting this thread and beginning meds, and another two months since beginning daily VED treatment. After all the stress and effort my dick looks no better today than it did then. I have another months pentox but I will probably not bother to ask for another prescription after that. I have cialis for about six more months so I'll keep up with that just because and with the VED too although if there hasn't been at least some improvement in a couple more months I'll probably stop that also.

Whoever here said something along the lines of by all means do everything you can to stop/fix this thing but in the meantime start getting used to your new penis probably was speaking for the majority of people here.  

james1947

Glassglue

I don't know your age (not stated in your profile), but you need to be patient for results with this treatment.
Two months on Pentox and you are expecting results.
Most people had results after 6 to 12 months.
But of course it's up to you, is your penis.

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