Brand new here and am near breakdown

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torontomale

I am 39. I had noticed a slight change in shape about 7 months ago. 3 months ago I saw a urologist as I had seen a dramatic decrease in size and some ... numbness ... maybe. For last two months and a bit I have taken Pentoxifyllene 400 mg 3x day. I have been going through a rough rough time with this and just today decided to give Cialis a try and see if there was any improvement. To my horror it is now 20 x worse. Much shorter, much narrower and significantly bent. Please please someone help me

MattFoley

torontomale,

You've definitely come to the right place. The first step to healing is knowledge and the second is to implement a protocol that will, with God's help, get you free of this burden. I'm going to list some questions below. Please answer as best as you can so we can get an idea where you are and what steps would be recommended for you to consider.


1. Beside the Peyronie's, what is your health like?

2. What does your diet look like?

3. Have you had your testosterone and other blood work done yet? If so, what are the numbers of these?

Testosterone Free
Testosterone Total
Thyroid Panels (T3, T4, TSH)
IGF-1
CMP Profile
Lipid Profile
CBC w/Diff profile
PSA
C-Reactive Protein
DHEA-sulfate
LH
Estrogens

4. How much protein in your diet?

5. Do you exercise?

6. Have you talked to a Peyronie's urologist? If so, are you taking Pentox? If so, what daily dosage? Have you talked to your doctor about possibly increasing the Pentox dose to 2,400 mg/day? If not, would you consider talking to him about it?

7. Are you taking any supplements?

8. Are you using a VED? Mechanical stretcher? Are you doing any kind of jelqing? Are you doing things to encourage warmth to your penis?

9. Have you tried topical and/or injectable verapamil? If so, results?

10. What else are you doing right now as per the recommendation of your doctor?

11. Do you have ED? If so, does Cialis and/or Viagra resolve it?

12. Ethnicity?

13. What did your medical doctor conclude? Peyronie's? Venous leakage? ED?

14. How long have you had symptoms? What are your symptoms?

15. What treatments have you tried and what were the results?

16. Do you have insurance or means to get treatment?

17. Where are you in dealing with the psychological aspects of Peyronie's Disease?

18. History Details.


Thank you. The other members here will chime in with their thoughts as well. I know it's not easy right now but please keep a positive frame of mind. The last thing you need is to slip into depression and despair. Hang in there. You're not alone. Don't give up because there is no surrender for us. God bless.
Got Testosterone?

torontomale

Quote from: MattFoley on January 03, 2013, 03:36:00 PM
torontomale,

You've definitely come to the right place. The first step to healing is knowledge and the second is to implement a protocol that will, with God's help, get you free of this burden. I'm going to list some questions below. Please answer as best as you can so we can get an idea where you are and what steps would be recommended for you to consider.


1. Beside the Peyronie's, what is your health like? Diabetic but fit and not overweight

2. What does your diet look like? eat regular meals. Mostly home cooked but have been endulging over the holidays

3. Have you had your testosterone and other blood work done yet? If so, what are the numbers of these? When I saw the urologist he didnt mention any of this, He just gave me teh pills and said these would prevent it from getting worse. He couldnt have been more wrong. I will take this to a clinic tomorrow and ask questions. I am in Canada and although treatment is free it is very difficult to get an appointment
Testosterone Free
Testosterone Total
Thyroid Panels (T3, T4, TSH)
IGF-1
CMP Profile
Lipid Profile
CBC w/Diff profile
PSA
C-Reactive Protein
DHEA-sulfate
LH
Estrogens

4. How much protein in your diet? Lots

5. Do you exercise? I used to go to the gym 5 days per week. Now I go once maybe twice to lift weights

6. Have you talked to a Peyronie's urologist? If so, are you taking Pentox? If so, what daily dosage? Have you talked to your doctor about possibly increasing the Pentox dose to 2,400 mg/day? If not, would you consider talking to him about it? I will talk to anyone who can fix this. I went to a urologist. Not sure if there is such a thing as peyronie urologist here

7. Are you taking any supplements? No

8. Are you using a VED? Mechanical stretcher? Are you doing any kind of jelqing? Are you doing things to encourage warmth to your penis? none. I havent been instructed to do anything but take the pills I mentioned in my first post
9. Have you tried topical and/or injectable verapamil? If so, results? no

10. What else are you doing right now as per the recommendation of your doctor? he recommended pentoxyfylline pills only
11. Do you have ED? If so, does Cialis and/or Viagra resolve it? Cialis and Viagara help. I am affraid mentally I am beyond those working after what I saw today. The effects of this are horrible and I cant bare to look at it

12. Ethnicity? caucasian

13. What did your medical doctor conclude? Peyronie's? Venous leakage? ED? - he sent me to the urologist for diagnosis

14. How long have you had symptoms? What are your symptoms? looking bak maybe 18 months to first pain. But pain went away so I left it. 8-9 months ago I noticed change. 3-4 months ago I noticed significant change. Now I have deformity

15. What treatments have you tried and what were the results? Pentoxyfylline - results are non existent

16. Do you have insurance or means to get treatment? yes
17. Where are you in dealing with the psychological aspects of Peyronie's Disease? this is my first step
18. History Details.


Thank you. The other members here will chime in with their thoughts as well. I know it's not easy right now but please keep a positive frame of mind. The last thing you need is to slip into depression and despair. Hang in there. You're not alone. Don't give up because there is no surrender for us. God bless.

Thank you. I am so frightened and stressed out I dont know what to do with myself

MattFoley

torontomale,

One quick thing: The moderators here are always concerned about server space and quoting large blocks of text eats up a lot of space. Please try to use italics to quote so as to conserve server space. Thanks, bro. :)

I'm going to put your responses in italics.


Diabetic but fit and not overweight

I'm glad that you're fit so it sounds like your diabetes is in check. Although my dad has diabetes, I know very little about it and even less what play it has in Peyronie's so obviously I won't be able to address any possible connection so I'll leave it to one of the other members to speak to it.


eat regular meals. Mostly home cooked but have been endulging over the holidays

Glad to hear you're not indulging in excess amounts of fast food or other unhealthy meals. That helps.


When I saw the urologist he didnt mention any of this, He just gave me teh pills and said these would prevent it from getting worse. He couldnt have been more wrong. I will take this to a clinic tomorrow and ask questions. I am in Canada and although treatment is free it is very difficult to get an appointment

It's important that when you see the doctor that you have a list of questions and print out info off various websites that support your thinking. In my case, I didn't ask the doctor if I should get testosterone enhancement therapy, I told him that I wanted it. Period. I got what I wanted. First, you need to find out what your testosterone level is and then determine whether it's right for you and if not, talk to your doctor about it. Testosterone levels have not been a first-line consideration by doctors in treating Peyronie's. I have no idea why not since it's such an obvious connection. My Peyronie's began shortly after my testosterone dropped. Now, I've reversed the testosterone drop to higher than normal levels and my health is better and my Peyronie's is halted and now seems to be reversing.


4. How much protein in your diet? Lots

Good. I don't have to tell you how important protein is to healing especially when you exercise.


5. Do you exercise? I used to go to the gym 5 days per week. Now I go once maybe twice to lift weights

Please consider getting back to it. Lifting weights is a natural endorphin release and we can use as much as possible. Also, you need to masturbate or have sex at least once a day as long as it's not too painful. Sex and masturbation keep blood flow to the penis and also raises testosterone. Also, exercise increase blood flow all over the body. Don't neglect your lower body work out because that stimulates testosterone more than any other focus.


I went to a urologist. Not sure if there is such a thing as peyronie urologist here

You need a urologist that deals with Peyronie's. You may have to call around or look on the internet. You need to get an ultrasound/x-ray done of your penis so the issue can be identified.


7. Are you taking any supplements? No

Please start. My libido skyrocketed as did my testosterone when I started taking them. Here's a list of my arsenal:

Horny Goat Weed Complex -- 1200 mg
Korean Ginseng Extended Release -- 1000 mg
GPLC Glycine Propionyl L-Carnitine HCl-GlycoCarn 1000 mg PLC per serving
Long Jack PowerMax 200 -- 200 mg
Solaray Damiana Leaves -- 370 mg
Solaray Fenugreek Extract -- 350 mg
Forskolin 50
Maca Extract -- 525 mg
Green Tea Extract - Standardized -- 500 mg
AAKG 3000 L-Arginine Alpha-Ketoglutarate Powder -- 3000 mg per serving
L-Glutamine Powder -- 4,500 mg per serving
ALCAR Acetyl L-Carnitine -- 500-1,000 mg/day
Pycnogenol® -- 100 mg
PABA Caps -- 500 mg
Mega EFA® Omega-3 EPA & DHA Fish Oil -- 2,126 mg per serving
Muira Puama Bark
Grape Seed Extract
Zinc -- 100 mg
Citrulline Malate -- 2000 mg
Vitamin E d-Alpha And Mixed Tocopherols -- 800 IU
Gotu Kola -- 950 mg per serving
Niacinamide (Vitamin B-3) - No Flush Niacin -- 500 mg
Glutamine Powder
Ubiquinol -- 100 mg.
Quercitin
Tribulus Terrestris -- 1,200 mg
D-Aspartic Acid -- 5 g
Vitamin D2


I havent been instructed to do anything but take the pills I mentioned in my first post

Yes, the Pentox is essential. I would talk to the urologist about possibly raising the daily dosage to double. That's what I'm doing right now, taking 2,400 mg/day.


9. Have you tried topical and/or injectable verapamil? If so, results? no

It's something that you should consider discussing with your urologist.


11. Do you have ED? If so, does Cialis and/or Viagra resolve it? Cialis and Viagara help. I am affraid mentally I am beyond those working after what I saw today. The effects of this are horrible and I cant bare to look at it

I understand completely. After you've had a chance to deal with this issue, you need to get yourself straight so you can address the problem and work on a plan of attack. It'll take a minute but you'll get there. Cialis and Viagra are gonna become two of your best friends.


14. How long have you had symptoms? What are your symptoms? looking bak maybe 18 months to first pain. But pain went away so I left it. 8-9 months ago I noticed change. 3-4 months ago I noticed significant change. Now I have deformity

We all wish we had jumped on this earlier but at least now you're taking action so we have to look forward.


15. What treatments have you tried and what were the results? Pentoxyfylline - results are non existent

Pentox takes a while to work. It's not something that works over night but you have to stick with it.


Thank you. I am so frightened and stressed out I dont know what to do with myself

I know. I feel ya, bro. Hang in there. Push forward. This experience will bring out the best and the fighter in you. Let me know if you have any other questions and good luck tomorrow.
Got Testosterone?

LWillisjr

torontomale,

There is a specialist in Toronto. We have several Canadians on the forum and there is a doctor there that has been recommended. I just can't remember the name off the top of my head. If you do some searching I'm sure you can find it here.

You mentioned a deformity. Is this while flaccid or erect? And how would you describe the deformity? Curvature, dent, etc.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

torontomale


The deformity is a sharp bend upwards. Below the glands has completely changed its shape. There is also an alarming loss of girth and length. Do you have any suggestions to kickstart some sort of recovery or to keep this from derteriorationg any further?[/i]

torontomale



Thank you so much. I am not quite sure if by quoting I am using this properly. Seems different than any site I have used before. I have just dragged the mouse over this and used italics, Hope that is correct

You mention masturbation and sustaining blood flow activity. I have been completely out of action for a while due to a very very bad home situation that has been recently resolved. Do you think this has much to do with the rapid deterioration? Do you have any experience with pumps for this or is there anything that I can do to start the healing process immediatly?
 

MattFoley

Thank you so much. I am not quite sure if by quoting I am using this properly. Seems different than any site I have used before. I have just dragged the mouse over this and used italics, Hope that is correct

Just click on "Reply" instead of "Quote". Then, you can highlight the text you want to put in italics and either click on the "I" button up around the left side.


You mention masturbation and sustaining blood flow activity. I have been completely out of action for a while due to a very very bad home situation that has been recently resolved. Do you think this has much to do with the rapid deterioration?

I doubt it but blood flow is important so keep that in mind with whatever you do.


Do you have any experience with pumps for this or is there anything that I can do to start the healing process immediatly?

I don't have that much experience with pumps (VEDs) but others here can chime in on their experience with them. As far as what you can do now, yeah, the stuff that I mentioned in my previous post. There's a lot there that you can get that do not require prescriptions or a doctors evaluation. Heck, I even play with myself all day long to encourage blood flow. If you have a woman that would do the job for you, I highly encourage it. :)

Let me know how else I can help. God bless.
Got Testosterone?

torontomale

Thanks very much.

I will start collecting resumes

richard wheeler

Hi there, I am from Toronto as well . I completely understand your anguish with what is happening. I have been dealing with this for approx 18 months and it can test you mentally for sure . I have been on the oral meds and although there may be a marginal improvement in my condition as far as the curve goes , the oral meds have vastly improved blood flow and overall health of my guy.As you will read, there is an acute stage and then a stabilization of things. Myself, i hit the stabilization phase around 12 months.I am not satisfied with things but now have been exploring surgery and have been keeping an eye on Xiaflex. My Uro is Dr Ethan Grober at Mount Sinai. he is a great doctor but preaches patience to ensure things have stabilized before moving forward. I know another member (Mike 67) has the same doctor and had surgery last Feb and is very happy with how things turned out. You should probably read his history. Things are far from hopeless , but education and patience and knowing you have options will hopefully help you feel  better. Stay positive , it helps. Rick
newbie

torontomale

great to meet a fellow Torontonian. Did it take long to get in and see Dr Grober?

Did you have much loss of length and girth? Did the pills improve that?

Jesus I need soime help. I dont even know how to tell when things have stabilized. It seems to be getting worse really really fast

richard wheeler

Hi there, i first had to see my gp and told her i wanted to see Dr Grober. She sent in the referral and i cant quite remember how long it took to see him , i would say it was within a month. I would see your gp , and do what you can to have your doctor fast track you in there if you feel it urgent. Myself, i would say i have lost a little length ,but have definite narrowing on one side where the curve is with an indentation. It is being constricted by the the plaque. Getting on the oral meds of pentox, l'arginine, ubiqinol and low dose cialis has created really good blood flow and vastly improved my penile health. Dr Grober is a great doctor , so you need to see  asap. There is help and options for you . This forum has been a blessing to many of us to educate and help one another thru this . keep me posted . Rick  
newbie

torontomale

Have an appointment to see dr Grober. 8 months from now.

No sign of improvement on pentox. Bought VED device at recommendation of forum member but after a couple fo tries cant get anywhere near an erection and hurts near the base.

Anyone on here tjhought of phalloplasty? Looking to get length and girth back and have little hope in anything else working

Hawk

Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

MattFoley

I'm guessing since he's in Canada, the wait is long?

Got Testosterone?

richard wheeler

I am surprised it is that long(8 months). I would politely ask to be put on a cancellation list.How did you get get on pentox? from your gp? With me ,my first symptoms showed up in mid June of 2011. I first ignored it , then found this site, went to see my GP for a referral and i know for a fact i initially seen him in November. Not even close to 8 months from the time of the referral. I am glad your you are taking the pentox and hopefully the rest of the suggested supplements. Dr Grober ,from my experience(and his) will preach patience to get thru the acute stage.I am at approx 20 Months and my condition has certainly changed. The meds have certainly helped my penile health. Physically , i started with an indendation approx half way up and then a bend of approx 45 degrees developed.. Mentally , there is no doubt it has been tough at times .But thru this site and Dr Grober preaching patience and assuring me things will work out, i began to relax and be hopeful.Physically ,presently i have lost the indentation . My curve to the left has gone from approx 45 degrees to around 30 ,but i have developed a curve upward of approx 30 degress and it has stabilized there. I saw the Doctor last month again and he now knows things have stabilized and offered to do a nesbitt procedure which i am considering as well as keeping an eye on Xiaflex.  I guess what i am saying is be religious with your meds and be patient. Things will work out.    
newbie

torontomale

Yes I am in Canada and I am a bit frustrated by the 8 months. I will call the dr's office tomorrow and see what cancellation list looks like.

I had a urologist in Toronto get me on Pentox 4 months ago and went back after a 3 month check in. When I told hom that it was getting far worse he said there is nothing we can do except see a surgeon. Thats how I am now hooked up with DR Grober.

I member of this forum got me hooked up with a referal for a VED. It was expensive but came yesterday. I tried it flaccid and it was useless. When I tried it erect it gave me hope. The vacuum was able to get size and shape back albeit tempraily while the device was in use.

Has anyone on here heard of someone getting back to normal? Size, shape etc.

LWillisjr

Old Man on the forum here can help you with proper use of the VED. Sounds to me then you didn't have a good seal between your skin and the VED when your were flaccid. The VED will work when used properly.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

0x5555

Quote from: richard wheeler on February 18, 2013, 02:51:41 PM
Dr Grober ,from my experience(and his) will preach patience to get thru the acute stage.
Quote shortened by Administrator Per forum rules

Richard, do you have pain at all?  Dr. Grober also preached patience for me.  I was in a significant amount of pain that continues to this day.  

james1947

0x5555

Not connected to the subject, please be kind and do not quote entire posts. It is not necessary to understand your post.
You can modify your post by pushing the "MODIFY" button.

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

richard wheeler

I would say that i did have a dull ache on most days. Presentlly i would say i will feel it on occasion but generally i have no to very minor discomfort .Not sure if its the meds or that i am probably past the acute phase  
newbie

torontomale

What is the first visit like at this urologist? Has he given you any instructions I could get a jump start on?

You had mentioned the indentation had recessed and the health had returned. What do you mean healthy? solid bloodflow and strong erections?

For me it seems like there are blockages (for lack of a more accurate or better discription) preventing me from filling up with blood as I used to.  

Hawk

As for what you could get a jumpstart on, you need to read this document.  I am sure it will answer those questions. MUST READ BEFORE YOU POST - Information for new members - Peyronies Society Forums

Hawk
PS: torontomale, also, this introduction topic is over twenty posts.  You will get more information if you leave this introduction board and go to the main forum to post questions and comments in the appropriate area.

Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

richard wheeler

hi there, i would say say being on the pentox and other supplments have definitely helped with my penile health and erections.At the beginning of this part of the erectile problem was probably mental as well. Panicked , feeling sorry for myself etc. The indent is definitely gone or hardly noticeable.Just need to get this puppy straightened and am going to make that decision .As for getting a jump start on things for the doctor, i would get on the meds,let him know what and how long you have been doing things.I also took pictures with my phone to show him.  ou might want to take one currently and then another just before you see  him to see if there are changes going on . there were with me. Things will work out , hang in there.Rick
newbie

torontomale

Hello

I was on here a few years ago when Peyronies Disease started up and after a year of seeing the Urologist and taking Pentox things settled down. Things were not great but could have been worse. I lost an inch in length and some girth for sure but the bend was not significant.

Fast forward the clock and after not taing pentox for 6 months all hell broke loose. I have been back on for 4 months but its not helping. I now have a significant upward bend. Last month it even appears to be going sideways. Even more shortening and I am lost.

Because I live in Canada, Xiaflex is unavailable. Currently taking Pentox, Ubiquitol, L'Argenine, Alcar and am supposed to be taking a small Viagra dose daily but that isnt cheap up here and I dont always have.

Has anyone else seen a huge flare up after a couple of years? This is almost intolerable. I am just miserable all of the time and need to find something useful


james1947

torontomale

Merged your two topics and moved the merged topic to here.
The reasons are:
* We are locking introductory topics after maximum 10 posts
* Everyone gets one topic in the introductory board
* You will have continuity of your story/problems/treatments on this board.


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

emasculated

torontomale, I'm sorry for what you're going through. Your case sounds extreme for a relatively young age of 42.
Do you have besides Diabetes any other possible reasons for this? Have you have taken Propecia or other pharmaceuticals which may have contributed to the problem?  
"Without health life is not life; it is only a state of languor and suffering - an image of death."

torontomale

yes actually. Both. I am diabetic and have been taking propecia for ten years or so.

How would those cause new plaque to form?