Suggestions or Requests for additional Polls

[Hawk]

If you have suggestions for new polls  post them here.  These can relate to  symptoms, treatment, progression, attitudes, psychological aspects, or any other Peyronies Disease related topic.

[phil]

I would like to suggest a poll to see how many of us have had a prostate infection prior to, or concurrently with the development of Peyronies Disease.  And, how many of us had a cystoscope exam for the infection?

[Hawk]

Phil,

Write it up exactly how you want it and together we will fine tune it if need be.  I have learned how tricky polls can be.  I would like to take a course on designing polls.  

We have to state who is to participate in the poll. (Everyone or only those with a certain history)

We have to make sure the question can only be read one way,
Our choices cover all possible answers
Each choice must exclude any other choices.

[phil]

Let's try it again:

All men with Peyronies Disease -  

Have you ever had a prostate infection? If so, was it prior to development of Peyronies Disease, concurrent  with the development of Peyronies Disease, or after development of Peyronies Disease? ? If prior to Peyronies Disease, how long prior to development of Peyronies Disease? less than 6 mo., 6mo to 1 yr, 1 yr to 2 yr, greater than 2 yr.

If you had a prostate infection concurrently or after developing Peyronies Disease, did you receive treatment for the infection, and if so, did the treatment help.  Did the treatment in any way affect your Peyronies Disease?

[Hawk]

Phil, I apologize, but you begin to see the problem with designing a poll.  Polls can only have one premise and must have a choice that covers every possible answer to that one premise.  Your Post has 8 questions embedded in it and only 4 answers and they are all assigned to 1 of the 6 questions.  If the premise of a poll is a question, all the responses must be statements.  If the premise is a statement, all the responses must be questions.  Don't feel bad, I have worked with other members for many PMs for many days before posting a poll and then realized it still had design flaws.

I will think about cooking this down. but this might work better to post under "Causes of Peyronies Disease" so members can respond in discussion form.



Have you ever had a prostate infection? (question) (All responses to this must be statements) (yes or no)
If so, was it prior to development of Peyronies Disease?,
was it concurrent with the development of Peyronies Disease?
was it after development of Peyronies Disease?

If prior to Peyronies Disease, how long prior to development of Peyronies Disease? (workable with some fine tuning)
     less than 6 mo.
     6mo to 1 yr
     1 yr to 2 yr
     greater than 2 yr

If you had a prostate infection concurrently or after developing Peyronies Disease, did you receive treatment for the infection? (yes or no)

did the treatment help?  (yes or no)

Did the treatment in any way affect your Peyronies Disease?  (yes or no)

[Steve]

I was discussing this forum with my Uro, and he asked me a question "How many guys on VI have seen improvement?".  I thought about this for a while, but could only think of people who've had no success.  So, I was thinking of a poll:

For Men who've been treated with VI:

A) Did you:
   1. Greatly Improve
   2. Slightly Improve
   3. No Change
   4. Slightly Worsen
   5. Greatly Worsen

B) How Many Injections did you have/
   1. 1-3
   2. 4-6
   3. 7-9
   4. 10-12
   5. More than 12

C) What concentration Verapamil?
   1. 5 mg.
   2. 10 mg.
   3. 15 mg.
   4. 20 mg.
   5. other (please post)

[Hawk]

Steve,

I think the  idea you and your Uro came up with for a survey is a very good one I highly commend you for discussing the the Peyronies Disease Society with your doctor.  That is exactly the kind of support we need in this battle.  If every member did the same and gave their Uro the the address of http:www.PeyroniesSociety.org, we would have several urologists on our website and forum right now.  Some would give insight, some would only lurk and get a much better feel for the issues that patients face.  I already know of one members whose Uro is very interested and said they wanted to register.

There is one problem with the poll, but i think I think I can work past it.  The forum poll feature only allows one question of limited length and several choices to that one question.  I think I can set that survey up on our website however.  If I do, I think I will set it up as a blind page (with no visible links from the website).  Instead, I would link to it from a members visible" only area of the forum. These surveys that others have done on web sites concern me because anyone can fill them out multiple times or any kid or vandal can find the site and mess with the numbers.  In a survey with limited participation, it only takes a couple loaded entries to make the survey meaningless by screwing up the entire results.  Accordingly I will link off of a forum area accessible only to forum members.  We may then run it again publicly and compare the results.

[Steve]

Thanks Hawk, I try to keep my Uro 'up to date' with the latest from the forum.

An extension of my original poll suggestion it to produce similar polls for TV and Ionto application of Verapamil -- or would this be overkill?

[Hawk]

Steve,

I am already 85% done with the survey. I added a section defining improvement or worsening as change in or erection or deformity (bend curve, indentation, hour glass, length or girth).  I did not want someone defining pain improvement as improvement since it almost always resolves.

I also put an area to let them check what form and change was in (erection, curve size etc)  I will give you first look at the survey when it is done.

I agree, Our website is a powerful tool for many such surveys to keep members, urologists, and the Peyronies Disease community informed.

Like all our successes, it depends on the members.

[ComeBacKid]

Hawk,

*We should definately do a survey on Topical Verapamil from PDLabs to accompany the PDLabs report, perhaps we could incorporate into that generic verapamil as well.

*We should do a poll on Acetyl L Carnitine as well and results users have seen from it.

*We should also do a poll on Vitamin E and results users have seen from it.

ComeBackid

[Liam]

Hawk, what do you think about this as a survey?  


Have you been diagnosed with any of the following?  You may indicate more than one.

a) Acute prostatitis

b) Chronic prostatitis

c) Benign prostatic hyperplasia

d) Prostate Cancer

e) Other prostate related condition    
   Explain

f) None of the above  

If you indicate (f) you may stop here.



What, if any, medications have you taken for the above?  What was the dosage?  How long did you take it?





In relationship to developing Peyronies Disease, did your prostate condition happened

a) well before

b) before

c) same time

d) after

e) well after



Comment

[ComeBacKid]

The more and more people I talke to it seems like we have quite a few fellows on here using some kind of VED, and the most popular one being the Soma Correct.  A poll on this down the road could be useful to evaulate the effectiveness and the efficacy of the treatment.  

[Hawk]

Clearly we will do a VED web survey since it is too complex to cover with a one question forum poll.  Thanks for the input

[ComeBacKid]

Steve,

Yes it seems only legit to do a poll on the VED, 3 people have told me they saw results from the use of the Soma Correct and Angus seen results with his homade pump.  Including myself there are about 4 of us currently on the 26 week protocol for the Soma Correct, and about 2 others on a different VED.  So about 10 people in total, not exactly scientific but good enough to gather some of our own data on these things.

I second what Hawk said in keeping some measurements and data to give to future users.  Preferably a length, girth, and curve mesusrement before starting the VED, halfway, and when done, thats how I'm doing it, but more frequent measurements can't hurt.  Important to just keep some kind of data on this.

ComeBackid

[ComeBacKid]

I have talked to another fellow using a VED, pushing us up to at least 11 people who have or are in the process of using some kind of VED, with the most popular being the soma correct.  Maybe someone other than hawk (since he has a lot to do already) can take the lead on this and put together a VED poll which we can all edit and add our comments, and we can get one up soon with the TV poll.

ComeBackid

[ComeBacKid]

I think we also need to do a pentox poll or a pentox/ larginine/ viagra poll, perhaps just combined in some way, seems like more and more people are doing at least pentox, if not the full protocol from Dr. Levine, seems appropriate, as does the VED poll as well.  The thing is though can we leave these polls open, past polls have been closed and new members can't participate anymore, oh come to think of it, do you have an update on the topical verapamil poll?  I think we should place our poll information on the fading screen when you log in where it announces the womens only forum and also states that peoples PM boxes are to full(wow that has been up for awhile you'd think people would clean out their inboxes and take a HINT!)  

[ComeBacKid]

I keep logging in and seeing many new members, this is good.  I think it could be beneficial to have a poll on how members heard about our forum, maybe we can see in what arena we are weak in recruiting and focus there more.  I was thinking we could have a standard welcome PM with a link to this one or two question survey.  Is there anyway you can program this to be done automatically hawk?

ComeBackid

[Hawk]

ComeBackid,

Thanks for the idea.

A pm with a link to a poll is pretty easy to do.  Automating the pm is a bit harder.  I used to send a personal pm to every new member welcoming them to the forum, explaining the forum, and asking how they found us,  but within the last 6 weeks stopped due to time constraints.  I have spent a little time trying to automate a pm but with forum upgrades, I am busy just trying to restore code changes such as our banner, web button, and making the ladies room visible.  

It is a good idea however and I will put it on the list.  My personal life is also ramping up to require more time.

[gramps]

Hi,

I have not been a frequent poster, but am a regular reader. I am also a Master Degree RN/Family Nurse Practitioner that is working toward a doctorate. I have noticed, in several PMs from various men on several forums, that many Peyronies Disease sufferers have also been diagnosed with hypotestosteronism/hypogonadism. I am considering this topic for a doctoral thesis. The (rough draft) question: Is low testosterone related to Peyronies Disease? To be more specific, could low testosterone result in a weak erection, which could result in trauma to the corpus cavernosa with intercourse/masturbation....eventually presenting as Peyronies Disease?

I have no real valid basis for this hypothesis at this point, other than scientific curiosity, and I would want to do a literature search (prior to posting) if you are interested. A VERY rough draft of a suggested questionnaire:

1. Have you ever had your testosterone level checked?
   * Yes
   * No
             If no, please skip to question  5

2. What was the level
    * 0-199
    * 200-299
    * 300-399
    * 400-499
    * 500+
3. If you regularly receive testostrone injections, or if you use a gel, what is the dose you receive
    Injection:
         * less than 99 mg
         *100-150mg
         *151mg-200mg
         * 210 mg +
4. How frequently do you receive this injection?
         * every 3 days or less
         * every 4-5 days
         * every 6-10 days
         * every 11-15 days
         * every month
         * other   _________________
5. If you use a gel, what dose doe you apply?
etc. etc, etc   I will also want to have a section that assesses low testosterone symptoms, in the event that someone has/had the symptoms but did not get a blood level. (this would need more attention and testing for bias & consistency)

This is just floating an idea for membership/guest input & suggestions.

Your thoughts?

[jackp]

Gramps

Some of my answers are not yes or no. I hope that is OK.

1. Yes

2. 0-199 In 1995 when I was first diagnosed with peyronies. I had symptoms of low testosterone for about 10 years before going to a urologist and having my testosterone checked. I complained to my PCP but all he would check was my PSA.

3. Injection 210+

4. Every 6-10 days.

5. Started on shots for a few months and then switched to gels. Gels did not do much good only made my blood thick. Started back on shots in 2005. Blood went back to normal.


I would agree that low testosterone is a factor in peyronies. For the about 10 years before TRT erections were week a lot of the time.

Jackp

[boomerang]

Have there been any polls related to cardiac health or circulatory disorders in people who have peyronie's?
It would help prove if there is a definte risk of cardiac conditions in later life for people who have peyronie's

I would ask (if I knew how)

Only for people over 55 with peyronie's (Because before that age, heart related conditions are less frequent)

1) Have you had a cardiac related condition? Heart attack, Rapid heart rate, irregular heart rate Y or N

2) Have you had any cardio vascular problems? Y or N

3) Have you had thread veins or varicose veins? Y or N

4) Do you have circulation problems,(cold legs, extremities) Y or N


I would be very interested in the results.

[YMENOW]

1) Have you had a cardiac related condition? Heart attack, Rapid heart rate, irregular heart rate Y or N  ---yes, irregular heart rate

2) Have you had any cardio vascular problems? Y or N   ---yes, aortic aneurysm so have a mechanical aortic heart valve

3) Have you had thread veins or varicose veins? Y or N  ----no

4) Do you have circulation problems,(cold legs, extremities) Y or N  ---no



ymn

[LWillisjr]

I must state up front that I had my cardiac conditions BEFORE Peyronies Disease.


1) Have you had a cardiac related condition? Heart attack, Rapid heart rate, irregular heart rate Y or N Yes

2) Have you had any cardio vascular problems? Y or N   No

3) Have you had thread veins or varicose veins? Y or N    No

4) Do you have circulation problems,(cold legs, extremities) Y or N    No

[bert]

Not sure how this works, but can I propose a poll related to pain resolution and type of pain experienced?
What type of pain did you experience -
- flaccid
- during erection
- both
- neither

Has your pain subsided or have you experienced pain for longer than 18 months?
- yes
- no
If yes, proceed to next question

How long until pain subsided -
- 0 to 3 months
- 3-6 months
- 6-12 months
- 12-18 months
- 18 months or longer
- pain has not subsided

[KAC]

Seems like a poll would be easier to make sense of it it were set up in a separate link using poll software.  Then we don't end up skimming through all the results haphazardly but have a concrete set of answers.  Not that I know how to set up these polls except through Facebook, but I'm sure some people here do.

[Neverheardofthisb4]

I had been catheterized twice within a couple years prior to onset related to ruling out bladder cancer and then surgery to remove kidney stones. I can't help but wonder whether it is perhaps a cause. I suggest a poll of whether participants had been catheterized prior to onset.

[Pressure]

Hello people,

I'd quite like this question put to a poll please, it would really help me understand how this offshoot of Peyronie's manifests.

-----

Poll title: Temporarily more curved

Question:

For those who notice their curvature slightly more pronounced and more curved for a period of 1-2 hours after sex or masturbation.

Has this problem worsened your curvature permanently?

Yes / No

Please explain how you got Peyronie's, how long you've had it, and explain how much it worsened.

And see: https://www.peyroniesforum.net/index.php/topic,8315.0.html for a more in depth discussion of the origin of the temporarily more curved condition.

-----

Thank you to all.

[LWillisjr]

Pressure,

I think you would get few response as I think you are describing a very unique scenario. Most people with Peyronies their curve stays the same during and after sex as long as they are fully erect.

Are you trying to describe the scenario where someone's curve is more pronounced when partially erect over being fully erect?

[Pressure]

LWillisjr,

No I didn't mean that. What I mean is basically after ejaculating, your penis looks about 10 degrees more curved only in flaccid for a temporary period of one to two hours.

NeoV says this is very common.

[Hontas]

I am really curious about the normal active phase length(how long it takes before it stabilizes or does it even stabilize), can we re-do the old poll again with more people? Since a lot of years passed and surely the forum got bigger

[Bananadude]

Perhaps aggregate results/approval for traction devices and surgeries--for each of the different ones?

[JoshuaV]

Not sure how this works, but can I propose a poll related to pain resolution and type of pain experienced?
What type of pain did you experience -
- flaccid
- during erection
- both
- neither

Has your pain subsided or have you experienced pain for longer than 18 months?
- yes
- no
If yes, proceed to next question

How long until pain subsided -
- 0 to 3 months
- 3-6 months
- 6-12 months
- 12-18 months
- 18 months or longer
- pain has not subsided

This poll would be really helpful. Does anybody know whether it was carried out and, if so, where I could view the results?