New from Canada

[Duey1083]

Hello everyone,

I'm obviously new here...I've been struggling with mild-ish ED for the past 10 months.  I finally got into see a urologist ~2 weeks ago; social healthcare works extremely slow here in Canada

Anyways, the symptoms I have been struggling with over the past year started overnight (after a personal pleasure session, lol):
1. After masturbation, the penis tissues swell up as though lymphatic fluid isn't draining.  NOTE: I never experience a priapism since the penis was not erect.
2. Erections were soft and I often lost them, but are also not painful
3. Veins have been dilated throughout penis ever since onset of condition; superficial veins dilated and I can also see many smaller thread veins that weren't apparent or obvious before
4. Intermittent (every couple of days) dull ache and pulling feeling in penis when flaccid
5. Lack of morning wood
6. No obvious curvature (yet), though my penis goes slightly to the left when erect

My urologist told me he could feel some scar tissue right at the very base of my penis, which was causing some blockages/flow restrictions in and out which he says explains the dilated veins and weak erections.  I haven't seen anything about dilated/thread (spider-like) veins with Peyronie's.  He informed me that up to 4% of guys get this condition and I was just one of the unlucky few.  However, he never mentioned Peyronie's specifically.  Do my symptoms seem to align with Peyronie's?

Anyways, he prescribed topical Verapamil Gel and Cialis and actually told me he wants me to checkout through the self service aisle everyday.  I'm just confused and obviously disappointed and need help/support as a single guy.

Thanks guys,

Duey

[Duey1083]

Hey guys,

Really hoping someone can give me some words of encouragement.

I'm going to give my urologist a call; I live in Canada, so I can't switch or find a Peyronies specialist like you can in the States.  I'll ask him to either confirm whether or not he sees my scar tissue as Peyronies.  If confirmed, has anyone from Canada been able to convince their urologist to start them on Pentox?

If I can't convince him to start me on that drug, what should I do?  I'll look at the L-Arginine and CO Q10, I believe.  Should I consider traction considering I don't have significant curvature?

Thanks guys,

Duey

[james1947]

Duey

To your question:

Do my symptoms seem to align with Peyronie's?

I think yes. Your uro told you clear that he feels a plaque that makes blood flow restriction, this is the reason of the ED and the light bend. Don't wait that the light bend will became big bend.
You are not mentioning if he prescribed low dose Cialis daily or just for intercourse.
Checkout L Citrulline Malate. Some of us like it more than L-Arginine.
I am advising you to start VED also as soon as you can. Carefully not to damage yourself.
Last, do everything you can to get Pentox.

James  

[Duey1083]

James,

Thank you very much for your reply.  I figured as much that the scar tissue he identified was a plaque, which really bums me out considerably.

I put a call into the urologist to confirm it too, and have also requested to be put on the Pentoxifylline.  I'm hoping he's open minded.

My urologist has me on low dose daily Cialis.  He had me on 5 mg but i was experiencing horrible back and leg aches that had me near tears.  I stepped the dose down to 2.5 mg every other day, stepping up to every 36 hours, with the target being 2.5 mg everyday.  Anyways, so far I'm tolerating the lower dose treatment... I'm hoping my body adjusts.

This is a complete newbie question, but does the L-Arginine and other supplements recommended have any adverse long term health effects?

Also, I'm a little nervous about trying out a VED device due to how veiny my penis has become since this all started.  Is the goal of using the VED this early on to prevent curvature and maintain shape?  How would it compare to using a traction device?

So sorry for all of my questions.  Thank you for your reply!

Duey

[Pfract]

Let's hope he put's you on pentox without a problem. As for the rest i agree, and be careful with the VED. I almost injured myself seriously using one...  

[LWillisjr]

Anyways, he prescribed topical Verapamil Gel and Cialis and actually told me he wants me to checkout through the self service aisle everyday.  I'm just confused and obviously disappointed and need help/support as a single guy.

Sorry you have joined us. Just wanted to let you know that anyone I know that has tried topical Verapamil has never seen any results from this. IMHO the topical variety just doesn't work.

[Duey1083]

I'm really sorry to have joined too...no offense

Yeah, I've done reading on it and I can see why it wouldn't be very effective.  I'm really REALLY hoping my doc puts me on the Pentox.

Pfract, can I ask how you almost seriously injured yourself with the VED?  I'm really overwhelmed with the various treatment methods.

My biggest fears right now are lost opportunities for relationships, the Cialis eventually becoming ineffective, and incompetent health care.  I'm 29 and this has devastated me.  Based on my initial symptoms, I wouldn't have even ventured to guess this could all be caused by Peyronies, and then having to wait 8 months to see a urologist.

Have people been successful in meeting women with this condition and ED to boot?

Feeling down  

[Pfract]

Well... I used the device with the penis erected. Avoid doing that at all cost. As for the symptoms, ours are similar for the most part, but I fractured my penis. Also feel the same about girls and no more possibilities for relationships. And we are the same age...

[Duey1083]

Good news!  My urologist reluctantly agreed to put me on Pentox... he didn't think it would do anything but relieve the pain, which mine is mildband only present when flaccid.

He warned me about a couple weird side effects though: muscle cramps in the legs and very strange dreams.  Anyone experienced this while using it?

Now, to get a VED...hopefully I can get one in Canada.

[Pfract]

I took pentox, and I would be more concerned of the light headedness and the head aches. But it normally fades away with time! Definitely helps with more blood flow to the penis, but by itself is not enough. Good luck!

[Duey1083]

Thanks guys.

I've been PM'ing with Old Man about advice for VED devices.  I'll probably get the Vitality one cylinder OTC online; fortunately the website he gave me ships to Canada.

So, my treatment protocol will be the following:

1. Daily 2.5 mg Cialis
2. Pentox - not sure what the dosage is that my doc gave me yet
3. Possibly Co Q10 and L Citrulline Malate
4. Verapamil Gel
5. Daily VED using the one cylinder protocol

Once I get used to this therapy, I might add in traction therapy as well.

Any other suggestions, I'd be open to.  In case I'm breaking forum rules in the introductions section, feel free to move my thread.  I apologize in advance if I'm doing so!

Duey

[james1947]

Pentox usual dosage is 3*400 mg per day.
Regarding Verapamil Gel? Read what other forum members wrote about.

James

[nowhereman]

Isn't Canadian health care the biggest piece of crap imaginable?

Anyone else in the world have to wait 8 MONTHS to see a urologist? That is how long I had to wait as well...

[Pfract]

Oh my god... And is there really on way around it? Can't you guys pay and go to private healthcare? How do you deal with the issue if you need to see a doctor fast? Please explain better how the system works....  

[Alvoip]

Hey man.

I am in BC, same age as you (acquired this 2.5 years ago) and went through many of the things you are dealing with. I was told to do nothing and that is what I did for the 2 years and I regret it, only tried Cialis for 5mg/d for a short while but stopped due to not needing it for ED and it being STUPIDLY expensive. I tried supplementing omega-3 (900mg/d), Vit E (400mg/d), Vit D (800 IU/D) with no results after waiting 2 years. You sound like you are already on the good stuff (Cialis OAD and Pentox).

Both my uro and GP COULD NOT feel any palpable scar tissue on in my penis (man did it swell after that uro exam though...). I was diagnosed with "suspected" Peyroine's disease by uro.  My grandfather does have a duputryen's contracture.


I'll go through your list in order to compare.


ED: I can still get pretty good erections on occasion, fairly straight when fully engorged but I have discomfort from inflamed lymph/veins under head currently which pulls the skin taught and turns glossy. At times it can be moderate+ but this may just be due to acute inflammation or anxiety which can get bad. Morning wood is always half inflated and mine wake up and can be painful/very dilated branching swollen veins that seems to be spreading and creating a network of gross dilated and tender veins (under the head/suculus) to this day.

Slow wait list: Yeah, I waited 11 months. I am on the wait list AGAIN but this time it is shorter (3 months?). I am going to bug about getting an ultrasound and pentox. Be glad you aren't waiting for a dermatologist, it's 12 months... stay out of the hospitals they were Cuban grade awful in 2008.

Symptoms starting overnight with masturbation: for months prior I had hard flaccid, eventually turned into constant pain flaccid and erect for a month but ignored to due to compulsive masturbation / edging for many hours a week (sometimes dry). I woke up a month later with a very noticeable bend down and left. Flaccid pain to this day and seems to go through bouts of flaring up and becoming madding to this day and worsened with touching/masturbation. I'd recommend limiting masturbation to once every 10-14 days if you can stand it (limit porn browsing too), I have lymph/vein problems too and they progressively got worse likely from repetitive trauma to the tissue. I personally recommend a 4 month abstinence/hands off as a Hail Marry to see if it helps with lymph drainage or perhaps resolution of thrombosis if present. I have only tried 53 days and had to stop due to perineum pressure and swelling which I assume is CPPS from the stress/anxiety. Don't self exam/prod at it every day, if you need to check do it once a month.


1) Swelling after masturbation. Yup, me too. Use lots of lubrication, be gentle, and keep duration as quick as possible. It gets pretty gross looking for me (especially the veins and skin swelling).  

2) soft erections / lack of pain: this has been variable for me over the years. I have experienced mixed bags of extremely ridgid over engorged erections, to very soft, low pain to high pain. Try to keep anxiety low and do not be aggressive with partial erections until they inflate to an acceptable degree.

3. Dilated superficial/thread veins. YES, remarkably so. was one of my first presenting signs too. Still getting more to this day, 2 main ones on each side, the dorsal vein (painless), and a network of smaller ones connecting them with more channels forming. They run eventually progressed from pubic base to under the head. In my case they are  painful under the head of the penis with a band of lymph traveling horizontally across most of the penis (340+ degrees around head). If they really flare up or you notice lymph channels then give them a few weeks break (especially if tender), I am bad about this and they have only gotten worse in my case. Cialis made this even more prounced, it looked like a body builders arm full of vericose veins or something.


4. dull ache and pulling feeling in penis when flaccid. Yes, my initial symptoms had feelings of pulling/pressure and also visible contortion/rotation to the left. I also get perineum pressure too but that may just be from sitting to much, stress (cpps), etc.

5. Lack of morning wood. Yup, varied in my case... most are 40-60% and uncomfortable enough to wake me up multiple times a night. A few times a month I will wake up with a VERY rigid erection that becomes uncomfortable and I have to walk off (sometimes within minutes of falling asleep) and they repeat multiple times.

6. No obvious curvature. Mine was precipitated by a month of pain and bouts of the curvature being fairly straight.  To this day I get some erections that fill in better than others though they have become rarer. I suffer from hour glassing and a ventral curve now depending on state of erection and the day.

Scar/Veins/ambiguity of symptoms. I dunno, my uro was ambiguous about my diagnosis too though yours seems to have palpated scar tissue. I can vouch for a fact that the veins in mine have taken the brunt of this too and I think I remember reading NeoV saying he had a lot of problems with lymph/veins as well. You are on a very good starting regimen from first glance so the only thing right now is to monitor it (don't poke it every day though, it makes things worse trust me).

Once your follow up is over I'd try abstaining, exercise, eat right, and be gentle (no prodding and excessive checking).

[nowhereman]

Hey Pfract,

This is how our system works, you pay huge amounts of your paycheck into our public healthcare system, they kept upping the amount and it didn't have an effect on the wait times/service. From my short bit of research I'm thinking at least 10% of gross income is about right. The wait time at the hospital emergency room is several hours at least, even when it isn't busy and it seems to keep getting worse over the last decade or so. There is no private healthcare in Canada except somewhat in the province of Quebec, but even though I have fantastic insurance coverage through work, it doesn't cover anything like that.

The lack of a private healthcare "option" is the entire problem, we are the only developed country in the world without a private healthcare "option",  if anyone even hints at privatizing in the least the pitchforks and lynchin' rope comes out. Because most people until they are old, it seems to me, must be pretty healthy, because if they had to endure the healthcare nightmare hell that I have, they would call it literally a humanitarian crisis and it would be changed immediately.

You don't get to choose doctors, or anything reasonable like that, you get one and if you don't like them too bad, you will be on a waiting list forever. that goes for general practitioners, or any type of specialist. So if you get a scumbag GP/specialist....tough, suck it up.
I don't have a family doctor, not enough to go around even though I pay at least several thousand a year into this sinkhole.

I live near the American border and I have gone there to a specialist, and paid for everything out of pocket, I have had different tests done there at clinics because in Canada they do the absolute bare minimum or less when it comes to testing. Unfortunately, I would happily get a family doctor there and specialists, but you can't get prescriptions filled in Canada from an American doctor, and they aren't allowed to ship in meds.

So in answer to your most important question. If the waiting list is too long for the specialist you need and you need to see a doctor fast.....what do you do?
The answer is you suffer, die, intestines fall out....whatever. THAT'S WHAT HAPPENS.

This isn't some fvckin' backwater 3rd world country......And it has ruined my life, my health problems haven't ruined my life, Canadian healthcare has. Because if I were an American I would have had my problems sorted by now. But think......8 months to see a doctor, ok gonna have to see him maybe two or three times how long is that, then surgery or something another several months......you are now years in if things have worked out flawlessly. But as we know they rarely do.

I could go on about this forever, but I won't .....We have a federal election coming up shortly and I haven't heard anything this topic.  


Oh yes, I will add that, I had to go to a foot doctor today, and for some reason unlike 99% of health practitioners in this country,   they seem to have private clinics, I have never heard of the likes before.......guess how long it took to get in to see the good doctor.......ONE FU#&ING goddamn day......Now I wish some bureaucratic fella' might just connect the dots sometime on that little inconsistency and come up with why that wait time spread might be occurring, and have the guts to resolve the matter.  

[nowhereman]

Duey1083,

There is actually a peyronie's specialist in Ottawa, who I believe practiced with Dr. Tom Lue, and he only see's guys with peyronie's, so if it at all possible to see that guy I would recommend it...
He is actually on the list on this site under Peyronie's specialists in Canada, wherever that list is.

[Duey1083]

I will be replying here soon with a more detailed response.  So happy I've found others with the same feelings about our healthcare system.  

At the risk of breaking a forum rule, I'm just going to say that the federal election won't do crap about our healthcare.  If new guys get elected in, it won't change a thing...the only thing they will think will help is injecting more of our money into a broken system, which won't help.

I'm fed up with our healthcare system.  It literally makes my blood BOIL.  A two-tiered system is what we need.  There's a place for certain things to be socialized like cancer treatment, heart related surgeries, anything potentially fatal; I would hate to see families bankrupted to save a loved one.  Then, there are things that should be available privately and publicly; urologists, dermatologists, etc.  Basically anything deemed elective treatment should be offered in a two-tiered system.

I did have to wait for a dermatologist...for 9 months!  I also had to wait to see an immunologist for 9 months to help me figure out what I was having near anaphylactic  reactions to.  Well, they tried 40 known food allergens... nothing.  Then I noted I had taken a couple motrins after wisdom teeth extractions...that's what I'm deemed to be allergic to; a suspected ibu profen allergy.  Wasn't tested for it while I was in his office of course.  Bare.  Minimum.

[LWillisjr]

This is now locked as an introductory topic. Feel free to post questions in the appropriate boards on the forum.