Just Diagnosed...but need advice.

[MikeFrederick]

First I will give a brief history of myself.  I am a 42 year old Caucasian male.  I keep myself in good shape and have had  no major health issue..until now. My wife passed away from brain cancer 3 years ago and since her passing I do tend to "think" things are wrong with my body more and stress very bad about health concerns.  I have had the same girlfriend for the last two years and have no reason to think any of my current issues would be STD related.

On August 9th, about two and a half weeks ago we were having sex and as I  inserted the penis it bent in a odd way, I did not here a pop nor did I feel intense pain at the time.  The next morning I felt mild pain on left side inside my penis which intensifies with an erection. This "annoying"  pain continued but again, I only really feel it when erect.  I let this go on for a week, last Monday I met with the Urologist.  I went into his office explained to him how I felt I injured myself during sex and It felt to me like nerve damage.  He did not ask to see my Penis just ask if I had a curve or notice anything odd...I answered No.  He said it was just coincidence that I felt the pain the next morning after sex and that he feels I have Peyronies Disease and to come back for follow up in 3-4 months!!! Does that sound right to you guys??  Is Peyronies that easy to diagnose? That was last Monday...over the last week I have been under enormous stress with this, I cant sleep.  Now to throw a wrench into things......over the last week I have noticed tingling going down my leg and pain/discomfort in pelvic and groin area.  I guess this could all be related to stress or maybe causing the penis pain?  I set another meeting with a different Urologist this Thurday for a second opinion and might now set one with a neurologist about the tingling in legs.
My main question for you guys is that...is Peyronies Disease that easy for a trained Urologist to diagnose and assuming it is indeed Peyronies Disease should I be taking oral meds or doing anything else here in the early stages to help myself?  
Thanks so much for you time and consideration to my case, I am very stressed as you can imagine and any and all help is appreciated.  Fred.

[james1947]

mikefrederick123

You have just met another incompetent urologist, as many (maybe most) of us encountered!!!
It easy for a good urologist to diagnose Peyronies, but to do that he has to make a physical examination and an ultrasound in flaccid penis.
Also his approach to do nothing and come back in 3 or 4 months is the worst thing you can do. The biggest chances to stop and even reverse this disease is to treat it in the early stages, now!!!
Don't be in panic, but you are the one that has the problem. I am sure if the urologist had the problem he would not just wait.
I am proposing you to read as much as you can on the forum before you see the second urologist. Especially read about Pentox (Trental) that is the first line medication for Peyronies.

My personal daily treatment now is bellow, but I neglected my Peyronies for almost three years after the onset and it was a disaster.
2*400mg Pentox (Trental), if don't have side effects 3*400mg is better.
4mg Cialis (cutting the 20mg in 5 pcs)
2*1000mg L-Arginine
2*100mg Ubiquinol, if younger than 40 may use 2*100mg CoQ10, much cheaper
VED, 20 minutes

Keep optimistic and welcome to the forum
James

[MikeFrederick]

Thanks James....I see you listed your daily treatment, but is this what you would suggest for someone at my early stage?

If any other contributors have ideas or suggestions for me I would greatly appreciate it, I am looking for as much feedback as possible.

[ashtown]

Hi MikeFrederick,The general piece of advice I have picked up on this forum is to start treatment sooner rather than later, since this is your best chance of a positive outcome. In my case it was over two months from when the first symptoms appeared before I started any treatment and that was only because I was awaiting confirmation from a urologist before starting. I now kick myself because I basically lost a good month waiting to see a so called specialist who was completely useless and couldn't seem to care less. He wasn't interested in offering any kind of treatment or even a follow up appointment.


At the very least I would have expected the urologist to examine your penis and anything less than that would be frankly negligent. It is apparently easy for a urologist to diagnose upon physical examination if you can feel palpable lumps inside the penis but after such a short time it's possible they wouldn't be that obvious. What I can tell you is that seeing a second urologist is a good idea and I would hope you will have a better experience with a more useful approach. Thursday is not so long to wait in the scheme of things.


Speaking personally I also have no curvature as yet but I still experienced pain not only during erections but also while flaccid, however simply taking three non prescription tablets mentioned frequently on this forum stopped 95% of the pain within a few days and these are all noted for helping with Peyronies Disease plus they are unlikely to hurt you if it's not Peyronies Disease by chance. I'm talking about Acetyl L-Carnitine, CoQ10 (ubiquinol) and L-Arginine. The latter is mainly for improved circulation while the other two physically battle the plaques that cause the pain and curvature typically associated with Peyronies. I've also found that soaking in a hot bath goes a long way towards relieving pain and relaxing things.


I was in your position only a month or so ago so I perfectly understand your anxiety. The best thing you can do is to educate yourself as well as possible and I would also advise you to speak honestly with your girlfriend if you haven't already done so. A lot of men try to hide this condition from their wives or girlfriends, becoming uncommunicative and depressed but that's not a useful way forward. Be proactive and ask your urologist about treatments such as Pentox which can help.



Good luck


Ashtown  

[ashtown]

One other point I forgot to add. No two cases of Peyronies Disease are identical so don't assume you are automatically a worst case scenario or equally that you should just "wait and see" which is often proposed by many doctors, despite having a fairly low statistical success rate. It's true that there is no known 100% effective cure, however there are many men who go through Peyronies Disease and find it hasn't had such a devastating effect as they had initially feared once the condition has stabilised. You can improve your chances by being proactive in a sensible way. For the most part all we are trying to do is improve our general health and that of our penis to aid natural recovery. I am still learning but there are others here with years of experience who can tell you more.  

[james1947]

MikeFrederick

I will say yes, you must to treat this disease as early as you can. As you can see from ashtown posts, we have some differences on our treatments but we think the same regarding the urgency to start treatment:

No two cases of Peyronies Disease are identical so don't assume you are automatically a worst case scenario or equally that you should just "wait and see" which is often proposed by many doctors, despite having a fairly low statistical success rate.

I will add also that the low dose Cialis that many on the forum are taking is not for ED, have testimonies and support from Peyronies specialists that it helps dissolving the plaques that most of Peyronies sufferers have.

James

[LWillisjr]

MikeFrederick,
What Ashtown and James are saying is correct for treating Peyronies. But lets not jump to conclusions just yet.

I think it highly unprofessional for a urologist to say you have Peyronies without examining you. Peyronies is NOT THAT EASY to diagnose. If he were my urologist that would be the last visit I would make to him/her.

You could have created some mild trauma that is causing the soreness. Your best bet is to monitor yourself at this point and track to see if the pain is getting any better or worse. It could take several weeks for any soreness or bruising to heal. Monitor yourself and keep us updated.

[George999]

I would definitely start taking Ubiquinol (CoQ10) at 100mg 3X/day right away.  It won't hurt you and if you are prone to developing Peyronie's, it might just do the trick to prevent it from developing.  As expensive as it is, I would consider it a bargain in terms of preventative treatment.  It is really obvious that the practitioner you made the mistake of visiting is fairly useless and you really need to take a little more time to make sure you don't get another one like him.  The best way to do that is to go to the urologists and other doctors topic and post your general geographic location and hopefully someone here can cue you in to a good doc who has already been vetted.  Most urologists (even many good ones) are either useless or next to useless when it comes to Peyronie's.  You need someone who really knows what he/she is doing and there are very few of those around.  In the mean time, its best to take every precaution to make sure as much as possible that you don't become a long term member of this community.  - George

[Jonbinspain]

Ubiquinol is, I believe, basically CoQ10 and Vitamin E. I found that buying them seperately was cheaper than buying Ubiquinol. I buy 300mg capsules of Q10 from an American company called Whole health. 1 a day with 1000 iu of Vitamin E.  

[james1947]

As I understand from the forum Ubiquinol is what our body uses. Our body converting CoQ10 to Ubiquinol, but this process is slowing down at the age of 40, this is the reason people over 40 should take Ubiquinol.
Quote from George999:

The body uses Ubiquinol, not CoQ10.  Thus the human body must convert the CoQ10 you take to Ubiquinol.  IF you take Ubiquinol, this conversion process is not needed, thus you are guaranteed that you are getting the substance even if your body has problems converting CoQ10 to Ubiquinol.  That is the difference between the two.

I don't know if is connected to Vitamin E.

James

[MikeFrederick]

UPDATE: Great news, Les was correct!! After going for a second opinion with a Urologist that takes his job seriously it was determined with the help of a MRI that I do not have Peyronies Disease.  I was diagnosed with a bulging disk that was pushing against rectum nerves causing pain to the penis and pelvic area.  As Ashtown says in a PM to me, this goes to show everyone who is dealing with Peyronies Disease the importance and how difficult it can be to find a Urologist that knows what he is talking about concerning Peyronies Disease. In addition to Ashtown  I also want to give special thanks to Les (lwillisjr) for all his advice and knowledge he shared with me on this board, email and via phone...thanks LES!!!
Good luck to everyone here fighting Peyronies Disease, as I have learned, although not yet a cure, plenty can be done to get you back or at least close to what my new friend calls a straight "wedding dick"!!
Now I am off to recovery of what looks like eventual surgery and maybe a life long battle with back/nerve pain....but keeping optimistic !! Good day.

[fubar]

Mikefredrick

Your initial post you say your doctor said it was just coincidence why then would he say it is Peyronie's. I personally would not think in the next sentence he would say you had Peyronie's. Maybe you just misunderstood or interpreted  what he was saying wrong. I know urologist can be jerks as well as doctors as i have had the  same experience. Then again i would never have thought i had Peyronie's from just having pain.

Good to hear you are in the clear! Hope all works out with your back. I am having back issues myself not much fun.

Fubar

[MikeFrederick]

Fubar...your guess is as good as mine, but I have documentation in my possession that's say...DIAGNOSIS: PEYRONIES DISEASE. I was in shock leaving that office with paper in hand.  

[LWillisjr]

Fubar...your guess is as good as mine, but I have documentation in my possession that's say...DIAGNOSIS: PEYRONIES DISEASE. I was in shock leaving that office with paper in hand.

I appreciate MikeFredrick posting his questions and story here. This is a great example of what any of us can experience. Urologists who have good intentions and we expect to be knowledgeable, but yet improperly diagnose Peyronies. This then puts one on a path of emotional and mental stress and we try to relate all of our symptoms as being Peyronies disease. In MikeFrederick's case, the symptoms just didn't add up for me. And after discussing some other symptoms he shared with me, led to a different urologist visit and a proper diagnosis completely unrelated.

I've always been an advocate to get a PROPER diagnosis so the PROPER and relevant treatment can be pursued.

Les

[ashtown]

I feel the first urologist's failure to properly examine him, while casually concluding it was likely to be Peyronies and telling him to come back in a few months was clear negligence and may have led to some serious medical problems if he hadn't gone to see another doctor.  

[Hawk]

Mike,

Do not rush into surgery.  I have a herniated disc that had me on crutches and maximum pain meds for a month.  I lost over 50% of my leg strength in one leg.  I had total numbness on my inner thigh to the point it felt like I was touching someone else's body when I would grab my leg.  I was actually beginning to think I would be permanently disabled. After 1 month the insane pain decreased.  After 2 months I as 80 - 90% normal.  after 3 months it was like it never happened.  I am active and seldom even think about my back.  I am thankful that it took a month to get my initial visit with a neurosurgeon or I would have been on the fast track to surgery.

They were going to do surgery on my wife's neck and we went out of state to a spine center (recommended by a friend who is an orthopedic surgeon).  The spine center said the likelihood of improvement was remote and it would just as likely be worse after surgery.  Best chance of improvement is when:
1. Pain had a sudden onset from an injury
2. The pain radiates far from the spine
3. The mapping of the spinal defect (visible on MRI) matches the radiating pain.
4. The pain continues unimproved past a 6 months healing period.

Good Luck

Hawk