Recent vasectomy left me with Peyronie's

[newlybent]

Hi,
Thanks to everyone who runs this forum for giving us a place to learn and get support.

I'm a healthy 49-year-old with a (previously) great sex life.  

My horror story begins with a vasectomy 4 months ago.  The healing process went badly on the left side.  I got a staph infection in the incision, which was not treated properly, and the infection it grew worse for many weeks before they gave me an appropriate antibiotic.  Friends joked that I had a "staff" infection, and sadly it turned out to be true.

After finally clearing the infection, and a long break from intercourse,  I began to notice pain in the left side of my penis when I resumed having sex.  The pain actually brought tears to my eyes.  I thought it was merely another effect of the lingering pain that I have in the left side of the scrotum and and testicle post-vasectomy, and my doc said just wait and see if it all eventually gets better.

Well, I waited, and the pain in the left side of the penis continues.  Then one day a couple weeks ago I looked down in horror and noticed that my penis is bent about 30 or 40 degrees to the left!  And the pain is coming from the tight area of the bend, which I now know is scar tissue.

Frustratingly, when I presented this to two different doctors, they said it's Peyronie's disease but both claimed it had absolutely nothing to do with the vasectomy.  Pure coincidence.  It just happened by chance during the same time as this messed-up healing process from the vasectomy, also on the left side. Sure, doc.  Have you noticed how doctors can be infuriating this way?

Finally I spoke with one of the best Peyronie's experts in the country and he said, of course it's related to the vasectomy, and the subsequent infection.  He said, in essence, "You had a big inflammatory event down there in that region, and under those circumstances all it took was some little trigger, some minor penile trauma, to start the cascade of abnormal scar tissue formation that is Peyronie's."

It was such a relief to have a doctor actually acknowledge what seemed so obvious!

So today I'm left with pain in the scrotum from nerve entrapment in scar tissue; pain in the left testicle; and worst of all, Peyronies disease with a significant bend and nearly an inch of length lost.

Now I'm hoping I can stop the progression.  As it stands I can still get good erections, and I can still have sex (although it hurts).  But if the Peyronie's progresses, as I know it so often does, I could be looking at the end of my sex life at age 49.  

All because I tried to do the responsible thing and get a vasectomy.  No good deed goes unpunished, as they say.

I'm trying my hardest to keep my spirits up and believe that this is not necessarily the end of my sex life, but as you all know, some days it's damn hard not to be depressed.

[MattFoley]

OK, newlybent, so the counter-attack begins now.

You need to take back control and start looking at minimizing the damage and hopefully restore as much as possible.

Has the doctor prescribed Pentox? That's your first line drug in this battle. Start taking it. It should help with pain and help drive blood into the damaged area to help you heal.

What else has your doctor recommended?

Keep your spirits up. People in this forum make great progress in restoring their minds and bodies. When you get your head straight, spend as much time as possible reading the various threads and sticky's to help put things in proper order for you. This won't be easy but it's not impossible. The good thing is that you're taking action early so you have an advantage.

Also, my main emphasis here is testosterone so it would be great to know where your level is at this point. A full blood panel will answer many questions about testosterone and your health in general. Please consider asking your doctor to order the blood panel tests.

Ask as many questions as you need. Everyone is here to help you. Everyone I've met here has been very helpful and they will help you as well.

God bless.

[newlybent]

MattFoley, thanks for the kind words and suggestions.  I have an appointment this week with a new urologist who I plan to ask for Pentox and for a Testosterone test.  Your comments on both make me more determined than ever to make sure I get both.   I will add more comments here if I learn anything of interest.

Thanks again to all the moderators and posters here.

[MattFoley]

Great news, bro.

Ideally, have your doctor request a blood test of the following:

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
Vitamin D

Knowing your levels will tell us a great deal about what is going on with your body.

Good luck and God bless.

[james1947]

I was proposing a simple hematology blood test before this deep check up. It will give you a basic knowledge where you are.

James

[LWillisjr]

newlybent,
You stated that you spoke to a Peyronies expert. Why aren't you seeing him/her for treatment?

[newlybent]

@willisjr - Good question.  Since my last post I've seen a local urologist who came highly recommended, but he was reluctant to prescribe any meds.  Preferred the "wait and see" approach.  

So now that I ruled out that local referral, I'm going to make the 3-hour drive to Los Angeles to see Martin Gelbard, one of the top Peyronies docs in the country. He was the lead author on the recent Xiaflex study, and he's the author of a Peyronies website

We've spoken on the phone and he recommends my starting Cochicine and Pentox ASAP.  But first I need to see him.  So I have an appointment with him tomorrow.   Hoping that starting both drugs while in this early stage will either reverse or hold steady the disease.

It's a full-day round trip to see this doc, but I feel fortunate to have an expert within driving distance.

I've seen a lot of Pentox discussion here, but is anyone on Cochicine with results to report?

[Hawk]

Just run your mouse pointer over the word colchicine.  I was on it in the beginning and stopped because of the lack of any studies showing positive results and because of the side-effects.

[Skjaldborg]

Newlybent,

If you are that close to LA, you should go see Dr. tom Lue at UCSF in San Francisco. He is probably the best in the nation.

-Skjaldborg

[newlybent]

Hawk, what side effects did you experience from the Colch?  I'll take any first-hand reports I can get.  I'm more concerned about the Pentox anxiety & insomnia that seems so common, since I already have a tendency to those issues.   I'm just hoping I can tolerate ONE of these drugs.  Are you taking Pentox, and if so how is it treating you?

Skjalbord, thanks for the suggestion, but SF is an eight-hour drive (California is a big state) so a doc there is a bit too far for me.

[Hawk]

If I had equal access, I would choose Lue over any doctor in the country based on the knowledge I have.  Admittedly that knowledge is somewhat limited in that I have not seen every doctor in the country but Dr. Lue is known for his research, innovation, surgical skill, and bedside manner.

[RoyHobbs]

I agree with Hawk. I live in LA, but I still drove up to San Fran to see Dr. Lue. I have a follow up in a month.

[Hawk]

Hawk, what side effects did you experience from the Colch?

I had some stomach upset and diarrhea.  It was not that bad but a month after I was on it Dr. Mulhall had me get a blood test and my white blood count was down.  That is one listed side-effect of Colchicine.  The problem is Dr. Mulhall never got any initial blood work on me so there was no way of knowing if the med. did it or if it had been low.  I thought that was a pretty backwards way of monitoring the drug.  I then did a Google search of side-effects of colchicine. It is enough to make you gasp.  It sounds much like chemo.  Hair loss etc etc.  I suggest you research it.  I am not suggesting most people get such side-effects but some of them can be permanent and for a drug with NO clinical data that says it helps Peyronies Disease I was not willing to take the chance of permanently impairing my immune system.  Especially since I am a cancer survivor.

What kills me is these doctors ridicule us for using supplements or devices that they say have no clinical proof to support them, then they do the same thing with drugs that have a much greater risk than most things I would ever try.

[MattFoley]

Hawk, it still amazes me how doctors make these medical recommendations without running a full blood panel to see what is going on with a patient. They started treating me for Peyronie's in early 2012. I just got a full blood panel for the first time last week. There are things in those results that are simply abnormal. I've now been recommended to see an Endocrinologist. It's absurd that anyone would have to wait this long to get this done. And, the only reason it got done is because I sat there and hammered the urologist about it!!

This is why one of the first things I plead with new members here is to get their blood work done. Blood work can tell a doctor a great deal about what is going on.

[newlybent]

Thanks everyone for the input.  Fortunately I had a full blood panel just a couple months before developing Peyronie's, so I have a good baseline for future comparisons.

I agree the Colch side effects sound scary, but frankly so do those of Pentox.  I'm assuming I'll want regular blood panel status updates if I'm on either one of those drugs.

I'll certainly let you all know my thoughts on Dr. Gelbard, and his recommendations for me, after my visit tomorrow.  I liked him a lot in my initial phone consultation with him, and I'm looking forward to meeting him face to face.

Any further comments on Colch or Pentox or meeting with urologists are welcome!

[newlybent]

One more thought:  Traction devices?  Any recommendations on a particular brand?

[Hawk]

That is an excellent question for the Traction board  These introduction topics are getting a little long. It is really to your advantage to go to the boards where members most interested in that topic tend to monitor and post.

[newlybent]

Met with Dr. Gelbard in LA today.  (The 3.5 hour drive, each way, in LA traffic was hell, but the doc was great).  He was optimistic about medical treatment since my Peyronies is new (about 2 months) and moderate (30 degree bend).  He described the plaque as "diffuse" and soft, saying this was further reason for optimism about medical treatment possibly reversing it.

As expected, he prescribed both Pentox and Colchrys (the latter cost me over $200 at the pharmacy).  I've read the side-effect reports in this forum, so I know what to look out for.  He suggested trying the drugs for two months to see what happens, and if no improvement, then adding some traction.

I'm just glad to have some reason for hope.   Will let you all know how it goes, in the appropriate boards for these drugs, as things develop.

[Hawk]

Great news!

Was the other drug that cost you $ 200.00 Colchicine ?  I don't remember it being so expensive.

[Old Man]

Hawk:

The reason this med is now so high is that the company's patent ran out. This allows others to produce the generic form and therefore name their own price which is what happened causing the price to skyrocket.

Old Man

[Hawk]

When a company has a patent they have the market cornered.  Usually when a patent runs out and others start producing it they undercut each other and the prices plunge.  

[funnyfarm]

Old Man I believe you are mistaken, the drug gained exclusivity in 2009 and the price per pill went from 9 cents to 4.85.   See last section in wiki:

http://en.wikipedia.org/wiki/Colchicine

Oddly it says the patent was only good for 3 yrs.  so apparently the generics are quite expensive too.

It can be purchased online or outside the USA much more economically:

Colgout (Colchicine 0.5mg) 100 Tablets/Pack (Colchicine)

Colchicine generic 1mg

When I researched it previously though, it seemed like it might have some harsh side effects.

[Hawk]

Funnyfarm,

Explain this to me slowly.  What made it go from .09 to $4.85

[Old Man]

FF:

I still maintain my position on why the price skyrocketed. There are some posts earlier on in the forum that support my position. Don't have the address at the moment, but if necessary you might try to do a search on the word to find it.

I don't have the time at the moment as I am having computer problems with an angry virus wanting to take over, etc.

Regards, Old Man

Hawk: I also need to know the reason for the increase.

[funnyfarm]

colchcine is a natural plant derived anti-inflamatory / pain killer used to treat arthritis/gout.  It is has been used for many decades, in fact it pre-dates the FDA and as such was never approved by the FDA (similiar to aspirin).   However the FDA has been targeting unapproved drugs, since 2006, in what they claim is for the sake patient safety.  

In the case of colchicine they allowed a pharma company to conduct the FDA studies and testing to convert it to approved drug status in exchange for the exclusive right to market the drug (from 2009 through 2012).  Effectively the drug went from OTC to RX and the cost to the patient went up 50 fold :0  

As you can imagine this is a controversial topic because many (including myself) feel these changes have nothing to do with patient safety and everything to due with the FDA effectively being controlled by big pharma.  

ps Old Man, In retrospect I think you are correct it went off patent in 2013, however the generic is very expense vs the price prior to 2009 when it was OTC.  Very confusing, I know.  Wiki does a pretty good job of explaining it though.  

[Old Man]

FF:

At one time, I used Cocchicine for a gout problem. It finally got rid of it. A change of diet helped preclude it from appearing again.

Several older than me friends also used it for gout.

Old Man

[Hawk]

In retrospect I think you are correct it went off patent in 2013, however the generic is very expense vs the price prior to 2009 when it was OTC.  Very confusing, I know.  Wiki does a pretty good job of explaining it though.

Are you saying Colchicine was OTC before 2009  I certainly had a prescription for it in 2005 or 2006  

[funnyfarm]

Technically speaking it was not OTC but "FDA unapproved" which meant any company could manufacture it prior to 2009 and hence the lower price previously.

This video explains everything:  FDA approval of ancient remedy sends price soaring - CBS News

[Hawk]

Thats very clear.  Thanks for that.  Clearly when  one company has exclusive rights, prices soar.  The more companies that sell a drug the greater the competition and prices drop.  

I was not aware that some old drugs that predated the FDA approval process were subject to approval and ending up in the hands of one company.

They say you should learn at least one new thing every day and I did