Don't let pride prevent you from getting the help you deserve.

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Knight

"Don't let pride prevent you from getting the help you deserve."

A new friend of mine said these words to me yesterday while conversing on the phone. Other than my wife and the 4 urologists I have seen for my condition he is the only other person I have ever spoken to about having Peyronies Disease. He is also the only other man I have personally spoken to who also suffers from this disease. He is a member of this board and is currently recovering from having grafting surgery a little over a week ago and he was kind enough to call me yesterday morning. Marty, your words of encouragement have prompted me to make the call I have been struggling to make for months now. When I really started looking at what has been holding me back it was pride, or more specifically the embarrassment of what we have to go through to get help. Let's face it, it's not quite as simple as getting a physical or getting checked for a sore throat. Sure there is fear if the unknown and the pain involved but to living like this is no way to live and all the other common options (most of which I have already tried) seem like going to a gun fight with a dull butter knife. We have qualified surgeons and success stories all around us and I intend on being one of the next success stories.

I have made an appointment for 6/30 with Dr. Landon Trost at The Mayo Clinic in Rochester, MN. I will meet with Dr. Trost for an exam at 8:30 am and then they already have me scheduled to get an ultrasound while I am there. After the ultrasound I meet with Dr. Trost again to get his treatment recommendation. I can almost guarantee before I even get there that he is going to recommend excision and graft surgery based on my history and current condition and I'm going to go for it. The only thing left to decide is if I will need an implant at this time or if I should take a wait and see what happens approach. A big part of me says if the doctor is willing to go for the implant (if possible) while they are already in there. Why go through such an invasive process twice is my reasoning.

I intend to use this thread as my venue to document the process. I'm worried about the time I will most likely miss from work but every day that goes by is a day none of us can ever get back and I just can't accept this condition as my "normal" life anymore. I have pain almost 24/7 and it is driving me insane. I'm loading up and attacking this with  full force. If I come out on the other side damaged forever so be it, it's not like I'm not already damaged goods as it is. At least I will know I used every available resource I had to fight the disease.

Peyronies be damned! Give me a skilled surgeon with a sharp knife and let him cut me.

Straighter days ahead!

emasculated

Wish you the best Knight! Good that you have your wife by your side. It sucks soo bad to be alone...
Just one question: You said you have pain. Here in Germany the doctors always say no surgery unless condition is "stable". Is that maybe false? I don't know how "stable" is defined really.. but I guess no further progression and no pain. But doctors here suck so they may likely be wrong.  
"Without health life is not life; it is only a state of languor and suffering - an image of death."

welshwales

Good for you man! It's a matter of taking the bull by the horns, rather than running from it. I look forward to reading about your progress. Good luck with the appointments etc.

james1947

Knight

Good luck and please update us regarding the final decision, how and when.

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

Nordicz

Knight,

I am really happy you made that call. I don't think you will have any regrets. If you do end up having to go a surgical route, I wouldn't dwell on the loss of work side of things. I in particular have never had this much down time in my working career of 26yrs. Not even in between jobs. This is a health issue not necessarily one that is life or death but still very important to a person's well being.

Just think of the things our wives or girlfriends have to go through to maintain their health for us. Such as pap smears, Breast exams, ect... on a regular basis. Those moments are not enjoyable office visits but necessary, they have to fight through that feeling of embarrassment and have chucked their pride to the side for a short moment in time. We as men just are never faced with having to address issues with our Penis. Maybe we should write a book and a play called the Penis Chronicles. :o It worked well for the ladies.

I really hope that following your appointment that Dr. Trost can provide the options you need for a much better future. I personally think he can. Good for you.  

MeMo

Knight
wish you the best, while surgery looks the only way to get rid of this nightmare why do not try it?
hope read your positive feedbacks soon.


Knight

Today I met with Dr. Landon Trost at Mayo Clinic in Rochester, MN. for an examination, blood work and an ultra sound. I found Dr. Trost to be very confident, yet humble. He is extremely knowledgeable but didn't pretend to know it all and the whole time we were together I felt he was in complete control of the issues I'm facing and the possible solutions to the problem. He re-emphasized to me that there are no cures and that my penis will never be what it once was. He made it clear that if surgery was the option we decide to go with that there are risks, both short term and long term, and that it is extremely invasive and the recovery time can take up to 6 to 9 months.  Apparently excision/graft surgery is even more complicated than getting an implant.

This is how my visit went:

Met Dr. Trost and his assistant and discussed all the same old, same old about my medical history, symptoms, treatments I've tried for Peyronies and the fact that not even many professionals really specialize in this area of medicine. We decided to proceed with an ultra sound and pull some blood to check my T levels. Right out of the gate the first nurse ended up sticking herself in the finger with the 1st needle she had just pulled out of my penis! She disappeared for a while and a second nurse came in to take over. All in all they had to inject me 3 times to get me hard enough for the measurements and ultra sound. Let's just say I really wasn't in the mood....lol! 10 minutes after the 3rd shot I was hard enough to knock walls over so they started in with the procedures.

I have a 60 degree curve to the left, with a 60 degree upward curve, with a 30 degree clockwise twist. I have severe hinging on one side with additional hinging on the other side. I have severe narrowing and a nasty hour glass. The assistant doing the ultra sound said he had seen worse curves than mine but that he had never seen a penis in as bad condition because of all the different twists and turns I have going on. My plaque is obviously large and very hard. But the good news is I have absolutely no blood leakage and my erection was graded as excellent. The outcome was that I am a candidate for either Xiaflex shots or excision/graft surgery.

Xiaflex would require multiple shots on consecutive days, 8 weeks apart, for a total of 4 treatments if I understood him correctly. There would be discomfort and bruising and I would have to do traction daily (which I have never done) but it is obviously much less invasive than surgery. It is also unbelievably expensive but they think my insurance will cover it, or most of it. He said 1/3 of men are extremely pleased with the results, 1/3 are somewhat pleased and 1/3 didn't benefit from the treatments. Nobody knows what effect it will have on my hour glass hinge because guys like me were excluded from the testing phase and there just isn't enough data out there yet.  Somehow I just don't feel confident that this is the answer for me but I have nothing to lose by finding out if my insurance will pay for it. I would hate to invest 8 months into these very expensive penile injections only to find out a year from now that I'm still sexually crippled.

Surgery will most likely be my choice of treatment. Higher risk but with a better chance of success if that makes any logical sense. The 2 weeks off work to recover concerns me greatly and the 6 to 9 months to a complete recovery is concerning as well. That's a long time, but not really any longer than the Xiaflex option. And "complete" recovery is the key word. He said I wouldn't really have any restrictions after the initial healing was doing well meaning I could get back to my very active life style as soon as I could stand whatever discomfort that may or may not cause. I would not need an implant as I was previously told because of the excellent quality of my "bent" erections.

As a side note Dr. Trost told me that I may as well quit taking Pentox and save my stomach. This is a comment that I'm sure will be controversial here, but I have to agree. In my condition Pentox is like pissing on a forest fire. It may have its place but I don't think it's doing much for me. I'm going to take a couple weeks and think everything over. If I decide on surgery the team can be assembled and ready in 3 weeks. I will most likely wait until fall anyway so I can remain active for the rest of summer. I'm really counting on wisdom from the board here to help me work out the best course of action.

I had to give them some extra blood on the way out so they can check me for AIDS, HIV and/or Hepatitis too make sure the nurse who stuck herself isn't going to die. I gave her a fist pump and assured her I'm clean so she can sleep well tonight. I guess in a way she's my "blood sister" now.

They told me not to leave the hospital until my erection was showing signs of dissipating and that if it wasn't in about an hour to tell them and they would inject me with something else to make it go away. After 3 shots in the trunk of my junk already I wasn't telling anybody anything, just show me the door! I drove out of that ramp as hard as a sailor and I continued to drive the next hour and ½ with my pants wide open and my bare naked unit throbbing in the front seat of my truck. I think that erection lasted about 4 ½ hours and now, almost 8 hours later I'm still half hard.

My wife will never believe it when I get home.....

Nordicz

Knight,

Nice in depth description of your day. Everything you stated is consistent with the exam and counseling provided afterwards. I did not have the same complications as yours but not to terribly different either. I am very happy that you were able to get an proper exam by a specialist in my opinion.

I'm not sure on what direction you are leaning for treatment but I can tell you this the hard part (no pun intended) is over. That exam is probably the most humbling thing I've experienced. As you can tell his staff man or woman are very professional and want to provide the best treatment possible.

For those who may not be aware a rough quote for the Xiaflex treatments I got were $50,000 for the medication alone not to include the multiple office visits. I chose excision and grafting for my condition and the total after surgery was aprox. $27000  additional follow-up is optional if all is well.

I felt I would ultimately lose more time from work by getting the injection regiment. I've stated this in my thread that the first two weeks should be inactive. I was pretty uncomfortable for the first part of the third week with commuting and sitting at my desk. But at day 26 I feel pretty much good as new. I've been mowing lawn, walking the dog for a couple of miles and doing normal chores for two weeks and occasionally feel an ache but it is very tolerable. I have little doubt I'll be in the saddle with my wife at the six week mark give a day or two for sensitivity. She has it marked on the calendar.  :o

As stated the risks can be higher for other issues but at this point I have no ED problems and can obtain and maintain an erection at this point. It was a little painful initially but that has subsided in the last week.

I know your going to take time to evaluate the options. I can't recommend one or the other. It is a personal choice. I am an analyst by trade and something that you stated and I was also informed on were the conditions of the Xiaflex study. What I personally question is for conditions outside of the controlled study, the results are mixed. This was the factor that drove me to my ultimate decision of surgery. The baseline was men with a curve( dorsal I believe) of less than 45 degrees the results were the percentages you provided, 33% did not benefit. When you take into account a side curve and a twist as you have described I would be very surprised if that satisfaction factor did not decrease significantly. It is a more complicated situation without documented results. That being said I am only providing a point of view on one option.   No matter what your course I wish you the best Knight. I'm very happy for you that there is a brighter future in store.

Z

Knight

Thanks for your continued support Z! Glad to hear you're healing and getting back to some normal daily activities!

Just out of curiosity, how many injections did you get for the ultra sound? Wow! Talk about WOOD!

I guess I was taken back a bit by the 6 to 9 month recovery statement. I'm not sure what I was expecting, but if sexual activity could be resumed in 6 weeks I was thinking that the recovery process would be about over by then. Not a deal breaker, just more to swallow.

It's not like there are many options anyway!

And I agree with you 100% on the Xiaflex treatments. It never really was much of an option in my mind but Dr. Trost kept bringing it up. I don't think he was pushing me in that direction, he just wanted me to completely understand there were alternative options to immediate surgery. The fact that nobody knows if it will have any effect on hour glassing is enough to convince me it's not the answer for my condition. Plus, I agree with you on the money and all the trips back and forth to Rochester.

Nordicz

Knight,

I only got one injection, and I had a serious scratch the streetlight erection before the "cute"lady nurse even touched me. The injection took a few hours for my erection to subside. As my lovely nurse suggested "I walked it off".  

I was intimidated by the 6-9 month statement also. But I suspect that is a estimate of full recovery. When the doctor says I can be intimate again in 6 weeks with my wife, to me that is full functionality if not full recovery. It may be a cautionary statement meant to explain that it takes time to heal. Essentially the penis is dissected to some extent,then re-assembled. I will say that today I feel great. My external stitches are gone and those areas are less sensitive. As of the last couple of days I can feel the internal stitches healing but no real discomfort at all.

In my consultation with Dr. Trost- I asked him very point blank if he was in my position what would he do. He said he would probably do the Xiaflex treatment first then re-assess his condition. I asked him why, he stated he is conservative in nature and has always viewed surgery as the last option due to the possible risks. I also asked him his opinion on the chance of satisfaction I would have if I did the Xiaflex treatment knowing that my curvature was greater than 65 degrees he could not answer that question for me other than he stated that the treatment was effective in the case study conducted.  Not enough of an endorsement for me. What I found valuable in that exchange is he provided all options and depending on my decision he was willing to go the direction of my decision. His openness and honesty where very critical in me making my decision. I have not regretted it to this point.

UrsusMinor

Quote from: Knight on June 30, 2014, 08:05:13 PM
As a side note Dr. Trost told me that I may as well quit taking Pentox and save my stomach. This is a comment that I'm sure will be controversial here, but I have to agree. In my condition Pentox is like pissing on a forest fire.

Haha. I actually doubt you'll get much disagreement here. There is evidence that Pentox is effective at some degree of reversal of Peyronie's, but it seems to be a much more modest effect than the sort of condition you are describing.

Thanks so much for sharing all the the details. It was difficult for me to imagine what it would be like going in for such a consultation, and you gave a marvelous description.

I also admire your attitude. I understand that people on this forum have a right to be depressed, but I get tired of the Wo-is-Me tone I often hear. I suspect that your optimism and upbeat take on things will help you respond well to the surgery. Wish you all the best!

james1947

Knight

Thanks for the time you invested giving us a much detailed report.
It will definitely help others while trying to find a Peyronies specialist.
Wish you success with whatever road you will take.

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

LWillisjr

Quote from: Knight on June 30, 2014, 08:05:13 PM

Surgery will most likely be my choice of treatment. Higher risk but with a better chance of success if that makes any logical sense. The 2 weeks off work to recover concerns me greatly and the 6 to 9 months to a complete recovery is concerning as well. That's a long time, but not really any longer than the Xiaflex option. And "complete" recovery is the key word.

Complete recovery is the key word. My wife and I were having sex about 6 weeks post surgery. Hard erections were still a little sore and I had a bit of tenderness on the circumcision scar. These slowly went away but it was roughly 6+ months before everything felt natural again.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

emasculated

Interesting info & interesting doctor. I would go with the implant. Erectile function might be good but it's still a form of impotence if the deformity is that extreme so that sex is hard or impossible. Implant is more reliable solution.. and less worries about long term risks and consequences. And implant doesn't make it shorter & possible ED as opposed to the other surgeries. But that's just what I'd do. Good luck with whatever you decide!  
"Without health life is not life; it is only a state of languor and suffering - an image of death."

Nordicz

LWillisjr,

I'm comforted hearing that it takes 6 months or better to feel back to normal. Though I am only at the 4 week mark since surgery I feel good overall. Yet the circumcision scar is sensitive as is the head of the penis. During the last two weeks a good tight pair of underwear have been my best friend. Everyday there is improvement. What I have found interesting is in week 4 it seems like any aching is the internal part of the penis healing. I'm not sure if others have experienced this but when my bladder gets fuller and a person gets the sensation to go to the bathroom I get uncomfortable. I assume that as the urethra gets fuller and  the penis swells and stretches making that sensation more pronounced. My wife really wants to get back into the saddle so I'm doing the best to heal properly and come back better than ever.

z

CalSF

Hi Knight, I was surprised to hear that the Xiaflex injections would be 8 weeks apart.  I'm a patient of Dr Tom Lue at UCSF and I've already begun Xiaflex treatment.  My treatment started on a Friday...The next scheduled injection was the following Monday and the Friday of that week and then the Tuesday of the following week.  I did the Friday treatment, but my immune system must have been low and I wound up getting sick over that weekend.  So, Dr Lue skipped the Monday injection so I had the next one on Friday.  He stopped it there to see how I was responding, which was good!  It dissolved some of the scar tissue and the hourglass shape on the left side disappeared.  The right side is still present, so he is going to inject again, closer to that side.  I'm still using Pentox, one tablet, three times a day.  One thing you might want to consider is using two tablets, three times a day...That's what Dr Lue had me do once I started seeing him and it made a huge difference.  My curve was 90 degrees down and to the left.  After a couple of months at that dose, the curve was reduced to about 20 degrees or so.

Knight

Thank you for your input everyone. Some interesting things to consider over the next week or so before I make my finale decision.

CalSF - I'm very happy you are having some success with the Xiaflex injections. I agree that we are getting conflicting information from our doctors and I'm sure this is because the treatment is so new and everyone is still learning about it. Not only does the timing for the injections seem way different but I was told the cut off for Xiaflex to be an acceptable form of treatment was for guys with a 65 degree curve or less. In that regard I was right on the edge, but due to the fact that I have multiple curves and a twist made me believe surgery would give me the most hope. Were you at 90 when the treatment started or had there already been some correction due to the additional Pentox?

CalSF

The high dose Petox, 2 tablets, 3 times a day, did an amazing job on the 90 degree downward curve.  The Xiaflex is being used to fix the hourglass issue.

LWillisjr

Quote from: Nordicz on July 02, 2014, 10:05:37 PM
My wife really wants to get back into the saddle so I'm doing the best to heal properly and come back better than ever.

z

Nordicz,
I would encourage you to follow your doctors post op instructions. Dr. Levine told me no sex for the first 6 weeks. But I had excision and grafting surgery. It could be different for other types of surgery. He wanted us to take it slow and easy. He did want me to do gentle messaging 10-15 minutes per day. And he said my wife could 'help' with the messaging starting 3-4 weeks post op.

There have been accounts of guys on this forum where they rushed into intercourse saying "they couldn't wait". But they end up having issues. In one case a guy who had a plication procedure ripped a stitch that hadn't had time to heal properly. So again I can't stress enough to take it slow and let things heal properly. You will be happily satisfied with the longer term results.

Les  
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Nordicz

LWillisjr,

I apologize if I left anyone with the impression I was going to not follow the post-op instructions I had gotten. Les they are consistent with Your situation no sex till at the earliest the 6 week mark. I think I'll be saying the same thing you emphasized, I am patient enough to wait and have intercourse when I'm properly healed and will not injure myself further. It would be great if it was the six week mark but it could be week 8 or 12 I'm not sure. I'll be at the 5 week mark on the 8th and if today was the blessing day, I would not be able to have sex. There is way too much healing going on and oversensitivity in the head of the penis and the circumcision stitch line. In short I'm with you follow the doctors instructions.

The good thing is my wife is excited for that day we can be intimate with each other.

Z

Ronbb

Z

Just wondering  about the decision on the circumcision.  Was it necessary  as relating to the surgery?
I have Peyronies with a 30 degree to the left, and if I had surgery I can think of nothing worse than being circumcised. I am new at this having just discovered it last August and new to this forum. Just trying get all the information I can from the members in this club that nobody really wants to belong to.
Thanks Ron

emasculated

@Ronbb: This topic is about the excision / grafting procedure which is the most invasive and risky penile surgery imaginable. If you are queasy about a circumcision you need to read up on this procedure and get better informed!
"Without health life is not life; it is only a state of languor and suffering - an image of death."

Nordicz

Robb,

To answer your question for that particular surgery a circumcision would happen. I was circumcised before the disease. The procedure incorporates the incision on the old circumcision region and then is stitched at the end. Emasculated is correct to a large degree this surgery is the most invasive and has high risk.

If you have been able to read a lion's share of posts most will say surgery should be a last resort. What pushed me was the inability to physically have intercourse with my wife.  I had the disease for a period of time and sure I had a curve but it never interfered being functional. When my curve drastically changed is when I was left with few choices.

Z

UrsusMinor

Quote from: Ronbb on July 05, 2014, 07:24:04 PM
... and if I had surgery I can think of nothing worse than being circumcised.

Really? I must be misunderstanding how you phrased that. Or perhaps you just adore hyperbole.

I can imagine dozens of things without even stopping to think hard about it.

Check one. I would rather:

a. [ ] Have Peyronie's Disease
b. [ ] Be circumcised


And that's just one example.

Ronbb

Thank you for your info on this. I will continue to read up on all the different forums and should be able to form a more educated question in the future.

Caesar

Ronbb, don't worry about circumcision at all.

I was circumcised when I was a kid (phimosis) and it is no big deal. Well, yes, I remember having to wake up midnight and placing my bare feet on a bowl filled with cold water to end nocturnal erections haha. And I also had some stitch bleeding a bit one day, but nothing important.

Nowadays I really like having been circumcised: it's cleaner, you have less risks of infections and it looks good (well, at least it has done until I developed Peyronies Disease).
Age: 37
First onset: January 2014 (lasted 16 months) | Treatment: Q10 (ubiquinol) + Acetyl-L-Carnitine | Result: 15º curvature to right and narrowing at the base.
Second onset: January 2020.