Woke up bent after 13 hour plane flight

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thinkpositive

Hi everyone,

47 year old male, no health issues.  Was taking crestor for the last 6 months, started using rogain foam 6 weeks ago.  Eat a healthy diet that includes meat, vegetables, etc.  Exercise weekly.  

I have stopped the crestor, rogain, and am taking multi-vitamins

Just flew to Europe and after arriving, woke up in the morning with a bent (left) erection.  This is the same direction I normally hang in, and have always been slightly tuned in that direction when erect.  I'm back home now after 6 days, issue persists and I'm concerned.  

I have no pain, no lumps that I can feel either flaccid or erect.

Cannot remember any trauma that could have caused this.  Have an appointment with a Uro on Friday.  

Picked up some Castor Oil today, C0Q10, and Vitamin E.  

Welcome any and all feedback... thank you

Paolo

Hi thinkpositive, thank you for registering, I hope you re-post after your visit to an urologist  :)

That is very interesting that you woke up with a bend, that is what happened to me, it is also interesting that it came on after a 13 hour flight, presume you were sedentary for the majority of the flight, I'm therefore thinking that your pelvic area had restricted blood flow possibly starting it off.
My job was always sitting for long periods of time in an office and I think it contributed to my peyronie's episodes, although I exercised a lot a sedentary lifestyle could be a correlating factor  :-\

Please post back after your appointment  :)
Paul (paolo)
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

thinkpositive

Thank you for the note Paolo.

After doing some more reading last night, I changed my appointment to another doctor for tomorrow, he is supposed to have experience with Peyronies.  

I took C0Q10 yesterday, along with some vitamin E, the Q10 gave me a morning wood, the Vitamin E sorta made me feel dizzy, will see if my body adjusts to it.

I also applied Castor Oil with a hot compress

The only injury I can think of is my 2 year old son kicking me when we were playing.  I cannot think of anything that happened sexually.

There is also a clinic in town that offers Shock Wave Therapy, what is the general consensus on that as part of the treatments?

From what I can read so far in here, if I am diagnosed, I am going to want to approach this depending on which states, from various directions.

Accute Phase:

Oral:
400 mg of Pentoxifylline, 3x daily
1000mg L-Arginine 2x daily
400mg Vit E 1x daily?
CoQ10 300-600mg 1/day or Ubiquinol 200mg 1/day
Daily Dose of Cialis?

External
Traction device
Castor Oil
Add Shock Wave Therapy?


Can someone help me sharpen up my treatment notes?

seekinginfo

Interesting about the 13 hour plane flight. As I think about how this came to be, there was no obvious injury and nothing I could associate with Peyronies Disease.

Was long, sedentary inactivity a possible cause? Mine seemed to develop over a period of a few months during a move from the midwest to the east coast where I would make non-stop 12 hour drives a couple of times a week for 3-4 months.

Was it the workouts I was doing? I was heavily into to spin classes and stationary bike training, often an hour at a time 3-5 times a week. On several occasions after an aggressive session, my genitals would "fall asleep"- basically
numbness that resolved after a few minutes off the bike.

Could it be the long motorcycle rides with my crotch basically jammed into the same position for lengths of time?

Or maybe a tailbone injury that I suffered when I went to sit on a chair that rolled out from under me. No fracture, just a very tender and sore tailbone for 3 months.

All of these things seemed to occur during my Peyronies Disease "discovery" period.

No real ED issues at 61, but I keep wracking my brain trying to think of things that may have initiated or exacerbated my Peyronies Disease. Not that knowing what may have caused this will provide some unique path to resolution, but I remain curious as to the cause and effect of this. I've got about a 45 degree bend to the left, originating at what appears to be a dent or indentation on the left side of my penis about 1.5" from the base when erect.

Seeing a urologist today for a follow up who I had seen 6 months ago and prescribed generic viagra- we'll see where this leads. The doc was listed on the Xiaflex site...

Paolo

Quote from: seekinginfo on March 22, 2018, 05:22:28 AM
Was it the workouts I was doing? I was heavily into to spin classes and stationary bike training, often an hour at a time 3-5 times a week. On several occasions after an aggressive session, my genitals would "fall asleep"- basically
numbness that resolved after a few minutes off the bike.

I was also doing, what I now know was 'excessive' exercise rowing 10-15'000 metres a day for 5 days a week along with my sedentary job I think it, along with a stressful job pushed me over and BAM, peyronie's.

Paul (paolo)  
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

thinkpositive

Playing with my son today, I realized very quickly that he inadvertently kicks me all over my body and its very possible he nailed me the wrong way.  But having read a bit more about how the Tunica comes to get damaged, I might not have been fully erect the last time my wife and I had sex or I took care of myself.  Like many, no exact cause... no pain.  For all I know, this has been quietly going on for months?

Self inspecting today, flaccid, I can see something misshapen in the base on the left side.  It's what goes on to form the dent, and I estimate that I am bent left when erect by approx 20 degrees with the downloaded protractor.

Still wonder if there was a connection with my flight and all of a sudden being so acute.  

Tomorrow I am meeting with 2 different specialist in Bangkok.  I'm very curious about what each of their recommendations/diagnosis will be.  Do I have peyronies or is it something else?  Is there anything else that can cause a sudden curve and dent?  Nothing I can find online.

I'm also glad I took a picture erect when I first found this a week ago, if they prick me I can certainly compare a week later.  

If it's peyronies, then I want to hit the ground running with a program, knowing there are so many options and combos and some work better for some and not for others.

Aside from the hospitals, there are some clinics and one of them offers shock wave therapy.  I wonder if this therapy is appropriate in the accute and or stable phase?  

Traction or vacuum?  

Rubbing Castor Oil 2 times per day - want to find more info about this

As per the forum:
400 mg of Pentoxifylline, 3x daily - worried about side effects and how long will I have to take this?

CO Q10 - 200 - 400 mg daily divided into 2 or 3 doses. (If over 40 yrs old, consider substituting the more expensive Ubiquinol)

Acetyl L-Carnitine 1.5 - 3 grams per day divided into 2 or 3 dose

L-arginine 1.5 - 3 grams per day divided into 2 or 3 doses

and Cialis Daily?

My notes for the doctors visit:
Doctors visit:
* Give you a hands on examination to check for plaque (scar tissue)
* Order or perform a duplex Doppler ultrasound to check plaque and blood flow.
* Prescribe Pentox and an ED drug along with over-the-counter, L-Arginine.  The combination of these 3 items is referred to as a PAV cocktail
* They would be open minded and supportive of using therapy such as a VED or traction.
* They would consider surgery a last resort after a year or more of other treatments failed, and mutually satisfying intercourse was difficult.
* They would also consider injections to be a last resort.
* Ask your doctor for a complete blood panel including Vitamin D, total testosterone, free testosterone, estrogen, and PSA testing.  The information in these tests will be necessary to make decisions about your treatment plan.
* BPSFL measurement

betterbend

Hey Think,  your plan pre-visit sounds good, and you sound like you are armed with good questions. Injections should be the second to last resort.  Surgery, which is the gold standard for treatment, also is the most risky. That is the last resort. For injections, there is verapamil and Xiaflex.  I think verapamil is used if you are in active state to help keep the condition from worsening.  I think I remember my doctor telling me that 50% will worsen in the active state with no treatment.  With verapamil injection that number drops to 15%.  Xiaflex is used when you are stable for 6 months and no calcification.  

I would also recommend changing your L-arginine to L-citrulline 1500 mg daily.  l-citrulline converts 100% to l-arginine in the body, because it bypasses the liver metabolism.  70% L-arginine converts to l-ornathine, which is not helpful for vasodilation.  You have to take about 4500 mg of L-arginine to get the same dose as 1500 mg of L-citrulline.  Once you start getting up that high with Arginine you get some side-effects like gastric upset.
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

thinkpositive

Thank you, I have updated my notes regarding L-citrulline

And thank you regarding the Verapamil injections, I didn't realize they were for the active phase but now a lot of things I read in the last few days clicked.  

Paolo

If you can buy pure L-Citrulline powder, not L-Citrulline Malate, Malate is malic acid and very bad for teeth!
Or you could use L-Citrulline capsules.

I use pure L-Citrulline powder from Doctor's Best brand. The gym community prefer L-Citrulline Malate for pre-gym workout, that is not necessary for your penis lol  :)  
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

TonySa

Betterbend, I'm curious where you found verapramil injections are for the acute phase as I've never heard that.  Also, I think many docs consider xiaflex as the only FDA approved treatment a first line treatment.  What are you thinking precedes xiaflex, pentox? Thxs!
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

betterbend

Verapamil inhibits fibroblast activity as well as cellular proliferation, which is the scar is forming; i.e the active phase.  The Levine abstract indicates it can be used on stable patients too, but the article is from 2002, long before Xiaflex was approved.  The Bennet/Guhring/Mulhall abstract is from 2007 again long before Xiaflex.  Data in this article shows that only 22% worsened in the active phase, 60% stayed the same, and 18% improved.  That is vs the general estimate of untreated patients at 50% worsen/40% stay the same/10% improve.    

Verapamil is not FDA approved for Peyronies.  A doc can go off label if he chooses to.  The label for Xiaflex indicates stable disease for a period of six months, plus some other criteria.  If a patient is in active phase and wishes to treat a little more aggressively than just orals and traction, Verapamil is an option.  It could take up 12-18 months to stabilize, so it might take as long as 2 years before Xiaflex can be started. This is an earlier treatment option for some patients.  However, like Xiaflex, I would only do it with a doc who has done it successfully before.  I think there is skill in the injection.

I have not done a whole lot of research into pentox, my initial impression was it was most helpful for pain, which was not an issue for me, so I stayed with what I was doing.  I originally was going with Verapamil because I was early in the disease when I was seen by my doctor, only 3 months in.  However we went for approval for insurance for Xiaflex too.  It took so damn long to get it approved (6 months), I just went with Xiaflex.  



https://www.nature.com/articles/3900917

http://www.goldjournal.net/article/S0090-4295(07)00277-4/fulltext
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

thinkpositive

Just got back from the Doctor at Bangkok Hospital.  Nice guy, studied in the USA, knowledgeable and confirmed that he felt 2 hard areas (one small one on the side and one small one on top).  No ultra sound.  

His professional opinion was that there was nothing I could do but wait,  take Vitamin E.  That taking:
- 400 mg of Pentoxifylline/Trental, 3x daily - worried about side effects and how long will I have to take this?  
- CO Q10 - 200 - 400 mg daily divided into 2 or 3 doses. (If over 40 yrs old, consider substituting the more expensive Ubiquinol 100 or 200?)
- Acetyl L-Carnitine 1.5 - 3 grams per day divided into 2 or 3 dose
- L-citrulline 1500 mg daily (L-Citrulline powder from Doctor's Best brand)
- 400mg Vit E 1x daily
- Low dose Cialis
Was an old idea and that it didn't work...But could make someone feel better.  That I should wait and see what happens and then there is the surgical remedy, that Xiaflex was not available in Thailand.  (I will fly to the USA or Europe and find a great doctor if it comes to that)

I felt like his idea of "work" was 100% fix.  So I questioned him a little further and I think he agreed that the Trental could stop the progression, but no guarantee of that.  In his defense, he probably doesn't want to prescribe something and then have someone come back and say it didn't' work.  There are plenty of unrealistic people in the world who could come back and make a headache for this guy...

He also didn't' seem to keen on the traction device, saying that a lof the studies were biased by the manufacturer.  

He's not a bad doctor, probably an excellent one, but I feel like I should see a few more doctors in town and see what their attitude is.

I had to special order the Trental at the local pharmacy.   It was around $30USD for a box of 100.  ill start to take this when it comes in 3 days.

I have another doctors appointment tomorrow morning, will look forward to what their ideas for treatment during this active phase.

Welcome all feedback...