members in less than two weeks I have may second appt with my Uro. I would like to know if there is anything the membership would suggest I try or ask about.
What i've had done to date.
Testing
U-Sound - confirmed Pey. One round shaped nodule half the little smaller than a pea about 1 inch from the base dead centre.
MRI - Lower back pelvic area - all ok some normal degeneration of spine for a 50 year old.
PSA Baseline - Score of 1
CBC - all normal
Total Testosterone - 8.8 Which put me in the very low "normal" range (8-25 being normal)
Pills
Uro prescribed
Pentox 400mg x3 daily Started March 24th
Cialis 5mg daily low dose x 1 daily (been on for over a year)
colchicine - had to stop after March 30th was wrecking up stomach (pains and bowel issues)
Supplements
L-arginine .500mg x3 daily March 20th
Vit E - 400mg once daily March 4th
Propolis 500mg 2x daily April 16th
Protocols
VED - very gentle 3 times weekly for 10-15 mins
Heat wraps - 2 hrs daily (mostly daily :) )
What I really need is some pain relief so I can function well and get some much need sleep at night. I toss and turn for a few hours get two hours of sleep then im awake again. I find Ibuprofen doesn't nothing. Ive tried nuproxcen and that does nothing as well.
How do I approach my URO for pain control without looking like im begging for narcotics?
What else can I try?
What else should I be asking my Uro?
Thanks all
Hello,
I would suggest visiting the Survival Guide Peyronies Survival Guide - Information for New Members - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,3180.0.html)
as it has a good section of things that you should know to prepare for the visit with your Uro visit.
Stabler67
Thanks Stabler, I was hoping for something other than that since from what i posted I covered most of that info.
Pentox is supposed to provide some pain relief. Have you tried any topical pain relief? I would just be honest with the URO. They will understand if you explain that you are in pain and the Pentox isn't reducing the pain.
Thanks Quack, I will post how it went on May 2. Fingers crossed
Just an update.
I saw the URO and he didnt really care about the pain and he fluffed it off. Im on Pentox and supplements thats all I need. Pain is in my head etc. He did say I should start Verapamil injection treatments I start that in May20. Im not feeling this URO is listening to me always seems to be in a rush.
Can you get your GP to prescribe something like Codeine Phospate?
I take it now and again when Paracetamol doesn't cut it.
My GP is the greatest. She has prescribed Tramadol which i hate gives me the shakes and I feel that any loud noise will send me through the roof. My GP wanted me to ask the URO if Lyerica might be a option. When I asked this the URO let out a small chuckle....seriously....then continued the verapamil story line. My GP has given me 30 tabs of perocet but I really dont want to use them. I mean look at what pills im taking now too many for my liking. Not sure when the PAV cocktail is suppose to start to work... im on week 6 now...nothing positive to report.
CMS,
I was on PAV, less the V for 4+ months and the only thing that Pentox did was give me headaches. So, I stopped. My URO then prescribed Viagra 50mg before bed. Took for two nights woke up with headaches both times because Viagra is known for headaches and I have stopped. At this point, My approach is going to be a completely clean diet with no inflammatory foods and doubling up on my typical Youngevity supplements for the next 5 months with VED, which my URO gave me and hope for the best before trying Xiaflex. I am sure Pentox has worked for people otherwise it wouldn't be so popular, but I don't think it is anywhere near 80% successful, which is what I would call a successful treatment. If the success rate is 50% how do we know the Pentox is what is resolving the issue?
Hey Quack,
Thank you for your reply. When it comes to treatments I feel that there is no 100% cure or 90% or even 50%. Everyone is different, I'm sure if someone posted penile castration worked for him someone else would post, " I tried it and didn't work for me" How is the inflammation diet going? Please PM or post what your doing. Maybe a link or a book etc.
CMS,
I am following Dr. Joel Wallach's nutritional program. Recommended reading for Dr. Wallach are a few of his books: Dead Doctor's Don't Lie, Hell's Kitchen and Epigenetics: The Death of the Genetic Theory of Disease Transmission
I have been on Dr. Wallach's supplements for 3 years, but I haven't been at the full recommended dosage because it is expensive stuff. Having a gluten sensitivity, I am gluten-free because gluten is inflammatory. I am starting complete elimination of all inflammatory foods next week when my next supplement shipment arrives. Those foods include all oils, but not butter, sugar, fried foods of any type, potato chips, etc., well done meats, which I don't eat anyway. Part of the reason for this is arthritis and a mild osteoporosis. I have two degenerative discs which may have contributed to peyronies by not having a rock hard erection, which my URO believes is likely. Dr. Wallach claims that you can regenerate the discs with proper supplementation. So, I am going hard core and hopefully this will have a positive effect on the peyronies and allow me to avoid Xiaflex.
Thanks Quack, i will look into this option also.
BTW I have started with sugar (added, pop, candies, cakes) etc. to eliminate. I started last Monday and I have lost 2 pounds already. (1 week) Dont "feel" any better if you know what i mean. This week i've select processed meats to add to my elimination process. Slowly i'll add more and see if i feel better.
Hi CMS, sorry to hear about your painproblems. I have had painproblems for a long time. I am on pentox, propolis, blueberries, slices oft ginger and curcuma every day, reduced sugarintake, green tea, moderate exercise every day and infraredlight-heat-treatment 2-3 times a week for about 20-30 minutes. My experince with heat is, that you have to be careful not to burn yourself and that you have to take breaks between the sessions, because otherwise the inflammation is not reduced. The last weeks i had a big painimprovement since i begann to use bio- coconutoil. Its also antiinflammatory. I do not know, if its the coconutoil or not, which is working, but it could be worth a trial. I also have read something about meditation to reduced inflammation. In my worst time my neurodoc for pain could help me with amytriptillin and lyryca to keep me functional. Both are meds, which slow down nervesignalspeed and help a bit with depression caused by so much pain. But be careful both could have an negative impact on your erectionquality. I hope, that i have mentioned some useful ideas and keep your spirit up.
Adam
Hi Adam, Thanks for your comments and advice I will look into coconut oil and see what I can find