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My PVPS story with reversal recovery journal


#41

Yeah I told him i’m interested in fixing the problem for good, not masking it.


#42

My son has been weaning off of Lyrica so that we can try Nerve Scrambler therapy (also known as Calmare therapy). Even with Lyrica, his pain levels are always at 5 out of 10. He is almost totally off Lyrica (working on this for about 4 weeks - was taking 100 mg, 3X a day), and now pain levels are at 6-7 out of ten. Lyrica was definitely helping him. He started on Lyrica in January because his pain management doctor thought it was time to switch off of Gabapentin. He is also taking Nucynta (50 mg) instead of Oxycodone (5mg in the mornings). He prefers Oxydocone, but his doctor did not like him to continue taking it for so many months.


#43

Sorry to hear about your son. Thankfully my pain levels are fairly low right now so we’ll see what Lyrica does.


#44

I have posted here before about Lyrica its a terrible drug and there was a facebook page trying to stop the drug. I tried it and it fried my brain and gave me evil thoughts. Also its a bandaid like lots of other drugs they give us but fixes nothing. Lots of all the nerve reducing drugs are bad. At the end of the day its whatever gets you by. I now stick to codein, endone, tramadol which are not good either and very addictive. Or somedays i just live in pain at least i know what i am doing and thinking correctly and not the drug controling my head. If i kept taking Lyrica i would kill someone maybe the person that got me this way and that is a bad thing. My problem even though i see a councillor is i have lots of hate towards the person who got me this way. I need to get over my resentment easier said than done.


#45

got my supplements and papaya powder. I ordered from the Amazon Prime link and it got here in 2 days. Mixed it in with water and a vitamin drink mixture and it tastes fine.


#46

What is the opinion on sex during this whole thing? If it doesn’t hurt me to have, is it helpful, hurtful, etc? In my head i’ve thought of things like “if i have sex, my brain will think i want to reproduce so it will make more sperm making the problem worse”. But I also could see how sex is a natural and healthy activity, keeping the equipment working can’t be all that bad, right?

Just wondering what the thoughts were, again assuming this isn’t causing me much if any extra pain.


#47

I had an appointment today with another Uro, Dr. McClung at Central Ohio Urology. Supposedly he is well regarded and has some experience. He didn’t seem super experienced to me. Basically nodded at everything I told him. He examined me and said that in his opinion there wasn’t any Epiditimytis so its probably a nerve issue. He suggested a cord block and if that worked, denervation. I asked him how many denervations he’s done and he said 15, which doesn’t sound like a very promising number. I am going to see another Dr. in Columbus, Greg Lowe in a week and a half. He is supposedly the expert in Central ohio for reversals. So we’ll see what he says.

He also said that the preferred order for treatments would probably be reversal, then denervation if the reversal wasn’t successful in reducing pain.

Sounds like i’m in for a long road ahead.


#48

These symptoms you mentioned here are classic chronic non bacterial prostatitis symptoms. Have you tried pelvic floor therapy, it would be worth it before proceeding with another surgery. I did pelvic pt for 3 months. I was always better for about 3 hours after the pt but then all of the pains would return which let me know it was a compensation not the problem.


#49

Interesting. Thanks, I’ll look into it. I haven’t tried it.


#50

@jsh Pelvic floor PT definitely benefited me.


#51

i think this week I am going to explore some alternative things…acupuncture and chiropractors among others. May look into pelvic floor therapy as well. Tried some exercises I found on a video. Not sure i’m doing them correctly, but might as well exhaust all options before doing anything surgical.

I really am still intrigued by prostate issues as well. Would like to get a Uro to rule that out as much as possible.


#52

Over the weekend I stopped taking Naproxen. Partially because my prescription ran out and the prescribing Uro has been difficult to get refills from, partially because multiple doctors have basically said don’t be on NSAIDS for any extended period of time. So I had the Chripractor appointment which of course didn’t seem to help at least then. The day after, Wed and then Thurs have probably been the most painful in the last 3 months. Pain levels probably at least 4 constantly. So I’m not sure what that means, if the Chiro made things worse or just because i’m not on NSAIDs anymore. Going back to the pain management doc (PA) today to get some opinions. Another Uro appointment this coming monday with a Uro who has been recommended a few times and supposedly is the “best reversal doc in Columbus”, FWIW.


#53

I found NSAIDS have a rebound effect with my body when going off them bad pain. Another is steroid injections in some of the blocks i had ,the bone arthritis pain is brutal, as well as no sleep and extreme hunger.


#54

today seems to be somewhat back to the level i was at earlier in the week. going on 150mg of Lyrica instead of 100mg


#55

Going to an acupuncturist soon…that’ll be interesting.


#56

well, fairly sure I am getting this thing reversed. About a month away or so. ICVR. This is terrifying.


#57

of course now that i’m scheduled and past the point of no return, i’ve had about 3 days of very low to no pain at all.


#58

The pain is usually somewhat cyclical with pvps congestive pain. I had a similar experience myself but after a year in pain I went ahead. Good luck whatever you decide.


#59

About 12 hours out now. Kinda freaky!


#60

Look at it this way…if you go in with low pain, your nerves are more ready for the potential assault than if they were already in the full-on position. Perhaps your mind is just relaxed and comfortable with the decision. Consider it a blessing and don’t look back.