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 Long term issues, new doctors...how do I best explain it??? 
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Joined: Mon Aug 24, 2015 9:03 pm
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Post Long term issues, new doctors...how do I best explain it???
Hi, I am 35 years old and have had testicular pain issues since I was around 15. Around the time I turned 20, it got pretty severe. The process of finding out why has been a nightmare. I have seen various doctors who have all thought different things. I have been on all the medicines (NSAIDs, antidepressants, antipsychotics, opioids, and experimental). I have had a variety of the more minor procedures and tests. My low point was when an urologist performed the prostate massage and I passed out from the pain, fell to the floor, and split my head open. Some doctors have been outwardly hostile towards me and frankly did not believe I was in the level of pain I claimed. The best diagnosis I have gotten thus far is pelvic floor dysfunction, cyst buildups, and occasionally chronic nonbacterial prostatitis. So a lot of the testicular pain itself is deferred.

I’ve been doing PT for pelvic floor muscles and today most of these I do on my own given this is a type of PT you can do on your own. I have had the spinal manipulation. I also use a TENS unit. For about 4 years, I was on a high dosage of tramadol. It did not give all that great of relief, but it did not ruin my stomach like NSAIDs (I have IBS), it did not make me feel high like stronger opioids, and it did not cause major mood shifts like many of the typical antidepressants. I made do with it, but I was not happy with the quality of my life. Pain still interfered with me being able to do the things I want to do.

Around 2010-11, I was closely following the clinical trials for a new medication, tapentadol. The reason for my interest was because its dual (and possibly tri) mode of action presented a potential candidate that could be superior at managing deferred pain and better at preventing breakthrough pain flares. A dual mechanism of action also presented the chance that less medicine would do more, and largely mitigate the rapid tolerance that builds with traditional opiates/opioids.

By 2012 I found a great PCP who was willing to prescribe it after spending a ton of time with me to learn my situation, researching the medication himself, and consulting a colleague of his. At the lowest dosage, it gave me pain relief to the point where pain stopped playing a limiting role in my life. I do not feel loopy or high, I do not feel depressed or that my mood is altered, and I do not feel like I am not myself. I am happy that I can do the things I want to do in life. I had been on this medication for three years at the exact same dosage, and it gives me just as much pain relief today as it did in 2012. Given the quality of life improvement is so significant, I have actively managed this medication responsibly and I am committed to my multi-modal regiment to manage my pain.

Now I am at the point where the doctor who I had a great relationship with has retired. The doctor I am seeing now has requested that the dosage be decreased to longer intervals. I have done this as per their instruction, but it is not working well because the intervals of dosing are longer than the time the medication provides the therapeutic relief. After reporting that the longer intervals have not worked well at all, I was referred to and am now scheduled to see another urologist, and I really am not sure how to best explain my situation.

I am happy with this specific medication at the same dosage that has been prescribed for the past three years…no more, no less. I really do not want to do things like more invasive tests/procedures, different medications, or more ‘trial and error’ that could easily backfire and reduce my quality of life. I understand that doctors need to be vigilante when it comes to prescribing this type of medication due to dependency/addition/diversion risks, and I understand why doctors are hesitant to prescribe this type of medication to younger persons, but I've lived life as a normal person for the past three years and I really like it. I want to stick with what has worked rather than risking going back to where I was before, as frankly, I was absolutely miserable.

How do I best convey this without too many specifics? Do you have any advice? Thanks very much for your insight.


Mon Aug 24, 2015 11:06 pm
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