UCPPS - Prostatitis, Interstitial Cystitis Forum

So I stopped my daily stretching regimen (about 45 minutes every day) and stopped seeing a pelvic floor specialist for internal and external work (a very reputable clinic) because after a year of that I not was getting good enough results. I would go maybe 7-10 days out of the month with 0 pain, the rest of the days were 3-8 on a pain scale (mostly right testicle).

So I tried a new routine of Elavil 25mg, any accredited quercetin product 1000mg, using a pelvic cushion for work, and frequent masturbation (at least 5-6 times a week). And for the past month after ramping up to 25mg Elavil I have gone 28 days with 0 pain. I don't quite understand what's going on. I'm thinking either I truly have more of a neuropathic pathology than muscular or there's some kind of mental aspect, like my mind realizing that I'm not making the pain a big life issue by seeing specialists once a week and spending hours upon hours stretching and trigger point hunting. Thoughts? Thanks in advance.

[admin note: Cree reported a big improvement using any accredited quercetin product here: viewtopic.php?p=52150#p52150 ]

Which parts of the routine are new? Other than not seeing a specialist and stretching.

Hi there: the new parts are I started taking any accredited quercetin product and Elavil. Started at 12mg and moved up to 25mg on the Elvil. I take the any accredited quercetin product 2x times a day as suggested. Using the pelvic cushion is new as well. Nothing else other than that.

So when you do several different things at once, as you have, it becomes impossible to work out what's making the difference.

I'd guess the any accredited quercetin product is improving symptoms in your case, but it's not certain.

Hi guys:

I mainly have pain in the right testicle, testicular pain during sex and sometimes testicular pain during ejaculation. The past three months have been very good, but I'm wondering why the testicular pain appears to be random. For example, in any given week, I will be COMPLETELY pain free M, T, W and then all of a sudden on Thursday, I will slowly feel some tension in my pelvis arise in the morning and then will have significant testicular pain for the rest of the day and evening. Then its gone the next day. The next week I may go pain free M, T, W, TH and then get hit with it on Friday. Its even happened on a Saturday or Sunday, which is a less stressful day because I'm not working. (I have a 3 hour daily commute in addition to working 8:45-6:30 M-F). I cannot explain why this happens, any ideas? I do a daily routine of either relaxation or stretches.

Thanks!

The fact that the pain is coming on towards the end of the working week may be a clue. How is the pain when you go on a vacation?

Thanks Webslave:

The last vacation I took was for 10 days and I had one day of pelvic pain, so close to the same ratio as a typical workweek. To add to the bizarre nature of this cycle, I've gone M-F on very stressful workweeks with no pain at all. (For example, I may be interviewing for another job once or twice that week.) But one could possibly argue in this instance that I was so focused on these activities that my "pain monitoring" became irrelevant.

Maybe I'm just surfing on a threshold of pain always near the mark between pain and no pain and some little thing, conscious or unconscious, brings me over the top and activates the pain? I believe HITP touches on this issue a bit. I have to somehow lower the bar...

I suggest keeping a diary noting physical activity, diet, stress levels, any heavy lifting, extensive sitting and whatever other parameters you can think of. Put it all in a spreadsheet and note pain level for each day as another column. That could help you to tease out the key issues.

Great idea, thanks!

Hi Cree,

would be great if you could provide an update once you know more how/when your pain comes.

I have absolutely pain free days (earlier it could be up to several months without any pain (0%!) – at the moment best is one week) and then I have days with very high pain. I know where it comes from – it is totally a psychological thing – I am afraid pain or have emotional problems – here comes the pain! I am quite convinced that I don't have anything physiological – otherwise it wouldn't make sense that I have these periods of 0 pain.

I am looking for people who also have a similar problem – so we could have one discussion purely on this issue – for example physiological therapy or osteopathy or acupuncture etc. will not be the solution if the pain is psychosomatic.

Things that definitely can help are meditation or other things to make you relax. But that's easier said than done. So far nothing could help me long-term.

Best,
Christoph

Hi Christoph:

I think we are both engaging in a self fulfilling prophecy. We know that stress can cause pelvic pain and when we don't have pelvic pain we are hyper-vigilant about the pain returning and the stress that the hyper-vigilance creates leads to pelvic pain.

I think one of the ways of attacking this is adopting an "acceptance paradigm", and Webslave has discussed this before. For example, you could try to completely ignore the pain and engage in any activity that you would engage in if you didn't have the pain. You would need to do this over and over again, no matter how much pain you were in at the time, in order to send the message to your brain that the pain is no longer relevant.

Your brain might eventually get the message that having pain is no longer relevant and worth its time and it wouldn't create such an attachment to the absence of the pain or create pain-related anxiety.

For purposes of full disclosure I have obsessive compulsive disorder and have been treated by a world-renowned expert on a special type of OCD where there is no observable ritual, sometimes called "pure-O." I believe this is one of the reasons I can't fully "let go" and become completely pain free, because my brain obsesses about the pain when I'm having it and the absence of it. Do you think you may also have an obsessive type personality?

One thing I cannot explain: before I went to physical therapy and had an advanced understanding of CPPD, I had an episode of pelvic pain in 2008 that lasted about 8 months. But the pain completely disappeared after seeing a pain specialist who performed a testicular exam and ruled out testicular cancer, hernia, and basically any other pathology. I was pain free for about 6 years. At that point in time I did absolutely nothing to treat the pain, no PT, no relaxation, no meditation, no therapy, no medications, it just disappeared!

This issue is very complicated. I cannot say for sure at this juncture whether my random pelvic pain is purely psychological, or based on physical symptoms. But it seems to be a catch 22 situation: if I focus purely on the psychological, I may be neglecting a physical source like stubborn trigger points or areas of abnormal tension, but if I focus on the physical as well, my brain tends to enter an obsession mode where all I think about it pelvic pain, and that creates stress, which feeds the pain...

Chris

@chb81, we are two now. And I bet 90% of people here with CPPS are the same case as we are however with different symptoms and different reactions to stress/ emotional load.

I suffer from the same although you are luckier than I am because I never had few asymptomatic months... However, after understanding that this is purely psychological, my pain became a little twinch of what it used to be before, I was suicidal man! Now I live my life and don't give a fk even if I feel any pain. Check my signature and my older posts. Also please read Ezer's story on this site, he provided invaluable information to all the pelvic pain community across many forums and boards. You could find your answers in his ideas there as well.

I agree with the assumption that psychological aspects, especially anxiety/depression related elements play huge role in the struggling with CPPS. The longer you are struggling with CPPS the more the psychological components might become dominant or being a sole driver in this difficult road. But - a lot of us did have some somatic precondition/incident, like inflammation, clenching of pelvic muscles at sex, sedentary lifestyle etc...you name it all, Without these coincidence our problems wouldn't be manifested in the form of CPPS (we might have other psychosomatic problems). Trigger points and anxiety mechanisms are two sides of same coin and must be dealt with simultaneously...Approaches concentrating on only one part of this havoc (urologists prescribing atb, alpha blockers etc.) as well as pure mind centered approached seem to me reductionist (although they might deliver improvement). W/A are right with searching for combination of body (trigger points) and mind (paradoxical relaxation), but I intuitively feel that paradoxical relaxation is not the one and only way how to approach mental side of this problem, our personalities, emotional and cognitive styles are pretty different.

euro, if this is purely psychological ANY physical attempt to cure this would contradict the very nature of this illness/pain syndrome strategy.

Hi Carbonevo:

How did you come to the conclusion that your pain is 100% psychologically induced and how long did it take to come to the realization?

I gave TMS/Sarno a shot for about 6 months but did not improve.

Regards,
Chris