Whats new? (major flare-up after nearly a decade)

[Hacksquat]

Hi,

I was active on this forum around 10 years ago, when I had my initial bouts with CPPS.
First onset was 2006-2008, with a long remission in 2008. Then from 2009 to somewhere around 2011/12, I was symptomatic once again.
My symptoms faded during 2011/12 and got gradually better with longer and longer periods of relief. I actually don't even remember when I stopped thinking about it anymore but I guess my remission started in 2012.

I have had some minor flare-ups since then, but nothing like my initial symptoms. These short (a week or so) and far in between flares have mostly brought on a bit of frequency, feeling of soreness around pelvis muscles (most often my abs and abdominal wall). Also something that always comes along with a flare, even these minor ones, is the feeling of coldness in the pelvic region. A feeling that comes from inside and has no connection to weather conditions or other external cause.

Fast forward to two weeks ago, when I started to flare in a major way : (. Urethral burning, frequency, variable flow in my urine stream, discomfort and soreness. Cold genitals and a dull ache in the lower abdomen and perineal area. Pretty much the exact same feeling as with my previous major onsets in 2006 and 2009. UTI-like symptoms more or less.

I can't really say what set it off this time. Possible reasons can be any of these:

1. Stress? Yes, possible, but I've experienced periods of high stress for the last 8 years as well without flaring.
2. Cold weather and sitting on a cold carseat on the day of the onset? Happens from time to time even though I try to avoid it. Has not given me a flare-up the last couple of years either.
3. A stubborn lowgrade common cold (not Covid) with some sore throat that waxes and wanes.
4. Bad sleep, had worked nightshifts before the flare which always makes me hormonally imbalanced and tired. I have also always worked shiftwork, so that's not new either

Anyhow, the first week I managed to keep calm, hoping that it would resolve by itself. After that anxiety and catastrophizing has increased and it is now something I need to try and take control of.

I visited a local GP the other day, thinking that it is important to start all over with diagnosis since its's been so many years. Even though the symptoms are the same I need to get properly evaluated and diagnosed all over again. CPPS is after all a diagnose of exclusion. Anyway, he did a DRE and the prostate felt normal in terms of size and elasticity and I was also not very tender. Had no discomfort when he palpated it. Also my urine analysis came out all clear, no bacteria. PSA was low and also CRP (5 mg/l) so no signs of a major inflammation of the prostate. Next I will be visiting a urologist for a more in-depth examination, including TRUS and examination of expressed prostatic secretions.

However, I will not touch any antibiotics this time unless they find pathogenic bacteria. Even if they find commensals like Streptococcus or similar, they found that also in the past, I will avoid the pills.

So, if it is the old CPPS that has come back, I will try to start all over again with the protocol I did in the past. I then did stretches for pelvic health, HITP-stretches plus a few more. I also did some pelvic floor PT, but mostly external as there are no PT's willing to do much internal massage in Sweden. I never really got the hang of internal selfmassage either, so both times in the past I got into remission basically without doing the TrP-massage, at least not internal.

Important of course is also to control and decrease anxiety over this. At the moment I get by in the daytime, but my mind is playing tricks on me when I'm in bed trying to sleep and at this time I have a hard time controlling it.

1. What else is new regarding treatment of CPPS? What has happened in the last decade regarding preferred medications and protocols? Diagnosis?
2. Is Elavil still the preferred choice of medication for pain management in CPPS? What other benefits does it have? I got a prescription for it in the past but never tried it since I was taking Mirtazapin (Remeron) in 2009-2010 and didn't want to mix the two.
3. For controlling anxiety if it gets too tough, what other options other than benzos are recommended?

I must also add that when I finally got into remission back in 2011-2012, I did no longer do much self-treatment, not much stretching or massage. At that point I tried mostly to practice positive thinking and tried to accept the condition and that it could be lifelong. Have to start all over to try and come back to that state of mind, however hard it is.

[Paulr83]

Sorry to hear. I'm a newbie so I won't be much help. But I have your symptoms almost to the letter. The genitals are the worst symptoms physically and mentally for me. Anyway hang in there you're not alone.

[webslave]

Dropping all self-treatment, as you have done, can lead to an eventual relapse.

To answer your questions:

1. See the research forum. Things like shockwave treatment (if you can get it) work. I see it as another way of resolving muscle tension. No actual new drugs.
2. Elavil is still one of the commonly prescribed drugs. It's a mast cell protector and muscle relaxant, and subdues nerve pain.
3. Diaphragmatic breathing is the best non-drug approach. There are books on how to use breathing to control anxiety. There are also some other substances people use; you'll have to search the forums to find them.

[Sleeper Service]

Sounds a bit like mine - major bout from 2006 to 2009, with symptoms tailing off and life generally being pretty good in 08/09 followed by remission until 2014 then bouts of 18 months on and 18 months off/pretty good. In the latest one of these and without jinxing things it seems to be following the same pattern.

I've had surgery a few times but not sure it's related although could be chicken and egg (that said I didn't need any this time and probably in all honesty didn't in my second). Hopefully will settle down long term but you never know.

Kind of got my head round it and each bout is a little easier to manage than the one before. I keep active, run, bike, and play music. Quercetin, MSM, relaxation, hot baths and time seem to do the rest.

[Hacksquat]

Thanks for your answers!

Elavil is still something I consider using. Some weeks I control anxiety quite well but at other times I struggle. It follows the symptoms of the CPPS quite closely. I tend to get too optimistic when I have a better day and then I fall heavy when symptoms worsen.

About dropping self-treatment, that´s true to some part, since I stopped stretching. I have still kept other hacks in my life to try to avoid flare-ups, like lessening frequency of sex, avoiding sitting and so forth. Obviously it wasn´t enough though .

I am now three months into this flare-up. Symptoms shift a bit, but the main ones are urethral burning, general feeling of soreness in the pelvis and lower abdomen. Also frequency.

I never did much trigger point massage back inte the day, got into my remissions without really comitting to that. I did do the stretches religiously though, which I now do again twice daily (HITP-strecthes and a few more). These are also moments of good relaxation when I practise nasal diaphragmatic breathing. I also try to add short moments of this kind of breathing during my workdays.

I will have to take massage seriously now though, must learn to do MTrp release. There aren´t many in my area that seem very skilled, but at least someone must be able to teach me to treat the external Trp´s. For learning to do internal massage I might have to go to F-act Clinic in Amsterdam when Covid is over, still no one seem to perform it in Sweden.

Rectus Abdominis trigger points are listed in some sources as a trigger for bladder pain and frequency, yet this muscle group is not mentioned in HITP. Is there a reason for the central abs not being recognized as a possible problem there? I feel that my lower abdomen is really sore, feel it when I do the Cobra stretch.

[webslave]

It may be that that muscle is not a common Trp location. It clearly is in your case though. We are all a bit different, and nerves are not in the exact same location in any two people.

[Hacksquat]

Yes, I have read a few success stories on here too where the poster had TrP´s in the lower abs. That´s a place to start looking when I see a PT.

I am also a little bit unsure about my stretching. That´s the part I really commit to and really do each and every day, morning and evening. The squat stretch and other stretches that open up the pelvis feels good when I perform them. I feel circulation increasing down there and it´s a good sensation.

Also, since 10 years ago when I was last symptomatic, there has emerged literally thousands of websites and Youtube-channels about pelvic pain, all of them advocating almost the same Yoga-like pelvic stretches. Many of them even seem to imply that stretching and relaxtion alone can heal pelvic pain if there is a problem with hypertonicity. Maybe for some that is the case.

However, if I have active trigger points, will stretching actually do more harm than good? What are your thoughts on this?

Especially my hip rotators (deep six) seem tight and unwilling to loosen. I get short-term results but the next day they are equally short again. Pretty sure I have TrP´s in one or more of these too (Piriformis and/or Obturator Internus) since I have some hip pain when sitting or lying down and tender points in my gluteal area that may very well be these deep muscles.

[webslave]

Stretching always helps. I'm a big fan. Go slowly though, it's not an Olympic sport!

[Hacksquat]

Yes, sometimes stretching make me a bit sore and make me wonder if I'm doing something wrong. Especially my hip rotators seem sensitive to overdoing stretching.

Also, I got a message from my GP whom I had asked to refer me to a urologist. He told me I must try a 4-week cycle of antibiotic first (Doxycycline), just to be on the safe side. Note that we never found any bacteria in any of the two urine samples I did.

My hope was to see a urologist to do a TRUS and to make them analyse my prostatic secretion for bacteria. I think this would be wise just to rule bacteria out this time as well since it's been many years since I was last symptomatic.

If they would find something I would obviously use an antibiotic, but I don't want to go through this all over again trying numbers of antibiotics unless indicated. The only thing antibiotics did to me with my previous bouts was to leave we with an upset gut that took time and a lot of probiotics to heal.

I hate it when this happens all over again and the question of bacteria rises. Make me question myself all over.

[webslave]

That's just the uro doing a CYA manoeuvre. Visiting uros —after a uro-soluble problem is not found to exist— is pointless.

Sore joint tendons could denote a touch of fibromyalgia, common with CPPS.

[Hacksquat]

Yes, that's true, the only reason for me wanting to do a check-up with a uro was the long timelapse since last time. Symptoms are very much alike 10 years ago.

I don't think its fibromyalgia, it's only in these particular muscles and not a general problem with stretching. Had problems with them in the past too, many years of bodybuilding and powerlifting with no stretching has really made them short. I'm pretty sure I have trigger points in it (Piriformis), have a lot of tender point in my gluteal area. In the past I went to a massage therapist that managed to resolve it and after that I got more flexible, will try doing that again (Trp and classic massage).

[Hacksquat]

Another tough decision to make with this condition is whether to keep exercising or not?

I still go to the gym a few days a week. Exercising legs and abs seem to worsen symptoms, same as in the past. Tried two times these 3 months and both times I got a worsening of urinary and bladder symptoms for a few days.

Upper body works better but obviously even then you tense your core and pelvis, although not as much as with doing specific training for those areas.

Quitting exercising altogether is not an easy decision, since the positives of doing it are strong too. It helps with anxiety and generally gives me a better mood, helps with sleep and more.

I try to convince myself that short-term pelvic contractions in the gym is not as bad as more habitual clenching. Stretching is extra important though to balance the contraction from exercising.

[webslave]

Moderation in all things, is my approach. I walked for about an hour a day all through my UCPPS. I had an element of CFS, so more exertion than that was not possible.

Listen to your body. If heavy exercise or weights makes symptoms worse, cut down, or try another form of exercise, like walking or swimming. It's not a permanent change, just until you are well again.

[Hacksquat]

About assessment of internal pelvis muscles (levator ani and obturator internus), there may be many months until I can travel to a skilled practitioner outside of Sweden (Covid restrictions).

Hence I realise I must start to check around in there by myself. I have found a few videos on Youtube about using wands, but they mostly seem to be aimed at women and intravaginal massage. Are there any good instructional videos for men out there?

[webslave]