Redub's Progress Log

[Redub]

Two week update. Mostly things are fine. My wife is trying an elimination diet so I am back to just rice, beans, eggs and avocados again (all I had added was onions and non-spicy peppers). I did have a minor flare up last night and I can safely say it wasn't food related but I don't know what brought it on.

[Redub]

Alright, I have been eating more regular food now since I am away from home for a month. I also was in a car for 11 hours. No flare ups. I also realized my fitness watch tracks sleep. It isn't very accurate since it counts me laying in bed reading as sleep but what it is good at is tracking how often I get up in the night to pee. In the past week I have only gotten up once on one night. Now in fairness... I have been sleeping 5-6 hours rather than 8 but it's something.

Things still aren't perfect because I'll sometimes get a 'you may have to pee' tingle not too long after urinating but it's minor and I think that is slowly going down as my brain/nervous system learns it isn't important.

[Redub]

I flared up last week and still recovering.  Initially I assumed it was food related since I am travelling and couldn't exit my elimination diet properly  but I recently noticed the problem is worse when sitting or laying on my back on a soft bed.  I switch to laying on my side it alleviates things.  When sitting for long periods of time my upper boot hurts.  Months ago I got a wedge shaped cushion as per my PT but it actually caused sitting pain so I stopped using it. 

Not quite sure what to do about it yet.

[webslave]

Could be a spinal problem. Try ice packs to lumbar spine
viewtopic.php?f=11&t=8015&p=46158

[Redub]

Aight, it's been a month. Everything has been manageable but urgency still mostly falls into the 'mildly annoying' stage. I suspect it would feel worse or harder to cope with but it's been about a year at this point so it's whatever. I have been eating nothing but rice, beans eggs, avocados, water and some almond milk for the past 4 weeks. I did notice the Teccino stuff actually would bring on urgency a bit so I am done with that for now.

I am making some more acupuncture appts. I haven't done anything with the spinal problems. I guess i'll ask my wife(LMT at a chiropractor) if they can treat 'tailbone' pain and see if getting that fixed might help.

[Redub]

Last update was 4 months ago.

Basically life is normal now. If I think about the issue I can feel a tingling in the pelvic region at the base of my wiener that kind of feels like a slight urge to pee but it is incredibly easy to ignore. Basically if I don't think about it it isn't there and even when I think about it it is so small it doesn't matter. I routinely go hours without feeling like I need to pee. Zero spasms or anything else.

I started caffeine again and no notable increase except for the initial coffee pee. Oddly enough I quit caffeine again because it causes anxiety in me and I feel so much better without it.

The last few months have been pretty darn stressful as well. Basically something happened so we found out our house was going to get sold way sooner than expected and we hadn't secured or even finalized where we were moving to. Then when purchasing the house everything that could go wrong went wrong and once that was finally done we had to figure out moving across the country with 5 cats. Basically it was a very rough few months and started having some big anxiety issues just because everything going on at once. I think I had a slight uptick in symptoms in mid September but otherwise everything was fine CPPS wise.

Foodwise I am back to normal and enjoying spicy foods again with no issues. I have had alcohol a few times and no big issues but my alcohol consumption is less than once a month.

I moved to Colorado from Florida so I went from a hot and humid environment to a place where the temp hasn't really gotten above freezing more than once or twice in the past few weeks. I've been cross country skiing, snowshoeing, hiking and running out in the cold weather and it hasn't caused any issues.

Basically things have been going great and I just wanted to update it since this forum tends to get a lot of bad news from suffering new members and here is a little bit of good news. I intend to come back in a few more months and if things have gone well I'll self-claim that I am a success story.... though arguably since I went from being locked up in suicide watch with no will to live because things were so bad and now I am living a pretty great and unaffected life it's already a success.

Admin comment:

[Redub]

Why hello there.

As an update I had another huge flare up... thanks to psychedelic mushrooms. I use them as part of mental health therapy and I knew they caused flare ups back when this all started but since things have been calm for a very long time and I am able to enjoy other foods that can cause issues (coffee, diet soda, etc) I was hoping things would go well. No dice, went to a 9/10 on the pain scale and ended up in the ER. I never actually saw anyone at the ER because the place was ran so poorly and things subsided down to like a 6/10 during me 2-3 hour wait. It's been about a week and I am hanging out at a consistent 3-4/10. It's much easier to deal with since I've been here before and I know it will go away but obviously a bit annoying. It's 90% sort of a burning/frequency in the bladder and urethra and a few muscle spasms that aren't too notable.

I did see my new primary about it and it was an amusing game of 'Have you tried this? Have you tried that?' and all the answers were yes. I wasn't looking for a solution just something to help me sleep. She gave me amitriptyline which I tried in the past. It helped me sleep but I forgot it makes me ravenously hungry 24/7... like so bad it's hard to concentrate on anything else. I'll be sick to my stomach full but still super hungry. So I am done with that. It's weird there isn't a medication that just treats 'bladder inflammation' or something.

I have also noticed if I drink a decent amount of diet soda I would go from a 0/10 to 1 1-2/10. It's mild and I suspect if I hadn't had issues in the past I wouldn't even notice. Not a big deal since I rarely drink diet soda and usually only like 1 glass at a time. It's just that when I had visitors they would fill the house with diet soda so I would drink more of it.

Anyways, 100% seems more food related than anything else. I went through some tough mental times since my last post with zero increase in symptoms. Anyways, psychedelics are dead to me. As I said I used them for therapy and have a 'integrative therapist' afterwards but looks like my body has more or less decided to start rejecting it in a very harsh manner. I've found one other post where someone has IC and has the same issues so I guess I'm not alone but it seems to be very rare. I have other options available with MDMA in phase 3 trials for therapy with amazing results and I know that doesn't cause any issues with me.

Anywho, I'm overall in good spirits and the pain is at a manageable level. I'm a little more irritable but that should be expected when in constantly, minor pain and sleep quality drops. Hopefully this fades away faster than last time but I think I can mostly be normal with where it is now. I am trying two OTC supplements though my expectations are low.

[canada604]

Thanks for giving updates!

[Redub]

I am pretty close to being back to normal now. Actually I've been that way for weeks. I didn't do anything special really.

[abhey007]

Hi Redub, my symptoms seem to be similar to yours. The worst is the stinging in my urethra after I urinate that lasts for 30-40 minutes and leaves it tender. Did following the diet help with this ?

[Redub]

Hi Redub, my symptoms seem to be similar to yours. The worst is the stinging in my urethra after I urinate that lasts for 30-40 minutes and leaves it tender. Did following the diet help with this ?

Honestly, I'm not sure exactly what helped. I do notice if I drink a lot of diet soda it gets a bit worse so I think there is something food related but it might just be sort of an irritation vs a cause. I would say if you are suffering than an elimination diet is a great idea. Worst case you can re-align your eating habits and best case it fixes things.

So on to why I logged in. I have long had a suspicion that my problem still exists but what's happening is that, perhaps due to hours of relaxation meditation, my brain has sort of rewired how much attention it pays to those nerves in the pelvis. So basically, the pain exists but I don't experience it... usually. I said psychedelics make it act up but I think what happens is the part of my brain that ignores those nerves stops ignoring them and then my pain increases big time. Once the psychedelic wears off improvement is rapid. I say this because a few months ago I did a Bufo retreat (smoking toad venom.... don't ask). The thing with that is it's very short acting and you vape it. It hits in about 5 seconds and only lasts 10-30 minutes. Basically within 5 seconds of taking a vape the pain in my pelvis went REALLY high but nothing really went through my bladder or whatever yet. Once the high wore off I was 100% back to normal. With longer lasting psychedelics the pain would go down much slower (mushrooms last a few hours, for example).

Anyways, my wife is a medical massage therapist. She felt my pubic bone area above the bladder and immediately said 'I feel a lot of inflammation here'. I'm not in pain atm but that would back up the notion that the problem always exists and my brain just programmed around it. So my new thing I am going to look at is if there is a way to simply treat that inflammation directly. My wife works at a place that has a lot of different practitioners and they don't treat their patients like most urologists do (meaning in and out, don't care if you are fixed). I'm a patient there already for acupuncture and I guess we are going to discuss some ideas with them.

So, if we found an ultimate solution that would be dope but really with how life has been it wouldn't be a huge deal if I just keep living this way. Most of the time I don't even know it exists unless I think about it or I do get some minor irritation... and with the minor irritation I don't think it would usually be something I'd notice that much except that I am aware of it.

[Redub]

Alright, I've been super tired (actually need to see a doctor about this on it's own) and in a mental fog the last few days but as I am coming out of it my plan is to do the following:

1. Talk to my new primary. I doubt she will have any solutions but I am going to ask for Hydroxyzine. Ideally a lower dose because I really don't want next-day drowsiness as I have enough of that going on ATM. I've been on Hydroxyzine before for anxiety and I think I've read enough on this forum that it's worth a shot taking it regularly for a while to see what happens. I don't want to be on it forever but I'm kind of hoping if I am on it for a few months it will have sooth the inflammation around my bladder and, maybe, if the inflammation more or less goes away it won't come back even if I am not taking the medication. I searched on t his forum quite a bit and found a number of posts where this was the case.

2. See a nutritionist for an anti-inflammatory diet. I did an elimination diet but this would be a bit different since I am not trying to find a trigger but trying to reduce inflammation. The deal is I already eat healthy and eat very little processed foods. Basically a processed food is a treat for me that I can go weeks without eating. When I search for anti-inflammatory diets I am more or less already on one. I guess this is basically because the SAD (standard American diet) is such garbage that their information is actually good for most people. It reminds me when a doctor tells me to eat more fiber even though my breakfast alone usually has the daily recommended amount of fiber for adults already. Anyways, I am thinking maybe seeing a specialist will offer more detailed advice on what to try. My wife (medical massage therapist) works at a place that has a nutritionist and I can get a family discount there so that will be where I will first investigate. The providers there work together and I know they have helped people with pelvic pain in the past.

Anyways, my life is pretty good right now and CPPS is mainly just mildly annoying at times but most of the time not even a factor so even if this stuff doesn't pan out it won't be a big deal.

[Redub]

Updates: Everything symptom wise is the same. That basically means if I don't think about it I don't have much in the way of issues except slightly higher than normal frequency. My primary agreed to put me on hydroxyzine which hasn't changed anything CPPS wise but it at least has made me sleep better which is very welcome. I am on 25mg right now but she said we can bump it up if I want.

The nutritionist route is on hold but I saw the chiropractor that works with my acupuncturist. He found a whole bunch of pelvic dysfunction... he was actually kind of astonished how well my muscular-skeletal system has compensated for the dysfunction. He also said with everything put together he would bet that I was headed towards a disaster but that disaster already happened. I wish I could go into more details but it was A LOT of information with big words. He said he couldn't guarantee the root issue or if he could fix but if he was a betting man he would say it was related. So I am pursuing this path both in the off chance it can 100% clear CPPS and because I love endurance sports/fitness and getting this resolved would be in my best interest anyway.

I should also mention the chiro was flummoxed that previous health 'professionals' didn't pick up or mention any of this.

[Redub]

Update: Things are still the same. Some of the chiro treatment would flare things up a bit but nothing major. I do have new news, however. I got an x-ray down and it found the following:

1. Moderate to Advanced Disc narrowing on L5/S1. Not a surprise since this was injured in a car accident like 6 years ago or so.

2. My pelvis is certainly tilted with my right side going forward and down, I believe

3. I have 'Degenerative posterior retrolisthesis on my L5. I guess anterior retrolisthesis is common but posterior is very uncommon. In fact I am the first case my chiro has ever seen and he is a very experienced chiro . This would explain why my CPPS symptoms seemed so weird. I think I mentioned it before but my wife works at the same office and the chiro told my wife that he can 100% see what's pushing on the bladder and causing inflammation and that it is 100% fixable.

I am still not getting excited about anything but I do have some budding optimism now. My plan for the next few months are these balance exercises on my right hand side which will open some things up and then get a big adjustment done every 2 weeks.

[Redub]

Well, it's been about 5 months since I started working with the chiropractor. Things are the worst they have been in like a year and a half. Sucks. I can mostly be normal during waking hours but it's hard to fall asleep and I wake up multiple times a night and have a hard time falling back asleep. When this goes on for days to weeks on end the cumulative effect is really rough.

I'm going to put out more feelers. There is a place nearby that focuses on pelvic health for men and women so I talk to them. I am also going to talk to people about dry needling.

The chiro is certainly fixing an issue but I'm not confident it's completely related.. but maybe it is since the pain has been ramping up consistently.

It is starting to bring down my mental baseline again.