Redub's Progress Log

[Redub]

Hiyo, just joined the forum and have been reading through stuff. I've been especially interested in treatment and prevention and wanted to post sort of what I got going on and my current attempts to fix it. As a warning, for the past few months I trusted doctors to know what was going on so I have been on a lot of antibiotics. Additionally I've been dealing with depression and anxiety since I was about 13 or so and the urinary urgency is like pressing on some sort of anxiety nerve for me. I had been working with a therapist and making great progress and hadn't felt depressed for months until this happened.

September 2: Severe and non-stop urinary urgency (onset)
I went to the ER because this happened during a holiday weekend and we had a category 5 hurricane projected to hit us which may have prevented getting treatment even longer.

ER Trip 1 (and this Er sucked):.

• STD tests came back negative.
• They gave me an antibiotic shot and Pyridium

Hours later I went to ER 2:

• I can't remember much of this because I went into an anxiety attack and more or less went delirious... then they gave me a sedative (I was then put into a psych ward for 48 hours, fun)
• CT scan that found nothing unusual.
• They did a urine test which they said found an infection. I can’t find these results but according to a urologist that was probably a false positive due to the Pyridium.
• Given 2 week supply of ceflex.
• Severe symptoms lessen over the course of 3 days and continue to improve until I feel normal.

September 18: Follow up with PCP
Did urine test, everything normal

September 29: Severe and non-stop urinary urgency.
ER:

• Went to ER since I had a mental breakdown last time and wanted to head it off at the pass
• Do urine test, everything is normal.
• Gave me a shot of keflex and referral to urologist
• Like last time the severity lessons to tolerable after 3 days and continues to improve.

October 2: First visit with urologist
Did test which I don’t see results for but nothing was found
Checked bladder via ultrasound to confirm I could empty it
Told me everything looks good and he would give me alfusozin if it happened again

October 18: Severe urgency back

• I have a plane to catch and urologist can’t squeeze me in so I go to a walk-in clinic
• Urine tests come back clear
• Doc gives me 10 days of bactrim with the idea I will contact me urologist once I get back.
• Get alfusozin script form urologist
• Symptoms gradually reduce over a few days like last time. The alfusozin doesn’t seem to do much.

October 27: Severe Urgency is back
ER:

• I go delirious again
• They perform a blood and urine test
• Blood test shows signs of a bacterial infection. My glucose is also high for the first time
• Urine test shows abnormalities but I was on Pyridium at the time.
• Sent home with just hydroxyzine and no answers.
• Symptoms decline over a few days

October 28: Urologist

• Urologist seems a bit confused on what’s going on.
• Another bladder ultrasound is done to confirm bladder is emptying.
• DRE performed. I don’t know if that told him anything
• I am put on 6 weeks of Cipro and gave more Pyridium. I am told that is the best they can do for symptom management.
• Will perform a cystoscopy in 6 weeks if this doesn't work
• I know they did a urine test but I don’t have results available.

November 6 (or so) Urgency is back but not crazy severe

• Symptoms dissipate over a few days

November 12: Severe urgency is back

• Urologist just wants me to continue antibiotics and prescribes oxybutynin
• Urgency is still going on strong even as I type this but it's intensity can vary quite a bit.
• Started developing other pains and sensations such as itching, burning. Even the pain can vary between sharp or a deep dull ache... or just go away. The pains are typically in the perineum and pubic area

So that is where I am at today. As I am sure everyone here can relate it is having a very negative effect on life. All of my energy has to be put into distraction or trying to keep my head from thinking about anything. The truth is I don't think my marriage is going to last if this keeps up. My life is basically keeping track of when I last pissed and not let myself go again for another 1. 5 hours. To get to sleep I have to take a sleeping aid, get distracted, hold pee for as long as possible, take a piss and hope I fall asleep in the couple minutes of relief I sometimes get after peeing. If I miss that window I have to restart. Most nights I am only getting 4-5 hours of sleep tops since if I wake up it is very hard to get back to sleep.

1. Finish antibiotics just to rule it out.
2. Take at least 1 10 minute walk a day.
3. Do floor stretches twice a day
4. Cut down and eliminate caffeine
5. Cut out spicy foods
6. Get a standing desk and work from home
7. Scheduled a visit with a PT that specializes in pelvic stuff (Soonest appt was in December).
8. Try to find something for symptom relief even if temporary.
9. Let the urologist perform other diagnostics.

Alpha blockers don't seem to help. I am also trying to read 'A Headache in the Pelvis' but it is very hard to read more than a couple pages at a time. Reading just isn't distracting enough and I say that as someone who has read before bed almost every day for the past 20 years... even while hiking the AT.

Any suggestions?

[WS1234]

Try the audiobook book version of HITP and see what the physio has to say

[webslave]

Redub, the anxiety is causing panic attacks. You really should see a psychiatrist to get that properly medicated. You need to eliminate the psychological aspects of what's happening, if possible. Alternatively, a psychologist and anxiolytic meds from your family doc.

[Redub]

I've run that gauntlet quite a bit without success. I think I have been on 12 various antidepressants/anti-psychotics without much effect. I am on my 5th therapist as well

[webslave]

Wow, so you have some history with this. It's most probably a big part of the cause of the pelvic pain.

[Redub]

Kind of weird how it's hard to keep track of time when flares up are super bad. I was trying to put together the last few days and can't wrap my head around it being Thursday already.

Monday afternoon I got some Xanax. I took 1 full dose that day and half a dose Tuesday and my symptoms are 90% gone here on Thursday. Instead of having extreme urgency 24/7 I am just occasionally getting a dull twinge in the pelvic region. I don't plan on taking any more Xanax unless I have a big flare up and am hoping I can last until my pelvic PT appt which is 2.5 weeks away.

[Redub]

Guess I'll treat this as my 'progress log' if that is okay with everyone. I don't remember a lot of last week.

Urgency came back along with a mental breakdown. I had 3 modes last week:
1. Absolute distraction (video games)
2. Turning my mind off as much as possible
3. Mental breakdown.

I only lasted 5 minutes with my therapist before I ended our tele-health call and went home and more or less passed out from 5pm-4am. At some point I saw an eye doctor because I was randomly getting double vision (Try talking to someone who has 4 eyeballs). It became dangerous when I hit a curb and popped a tire. Thank god that was the only issue. I am limiting my driving for now.

I saw a pelvic PT on Friday but thanks to Xanax and me being so out of it I can't remember much but she gave me exercises to do. I think there is a better pelvic PT place across town but has a longer waiting list (I am scheduled for Dec 9th or 10th). I plan on going to that one as well.

On Saturday my urgency dialed back into just about nothing and I had a gloriously reprieve! It lasted until Sunday evening. This at least gave me enough time to fix the downward mental spiral and get a significant part of Headache in the Pelvis read.

I installed a standing desk at home so while playing video games I was switching between standing and sitting. I feel less urgency while standing.

My only real additional goal from what I posted earlier is to make a conscious effort to not go into a negative mental space. The non-stop urgency is maddening but if I let it make me mad or distressed it is only going to postpone relief. Also ordered a therawand thing. My wife is a massage therapist and I used to be a triathlete so am already a big believer in the power of trigger points... but no way I'm asking her to treat the internal ones. What if she ends up liking it? I can't take that chance

[webslave]

My only real additional goal from what I posted earlier is to make a conscious effort to not go into a negative mental space.

Very important, especially for you. Catastrophizing is linked to poor outcomes.

[Redub]

I am getting more and more time where I am either symptom free or the worse symptom (urgency) dials way back. I take a Xanax when it's late and I need symptom relief in order to asleep. That is about every 3rd day. I'm not sure if the symptom relief is that the Xanax lets things 'wind down' for a few days or the 100 other things I am doing that is making a difference. Basic care plan is:

1. Do PT stretches once a day
2. Work on trigger points every other day
3. Try to do 'body scan's as I remember and relax any muscles that are tight. Even if I do this every 60 seconds I can find something that is tense for no reason.
4. Spend some time before bed 'meditating'. I'm calling it that but it's really just quiet time to focus on being present sort of mentally explore whatever sensations my nervous system is sending me. Kind of like ERP except I don't do it for 2 hours a day and not quite like traditional meditation because I don't have an mantra, totem or whatever they want to call it.
5. Take Xanax when absolutely necessary. I'm fortunate that I hate the way this stuff makes me feel so I do my best to not take it.

I met with my therapist for a full session while I was feeling better which was good. It's someone to talk things through with where I don't need a filter. If I talked to a family member such as my wife or mother about how terrible things were it really wouldn't be helpful. We also were able to connect the dots to this occurring literally the day after a huge mental breakthrough in therapy. I say breakthrough but it wasn't like a 'everything is great now' but we found an area that I had mentally sort of closed out of and we're opening it. Kind of like finding abscess. It didn't fix anything but it found a source of pain and needed to drain and heal. I can't really succinctly sum up the details so I'll just say it wasn't easy since I have been spending the past 15 years suppressing and repressing everything. There is a good chance that was sort of the tipping point. The lifetime of depression/anxiety had everything wound up so while trying to push through the mental protective barriers 'broke' something. Anywho, while doing my relaxation/meditation/whatever sessions she just wants me to make a note of the thoughts that came up and gently think about them or write them down to think about later. The idea is gently sort through things as opposed to opening a dam.

That's the theory anyway. If the urologist can't find anything and PT + relaxation work cures it then I'll feel pretty confident about this hypothesis.

And admins if this last part is inappropriate feel free to remove it. I've done a bit of psychedelic therapy before this all occurred and had VERY positive results. I might trying microdosing psilocybin to see what sort of affect this has. I actually meant to do it today but oh well. I've microdosed LSD before which had a super energizing and mood boosting affect. I'm a socially awkward and introverted software engineer but when microdosing I am... the opposite. Super positive and outgoing. I kind of wish I could just do it every single day and make that my default person. I can see why this has become a popular thing in the digital work space. Anyways, psilocybin tends to promote a more calming affect.

[webslave]

Excellent!

[Redub]

So Weekly Update:

1. Pretty obvious cycle of taking a benzo at night then having 2 days of having very little symptoms. The day after taking a benzo I am a zombie so I get one day where I am almost normal. Anyways, not a good solution at all but it's at least something while I wait for something else to work.
2. The stretches the original PT gave me are much easier now. One of them feels basically useless now as I don't feel any stretch. This sounds good but clearly hasn't led to symptom relief.
3. I've done internal trigger points every other day. Yesterday were the mildest they have ever been.
4. I haven't done external trigger points since Sunday because I think I went a little too rough on the ones in my glutes. The area felt bruised.
5. My wife is an LMT and she did some myofascial release on my back until her hands got tired and then a Swedish massage. It was relaxing but I had to pee the entire time since it was a 'high' symptom day and laying down increases. Honestly it was more for her benefit so she could feel like she is helping.
6. Sleep has been an issue since this started. On regular days I would take OTC option which basically means melatonin and/or benadryl re-labelled as a sleeping pill. They stopped working and it was becoming an issue so I saw my primary who put me on Trazodone which was originally an antidepressant but causes drowsiness and is often given for insomnia now. It was only a matter a time before my primary found a way to get me to try yet another antidepressant. I took it for the first time yesterday. I never felt any drowsiness but I did fall asleep and woke up around alarm not feeling groggy (which has been an issue). I still feel tired but whatever. We will see how it goes. I did see that this particular medication seemed to have really helped someone on this forum in the past. My hopes aren't particularly high beyond it helping me sleep while getting other things figured out.
7. Due to grogginess I kept forgetting to microdose. I did it today but can't really report on the efficacy of it.
8. Next week I finish my 6 weeks of useless Cipro, see my urologist and see a PT who does nothing but pelvic stuff. My urologist said if the antibiotics didn't help we would be doing a cystoscopy but I don't know if he meant at our next appt or if it's something we would have to schedule specifically. I just want to get it over with. I'm still in a spot where I haven't received a specific diagnosis of anything. Hopefully next week either the urologist or the PT can pinpoint something more specific.

[Redub]

Update:

1. I had an adverse reaction to antidepressant Trazodone Thursday evening and ended up in the ER once I started vomiting up some blood. Things are fine now but obviously not a med for me to take.
2. Urgency issue was heightened this weekend.
3. Got a cystoscopy and urine flow/volume test done this morning. Urologist said everything looked fine in the cysto though my flow was on the lower side of things. Maybe that was because
   1. They had just injected lidocaine up my peepee hole,
   2. I was still very uncomfortable after the cysto procedure and
   3. They had me sit down to pee for the test.
   Oh well. He said he has no surgical options but mentioned some sort of procedure whose names I can't recall. For now wants to to try oxybutynin and alfuzosin at the same time. I have already taken each of these on their own with no affect. It feels like a waste of time. I'm wondering if I should just ask for Elavil since that seems to help a lot of people with my main issue with is urgency/frequency.

Tomorrow I see a pelvic PT specialist... maybe they will find something off.

Since I doubt mixing two medications that have not worked on their own in the past (oxybutynin and alfuzosin) I suspect I am still back at my only real symptom relief is to take a Xanax every few days which is obviously not a good solution for much longer.

[webslave]

Oxybutynin is an overactive bladder medication and alfuzosin is an alpha blocker that will work by relaxing the muscles in the prostate and bladder neck. They may work synergistically; I think that's what the uro is trying to achieve.

Elavil is definitely worth a try if the other meds fail.

Try to replace Trazodone with another med. They are all different, so you won't react the same way (hopefully).

[Redub]

PT Update: Found a lot of tight muscles in usual problem areas. Glutes (particular the left) and adductors are the tightest. Trigger points on external perineum... pretty much trigger points everywhere internally. PT said given that I have thoroughly gone through the urologist with no success she said PT will probably take care of it. I'm a paying client so I take that with a grain of salt. I start seeing her once a week starting in January. Possibly be sooner if she has cancellations.

My PT is an attractive young lady which somehow made it more awkward when she was as deep as her finger would allow in my butthole. It's easy to tell if she hits a trigger point because if my mind went from 'this is frigging uncomfortable' to 'ouch' it was a problem area.

Something odd she did is push through my pubic area to feel my bladder. To me it just felt like a regular touch to me but she said on the right said she could move it a bit which was normal but it wouldn't budge at all.

Anyways, got some homework:
1. A glute stretch twice a day
2. An adductor stretch twice a day
3. A hip flexor stretch twice a day
4. Breathing exercise twice a day (or any time urgency spikes)
5. Self-trigger points in perineum

She didn't assign internal trigger points but I'll work on those anyway. My wife is a massage therapist at a chiropractor so the PT jotted down some mumbo-jumbo that she could do that might help. I think it's myofascial or whatever release. Also wants me to drink at least 100oz of water a day since a huge irritant in the bladder is concentrated pee. My water (and food) intake has dropped quite a bit since this has all occurred so I am well below that currently. She also encouraged me quitting caffeine which I am in the process of doing (hoping to be caffeine free starting next week).

Later that day urgency was about on par or worse than usual. It was at the end of my 3 days Xanax cycle so I wasn't surprised.

I was given Doxepin instead of Trazadone by my primary. I took it the night before and maybe it worked, idk. The next day I developed a real bad headache so I decided not to take it a second day in a row given my recent experience with Trazadone. If I feel okay today I'll give it another shot. I really should of just asked for Elavil. Oh well, If I can hold it together for a few more weeks I will be able to see if PT is working or not. If it's working then great, I don't need any meds. If it isn't working then I can look into Elavil knowing that I ruled out other avenues that don't involve me taking a medication for life.

What is strange is I see people here talking about flare ups and stuff but for like a month now it's just been constant with the only relief being from a benzo every few days (fingers cross. 25mg every 72 hours doesn't cause addiction). The relief also is just a lessening of symptoms so I am not quite so distracted and I can get to sleep without extreme means. I guess at first I had flare ups but they kept getting shorter breaks in between until it was constant. Oh well, that's the nature of using umbrella terms like 'CPPS'.

I don't have any relevant appts coming up for another 3 weeks or so so probably won't update that again unless I notice a change.

[Redub]

PT had a last minute cancellation yesterday so I got in. She noted my internal trigger points which much better and gave me the okay to start running again.

I don't feel any big improvements in any of the conditions. Sometimes I sort of think it is but then when it's time to go to sleep it seems to get worse.