u/Odd_Reception_1612

I’m at a point where I don’t know where to go with treatment. I experience constant urgency and pain that hasn’t gone away in 13 years. Idc how crazy it sounds, tell me what has worked for you that isn’t Amitryptyline, supplements, diet change, hydrodistention, azo, catheterizing, muscle relaxants, Benadryl, Botox, pelvic floor PT, TENS, antibiotics, or bladder instills. (I’ve tried these already).

I have an appointment on Monday to learn to self-catheterize for my IC and I’m really nervous. I have trauma that makes even basic gynecological exams extremely difficult for me and I suffer from panic attacks that happen during them. Had the same occur when I was in the ER and they tried to catheterize me. No coping mechanism or medication that doesn’t just straight up knock me out has done a thing for me. That’s one reason I’m trying to learn to self cath, so maybe doing it myself will lessen or not trigger me as much. Especially because I’m really hoping the bladder instillations will help me since nothing else really has and I likely wouldn’t be able to withstand the procedure awake or done by other doctors. If you have trauma and had to self-cath, how easy/difficult was it to learn? Is it better than having someone else do it? What were struggles and things that helped?

I have an appointment on Monday to learn to self-catheterize and I’m really nervous. I have trauma that makes even basic gynecological exams extremely difficult for me and I suffer from panic attacks that happen during them. Had the same occur when I was in the ER and they tried to catheterize me. No coping mechanism or medication that doesn’t just straight up knock me out has done a thing for me. That’s one reason I’m trying to learn to self cath, so maybe doing it myself will lessen or not trigger me as much. Especially because I’m really hoping the bladder instillations will help me since nothing else really has and I likely wouldn’t be able to withstand the procedure awake or done by other doctors. Has anyone had this kind of experience? How easy/difficult was it to learn? Did cathing help the IC pain alone?

Background:
I’m in a realm and there’s one player that has targeted and bullied a friend of mine near-constantly on a public realm. Recently one of the more experienced/stronger players in our small group (of three) helped make a truce to keep him away from our group and base. As soon as he left, the aforementioned player decided to go invis, raid our base, and kill my friend again. He also killed me and destroyed my respawn point. MIND YOU, the world spawn has been completely annihilated and you now spawn on a bedrock overhang hundreds of blocks up, making it impossible to continue playing if you 1) do not have an elytra and 2) do not have a player who can provide elytra for you.

The stronger player (the one in our group) I mentioned has not been killed and likely still retains most of his materials (which is quite a lot and includes multiple elytra I believe).

The ask:
I’m asking if there are any PvPrs bored or wanting to fight someone on a realm who would be willing to help us take this guy out just once.

DM me if you’re interested.

I’m trying to get into Unstable SMP and I found a playlist (Unstable Universe Accurate Timeline) that has all of the videos. This is the one I’ve been watching. I have noticed though that many watch one POV (like Parrot’s) then follow with the others. What’s the better way to watch? All of them in the order of events or one POV at a time?

This is an org I want to join as I myself am a Muslim woman and starting soon in the fall. I’ve never joined one before and I just wanted to hear the experiences from others who are already in it! Please lmk how you found it and if you’d suggest it to incoming students.

I’m playing skyblock on bedrock edition and the first time I played my trees grew just fine in a corner. This sapling has been sitting here for over one in-game day and has not grown. It’s two blocks away from everything in every direction and the game has daytime (so sunlight). I do have a cobblestone generator nearby but the lava is decently far away. Help.

(I want to preface by saying: I know not all anesthesiologists are bad, this has just been a very repeated and upsetting occurrence for me and I’m curious to see if anyone else has faced the same)

I have gone under anesthesia multiple times for multiple different reasons in completely separate locations. But somehow the worst experiences I’ve had with those procedures have always been related to anesthesiologists (not the anesthesia itself) that have put me in agonizing physical pain and/or intense unnecessary stress.

I can think of the two worst ones (although there were absolutely more) and one was my eye surgery:

The anesthesiologist had me in the room FOR 5 HOURS because I could not pee for a urine sample. Because I had not drank anything since midnight. On top of that, I have IC so this kind of stress emotionally and on my bladder put me in severe constant pain for those entire 5 hours. He refused to tell us what the test was for and after 5 hours of waiting my doctor/surgeon (love her sm) pressured him into telling us and it turns out it was for a pregnancy test. I was in agonizing pain and stress for 5 hours over a pregnancy test. I was 15 years old. My doctor argued with him over it because she could very clearly see how distressed I was on TOP of it messing with her own schedule. After arguing for who knows how long, my mom was eventually cleared to sign a kind of waiver for me that ensured I wasn’t pregnant and I finally got in for the surgery. This sent me into a severe IC flare and I struggled to function for several weeks and it wasn’t just because of my eyes.

Situation #2 (a situation I am CURRENTLY going through):

I suffered from severe IC for 13+ years and have been in pain almost every day of my life and it’s just gotten progressively worse. I finally was diagnosed far later than I should have been (which is a whoooole other rant) but I was finally receiving help. I failed medication trials, diets, and PT so the next step was identifying whether I have Hunner’s Lesions, removing those lesions if they’re there, doing a hydrodistension for some relief, and getting cleared through the cystoscopy to start bladder instillations. Possibly the only thing that can provide me relief from 24/7 pain. I had it scheduled months out, I started the prep, did the pre-op and less than a WEEK before I was meant to go in, the anesthesiologist cancelled it (and no, they didn’t reschedule. They put it on ME to reschedule). They cancelled it because they saw I had a cardiologist appointment coming up and wanted me to do that first. Pushing back the procedure I had waited MONTHS for. But whatever, I saw the cardiologist after some testing and she didn’t give me a clear answer, but confirmed my problems weren’t anything dangerous. I schedule it again. My cardiologist and other doctors sent clearance to the hospital verifying that I was okay to go under and have the procedure done (which btw I had to fight for because these offices cannot communicate between each other or me for the life of em) The EVENING BEFORE I was supposed to have the procedure (after a week of prep, planning, and calling off that day) I was told the anesthesiologist wanted me to see an EP first. They were cleared by cardiology. Cleared by my uro/GYN. Even cleared by the hospital ITSELF who called me in that same day to confirm I had the appointment. Cleared by EVERYONE. But my OPTIONAL appointment that I chose to make for double confirmation with an EP held them up. The day before I was supposed to go in. I cannot see my EP for another two months. Within that same month, I’m moving out. I literally CANNOT wait that long otherwise this procedure (that might be the only relief I get within my life from this horrible condition) will have to be cancelled because I WONT BE HERE. My cardiologist is angry, my uro/GYN is beyond angry, and I have spent the last two days crying and trying to pull myself together because of an anesthesiologist. I cannot keep doing this and having these experiences.

I’ve noticed that a lot of my pain occurs when my bladder fills (after I drink something). It occurs with everything including water, although some drinks are worse than others (those I consider my triggers). The pain is temporarily alleviated after I pee although usually only for maybe a minute or so. And the “pain” I have is most prominently constant urgency and pressure. During flares the pain becomes more sharp and comes in spasms. Otherwise it’s just a constant state of urgency.

Does anyone else experience this?

I have severe IC and during major flares/spikes I become pretty much immobile from the pelvis down due to intense pain that can last hours at a time. I currently have nothing to help me and soon I’ll be leaving to university so I won’t have my family with me.

What should I do if this happens while I’m alone or in public? I cannot move at all and exist in unbearable pain that heavily impacts my communication, clarity, and movement. I feel like this could get very dangerous for me alone.

I’ve heard some people mention “emergency meds” or procedures to take when this happens unexpectedly. I am not asking to be prescribed or treated, but is there anything I should ask my doctor about from your experiences with what helped?

I have severe chronic IC and during major flares I can spend weeks on a dangerously low amount of sleep (to the point of severe sleep deprivation that impacts my body and mind significantly). More immediate during those severe flares, I typically cannot move my body from my pelvis down without being in agonizing pain. I can’t get very far even with help and often need support just standing up. I have no medication or treatments currently (I’m going into a cystoscopy soon and possibly following with self-cathing and bladder instillations).

Until I have these methods or if they don’t work, would going to the ER for catheterization or pain meds be a suitable way to pass major flares?

I had a severe flare shortly after my hs graduation started (I’m planning to make a more vent-y post about that separately). I couldn’t leave the bathroom because I couldn’t walk and was genuinely sobbing and borderline screaming in pain.

Because I couldn’t move, they were trying to call EMS but myself and my mom convinced them not to (because honestly what could they even do?) My mom had to genuinely carry me out because I genuinely could not walk (much love to her). Every step was absolute agony to the extent that my body rejected movement entirely and made me nearly collapse (if not for my mom) if I’d tried to take more than one or two steps.

My mom drove me home (although I was miserable the whole way back) but once I got there and was able to urinate I felt much better.

Is it this severe for anyone else? This has happened repeatedly (ESPECIALLY when I try to force myself through flares) if so, do you have any emergency go-to’s to help? Could EMS be helpful in this situation?

I become completely immobile when this happens and it would be incredibly dangerous for me if I’m alone. I really need some advice if you have it 💜

I saw someone mention somewhere (possibly on this Reddit) about getting/using a TENS (Transcutaneous Electrical Nerve Stimulation) machine/unit for PFD, urgency, and easing spasms.

Have any of you tried this? If so, how were the results? Which one would you recommend?

I just finished my TTT the other day (it was miserable, but got answers) and when I followed up with my doctor, she said that the test didn’t show “typical POTS” and she wanted me to wear a 24hr Holter monitor to check for IST. I did some research and I’m just a bit confused. I AM tachycardic constantly (resting anywhere from 85-110BPM) but my heart rate still spikes 30-40BPM when I stand and comes along with symptoms like dizziness, pre-syncope, blood pooling, nausea etc. Because of this I have not been able to walk around the grocery store very often and when I do, I can’t without support.

Is it possible to have both POTS and IST? Is this normal for just IST? Thanks!

(Just to clarify, I am not asking for a diagnosis. I am working with doctors for that reason!)

I wanted to add an image showing a “poor man’s tilt table” I did prior to the official one when I was off my meds but it won’t let me 😭

Hi!

I’m an incoming student for the fall semester and I am both chronically ill and disabled. It can feel very lonely sometimes and I was wondering if there are any existing groups for the community?

I searched already on KnightsConnect and couldn’t find anything.

Thanks!!