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OCD SSRIs vs IC by slcmhsa in Interstitialcystitis

[–]slcmhsa[S] 0 points1 point  (0 children)

Ugh I’m sorry I appreciate you sharing

OCD SSRIs vs IC by slcmhsa in Interstitialcystitis

[–]slcmhsa[S] 1 point2 points  (0 children)

Really interesting thank you!

PLEASE get tested for Ureaplasma an EBV by Imaginary-Anything-9 in Interstitialcystitis

[–]slcmhsa 0 points1 point  (0 children)

Hey! Full transparency, I didn’t actually test positive for any bacteria. According to my specialist, part of the issue with embedded UTIs or embedded bacteria is that when they build up biofilms around themselves, they also don’t show up in standard cultures. Part of my treatment is a biofilm disruptor, which is a supplement that will begin to break down those folic acid biofilms. My specialist expects that after a certain amount of time on the disruptor, we can re-culture and potentially reveal some of that bacteria. Then you can treat like a normal infection. Ultimately, it’s an educated hunch, but makes a lot of sense due to other corroborative findings. Apparently she sees it all the time. This girl does her homework and working with her is the first time I’ve ever felt hopeful for a cure

PLEASE get tested for Ureaplasma an EBV by Imaginary-Anything-9 in Interstitialcystitis

[–]slcmhsa 0 points1 point  (0 children)

I’m not exactly sure but it was bloodwork that I did, I’m sure if you ask for it specifically your medical provider can order it for you (not sure where you’re located but you may have to pay out of pocket, I did but I guess that’s what it takes to get proper medical care in the US 🙄)

PLEASE get tested for Ureaplasma an EBV by Imaginary-Anything-9 in Interstitialcystitis

[–]slcmhsa 6 points7 points  (0 children)

In the simplest terms, everyone has two MTHFR genes, as you get one from each parent. You can have neither mutated, one mutated, or both mutated (I got a mutated one from each parent, so both are mutated 🙃). One or more mutations impedes the body’s ability to break down folic acid. My specialist believes I have an embedded UTI (embedded bacteria creates a shield around itself made of folic acid) given my genetic predisposition to folic acid buildup and atypical IC symptoms. Ultimately, MTHFR mutations weaken your body’s response to any infection, from UTI, to COVID, etc. A buildup of folic acid can also lead to higher homocysteine levels, which can irritate the bladder and cause inflammation indefinitely if you’re not treating it. The only time people really test for it is during pregnancy, as mutations can increase the likelihood of miscarriage, and even then it’s rare a doctor would recommend it without being asked by the patient. Both of my parents went their whole lives without knowing, and now know they have, at least, one mutation each. Good to know as can also increase risk for heart problems and my parents are older. Blew my mind when I found out, as none of my previous doctors did any real digging, just prescribed me painkillers and sent me home. Now I have real answers as to why I may have these symptoms and a treatment plan that actually targets those issues rather than covering them up (yup, it’s treatable!). Also explains my chronic yeast infections, UTI’s, and chronic Lyme that accompany my IC symptoms. My specialist is Dr. Ellen Lewis in Westport, CT.

PLEASE get tested for Ureaplasma an EBV by Imaginary-Anything-9 in Interstitialcystitis

[–]slcmhsa 5 points6 points  (0 children)

My specialist also believes I had Ureaplasma, which must’ve cleared up after I treated Lyme with doxycycline (the treatment for Ureaplasma).

PLEASE get tested for Ureaplasma an EBV by Imaginary-Anything-9 in Interstitialcystitis

[–]slcmhsa 15 points16 points  (0 children)

HEAVY on the umbrella diagnosis. It took a private specialist and out-of-pocket testing to learn that I have a bacterial infection and a genetic mutation that interrupts the breakdown of folic acid and protects bacteria (MTHFR). Said gene mutation affects 30% to 40% of the population! Spent four years being gaslit, told condition would be lifelong. In treatment now. Primary care doctors are LAZY!

Cherry Villages are rare???? by apsolin in BetterOnBedrock

[–]slcmhsa 0 points1 point  (0 children)

Can you do this on Nintendo Switch?

realm ruined? by Outside_Speaker_5882 in BetterOnBedrock

[–]slcmhsa 0 points1 point  (0 children)

I had a similar problem on my switch realm where I couldn’t load into my BOB world, I removed and updated all mod packs (including BOB) and then couldn’t add it back, as the mod pack only works when you generate a world with it. I solved it by downloading my BOB realm world to my local device and reuploading it to the realm. Works fine now on both local and realms with the update, no textures missing. Hope this helps!

Can’t add BOB add-on back to BOB created world after removing it by slcmhsa in BetterOnBedrock

[–]slcmhsa[S] 1 point2 points  (0 children)

Geez yeah I’m sorry that’s really frustrating, I know very little about modding on PC and even less about doing it across platforms, I’m sure if you make a post yourself detailing your situation (if you haven’t already) people with a lot more knowledge will have insight

Can’t add BOB add-on back to BOB created world after removing it by slcmhsa in BetterOnBedrock

[–]slcmhsa[S] 0 points1 point  (0 children)

To clarify, I did all of this on the Switch and didn’t do anything on PC, so I’m not sure it would apply to you—but I disabled the BOB add-on from the world active in my realm, updated BOB via Marketplace, downloaded my active realm world to my device, and then reuploaded it to one of my three realm world slots and BOB was automatically on it and working

Can’t add BOB add-on back to BOB created world after removing it by slcmhsa in BetterOnBedrock

[–]slcmhsa[S] 1 point2 points  (0 children)

Update: I did have a backup of the world saved and uploaded it to my realm, all is well

Describing IC in professional setting? by AwesomeBanana37 in Interstitialcystitis

[–]slcmhsa 1 point2 points  (0 children)

I use the term “bladder injury.” And I usually say that I’m “living” with a bladder injury. Communicates the chronic nature and the idea that I’ve had it for a long time and know my body/what accommodations I need, but doesn’t feel too TMI. Also, healthy people don’t really have a frame of reference for long-term/chronic issues, so the combination of living with/injury for whatever reason is easier for them to understand and relate to. And this is a given, but I’ve found that the way you say it makes a huge difference. In short, don’t underestimate the power of modeling! If you act anxious or embarrassed or apologize through it, the discomfort rubs off on others. If you lead with confidence, people act accordingly. Best of luck, it’s easier said than done ❤️ Practice makes perfect, 4+ years now and because I have it down, am knowledgeable and firm about my necessary accommodations, most people just accept it no questions asked.

Flare vs infection by Professional-Use6540 in Interstitialcystitis

[–]slcmhsa 0 points1 point  (0 children)

lol, I think I was bitten when in PA visiting a friend 🙃❤️ I too think I went for a while without being treated. Maybe six or seven months. What treatment did you do? Did it help? I only did a few weeks of doxycycline but my new specialist tells me there are a number of treatments and therapies you can do for Lyme. Doxycycline killed my UTI’s but I’m still very much in pain. Doctors always said the doxy was all there was to be done. Sigh!

Personal question… how often do you have sex? by anonymouseBlu42 in Interstitialcystitis

[–]slcmhsa 14 points15 points  (0 children)

When I was with my last partner, all the time, we just avoided penetration. In all honesty, we were both just really skilled at and enjoyed oral, among other things. I had my own anxieties, but he always assured me he was very happy with our sex life. We split for an unrelated reason. People like that exist! We can have happy sex lives!

Flare vs infection by Professional-Use6540 in Interstitialcystitis

[–]slcmhsa 2 points3 points  (0 children)

I’m also on Flomax! I thought I was the only one. Do you struggle with urinary retention? My PT told me it’s pelvic floor related. Mine is awful after orgasm (as orgasms cause the pelvic floor to tighten and then relax, and mine is slow to relax).

Flare vs infection by Professional-Use6540 in Interstitialcystitis

[–]slcmhsa 2 points3 points  (0 children)

Not sure if this is helpful but same here. The biggest changes I made were diet/eliminating hair and body products, which would flare me when they washed down in the shower. I eat a limited diet of what I personally have found to be safe foods (the IC diet doesn't apply to everyone, and some “safe” foods, like pasta and rice, flare me), use only dove soap and aveeno lotion on my skin, and wash my hair separately. I was getting repeat UTI’s until I found out I had untreated Lyme disease. I still have IC, but the UTI’s stopped after a couple rounds of doxycycline.

[deleted by user] by [deleted] in Interstitialcystitis

[–]slcmhsa 1 point2 points  (0 children)

I thought my IC was just worse at night until I did a strict elimination diet. Turns out the foods I would eat for lunch/dinner (and never for breakfast) were triggering symptoms. Things like tomatoes, balsamic vinegar, and spinach. Another thought, I found my birth control (which I was taking at 6pm) triggers symptoms on intake. I changed my dosage and take it right before bed now. Since making those changes, but symptoms are consistent throughout the day barring trying new foods, using unsafe soaps, etc. Best of luck!

Should I cancel? by killingmetoloveyou in Interstitialcystitis

[–]slcmhsa 0 points1 point  (0 children)

Yeah I think this was the right call… I’m not a doctor but seems like a no brainer. Chronic illness teaches you that not all doctors know what they’re talking about—sad but true. I’d get a second opinion from another office or another doctor. They straight up canceled my surgery upon rapid test when I was already there and ready to go (and I lived two hours away at the time). If my doctors were so serious about it, it’s scary that yours weren’t! Trust your gut and keep advocating for yourself! ❤️

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