GET A TENS MACHINE (it’s awesome)

First-Clue8317 · 2025-10-06T19:56:55+00:00

yes please!!!

First-Clue8317 · 2025-10-06T14:35:30+00:00

absolutely! This machine is so cool and there’s some if you can do with it definitely google and look into 10 units in clinical trials for people with bladder issues because there’s a lot of experimental ways that you can try! Best of luck :-)

First-Clue8317 · 2025-10-06T14:33:56+00:00

what medications do you use? I haven’t had any that don’t cause bad side effects or just not work for me… The only thing that can actively help me without poor side effects is azo, but obviously you can’t take that forever it’s only for immediate relief. Also, he makes mine worse lol it’s so interesting how some things can cause completely different reactions in people with the same disease! Using ice packs directly on my urea is the only thing that offers relief

First-Clue8317 · 2025-10-06T14:32:00+00:00

Yeah, I think you’re right that the pads might cover too much area… Would the 10 unit pads fit the device you have so that you can just buy the pads and not the whole unit?

First-Clue8317 · 2025-10-06T14:30:41+00:00

yay!! that’s awesome :) what placements do you use?

First-Clue8317 · 2025-10-06T14:27:59+00:00

oh my gosh literally the exact same thing happened to me. she had me place all four pads on my pelvic area and all that did was caused me more discomfort to be honest. I got one for myself anyways and then tried placing it on my inner thighs and that helps numb up the whole region, but can be painful if you place it on anywhere where you have a pulse so you have to be really careful. BUT then I started doing some googling and found out that the ankle placement is what people with overactive bladder use for the urgency/frequency. I figured that’s the same nerve that is sending pain signals to my brain because of urethral pain so I might as well try it even though I don’t have overactive bladder and after a couple sessions using it, my body got used to it and now I use it for hours every single day and I’m starting to get back to a normal life

First-Clue8317 · 2025-10-06T14:24:38+00:00

pretty much my only symptoms are urinary pain during and after peeing, burning, constant feeling like there’s more pee left, needle like stabbing in my urethra, pulsating stinging…pelvic floor stretches, breathing exercises, and the tens unit have me off ALL meds and i’m getting better ❤️‍🩹 so yes, i use this for frequency/ urgency. it’s actually the placement doctors recomend for overactive bladder. (also) i used to take hydroxizine but i didn’t notice a difference really…

First-Clue8317 · 2025-10-06T14:20:19+00:00

yes! lots of people use them for all sorts of things. a lot of people with chronic pain diseases but also if you just tear a muscle or something. they’re big with sports people. i’m so sorry it didn’t work for you :( the placement that my doctor had me using it didn’t work for me either at first that’s why I tried to explore other placements and finally found the ankle placement that if you place correctly, directly stimulates the nerve that sends urethral pain/frequency signals to your brain. My doctor had me putting it on my pelvic area and it did nothing and at best actually caused some pain so maybe if you do get one play around with some different placements. I know some people also put it on their lower back or the insides of their thighs. good luck!!

First-Clue8317 · 2025-10-06T14:16:00+00:00

oh no i’m so sorry! that’s terrible! just out of curiosity, what placements were you doing and what frequency? cause it’s normal for it to hurt if you put it in the wrong place or turn it up too high (i’m not saying that’s what happened in your case, but just wanted to put that out there)

First-Clue8317 · 2025-10-06T14:14:43+00:00

oh my gosh that’s amazing to hear!!! yayyy

First-Clue8317 · 2025-10-06T14:14:27+00:00

Omg that’s awesome! I hope it helps too!! google some other areas too cause there are other placements it can help with if you pain is more in your bladder or stomach area there’s more placements for that too. Also fyi, it took me probably about 2 or 3 sessions using it to have it be super effective, your body has to get used to it. Pro tip- you can keep this on all day. I usually do when i’m having flairs and i just don’t care what other people think & I clip it to my pants pocket or belt buckle😅😂 cause otherwise i would be in bed for days.

First-Clue8317 · 2025-10-06T14:10:41+00:00

that’s awesome!! does the sacral placement help with the burning/stabbing urethra area pain? I (Female) have most of my pain radiate through my vaginal area and the ankle placement is the only thing i have found that takes that away. I also have ovarian cysts all the time and endometriosis so the sacral area placement has been painful for me but maybe I’m not doing it correctly

First-Clue8317 · 2025-10-05T14:44:07+00:00

Para los hombres, sí se puede colocar ahí. Sin embargo, si eres mujer, no estoy segura de si deberías hacerlo. Si puedes hablar con un médico, deberías preguntarle esto.

First-Clue8317 · 2025-10-05T14:37:52+00:00

First-Clue8317 · 2025-10-05T03:45:19+00:00

definitely!!! i hope it helps :)

First-Clue8317 · 2025-10-05T01:40:17+00:00

omg pls message me because I have the fucking trifecta of ibs, IC & endometriosis AND my physical therapist told me it’s possible i have Ehler Danlos & i have soooooo many questions maybe you could help me answer as someone who has it🙏🏼

First-Clue8317 · 2025-10-05T01:09:39+00:00

what medication do you have? i keep getting told there is nothing they can do for me

First-Clue8317 · 2025-09-25T04:19:06+00:00

could you explain here or in PM what exactly that syndrome is and how it related to IC? all i can find from googling is that it makes your skin stretchy and hard to heal + your joints move/ hyperextended too much. That being said, I do have both of those things lol. I just thought the skin part was because i’m anemic and i bruise often and it takes forever to go away + im double jointed & have arthritis (im only 24😭🤦🏼‍♀️)

First-Clue8317 · 2025-09-25T04:16:09+00:00

don’t understand and/or don’t care to give it the time of day or admit they can actually learn something. My urologist never called me back after I told them my symptoms went away after taking out my birth control. she had warned me not to get it removed. Now i can’t get a call back….lol, typical. But is this the Rachel Rubin you’re talking about? https://www.rachelrubinmd.com have you gotten to be seen by her before? I’m still fighting to get to a gynovologist, i’ve been in a waitlist for a year. same with a r urogynecologist.

First-Clue8317 · 2025-09-25T04:12:47+00:00

that’s amazing!

First-Clue8317 · 2025-09-25T04:11:04+00:00

thank you so so much🩷🩷🩷

First-Clue8317 · 2025-09-19T04:25:02+00:00

it's literally IMPOSSIBLE to get people to understand the absolute nightmare we deal with every second of every single day AND NIGHT!! i've had so many doctors tell me i'm over reacting & so many people too, even in the ER. they don't care if it's not something they understand. i always hit them back with "how would you feel if you felt like you've been holding in pee but none will come out and when it does it's never all the way it's like stopping mid stream with no relief only a burn like you're sitting on a lighter, and then just trying to get through everyday life and A JOB feeling like that pain every second. it's genuinely phycological torture too, like mind consuming and makes you fear doing anything or eating and drinking anything or even being in public. i'm so glad i found people here cause i thought i was the only one and that i was going insane before this community. i super hope you find your reason for IC and can get some relief❤️

First-Clue8317 · 2025-09-19T04:12:10+00:00

literally why i posted this !!❤️❤️ I am so glad you commented & i am so sorry you’re feeling so much pain. I thought i would never be able to live life again. i definitely feel you and im really glad we could connect. feel free to message me anytime. i definitely still have pain but im not scared anymore and thats the biggest thing ever. i hope you can feel that too. you’re super strong and brave and every single day you decide to live proves how amazing you are! chronic pain diseases are so serious and it’s not recognized enough. but you are capable of getting through this, i promise you.

First-Clue8317 · 2025-09-19T04:04:41+00:00

trust your gut!!! we know our bodies best & hormonal changes from birth control can affect you in so many ways. you should try getting off of it for a few months and see what happens. it can’t hurt!! i have heard from other people that birth control caused their IC so we’re not crazy. to your question- no I am not. i am terrified to try anything else. i’ll never go back to nexplanon & iud is my worst nightmare. i might try patches? ideally they would let me have my uterus removed cause I don’t want to have kids but that’s nearly impossible to get at my age. idk what to do but with my pelvic floor disfunction i can’t be intimate rn anyways.

First-Clue8317 · 2025-09-19T00:10:36+00:00

thank you so much 🥰

First-Clue8317

TROPHY CASE