u/Scruggssa

So I’ve been dealing with uti like pain for heads and years prob since I was 18-19 now I’m 22, I was told for a long time that I had interstitial cystitis. For a long time I was also bovines between different doctors that would all just send me back to the urologist again. Today I had a check up after they tried to give me steroids to see if it helped and now they think I don’t have IC because my pain is mainly urethral. They want me to go to a gynecologist and rule out endometriosis. And I’m just very scared and confused. And almost having some sort of diagnosis ripped away from me feels so weird. I also had an mri a few weeks ago and they said I had a cyst but not one big enough that it would be causing issues? Idk anymore I just wanna cry I’m so scared and I can’t work and I feel so useless I’m so tired

Just asking bc I never know

I think we need better at home healthcare options for people with severe IC.
This partially isn’t about the IC itself it’s the fear of having a UTI or some other infection and it being masked by the IC. I can’t bring myself to stand most times I’m sobbing and can’t even do the car ride let alone sit in an office waiting and peeing in that cup there. It’s excruciating.

I think people with severe/documented IC should be able to have a care plan with their doctor that could allow for things like at-home urine collection for a urinalysis/culture when it’s medically appropriate, a nurse or healthcare professional coming to the home to collect the sample, basic vitals/assessment, and telehealth follow-up with their doctor.

I’m not saying everyone with IC needs antibiotics or needs to be tested constantly. I’m saying there should be a way to get evaluated without the physical act of leaving your home being the thing that prevents you from getting care.
And I really don’t think home healthcare should automatically be thought of as something only elderly or permanently bedridden people need. Im a 22-year-old with severe IC that leaves pretty much disabled sometimes.

I’d genuinely like to advocate for something like this in the future because I don’t think people with severe IC should have to choose between unbearable pain at home and unbearable pain just to get medical care.

Let me know your guys thoughts on this! Also please be nice 😭 sorry I wrote this while I am upset and my head is spinning.

Looking for someone who can relate to me skeins my age so I feel less alone and understood. I’m female 22 years old. Idk let me know 😭❤️❤️

Does anybody else feel like when they’re having a flare up and in pain they have to be completely alone and nobody around them . I don’t fully understand why I feel that way but also I’ll be sitting in the weirdest positions and just wanting to not exist idk. It’s so hard because I feel like I can’t do the things I even wanna do. And I’m trying to get disability because I genuinely just can’t work and the mental stuff with this combined is too much for me. Idk let me know ur experiences please I don’t know anybody else with this condition and I feel alone.