u/SwordfishPast8963

I just need to vent about the painful irony of my situation right now, it’s almost funny.

So I (23f) have epilepsy and my seizures recently evolved from complex partial to tonic clonic, and I believe the catalyst to that evolution was likely how much stress my body has been under lately. I also have very enlarged polycystic kidneys and endometriosis that is being addressed in surgery in a few months, so there’s a lot going on all at once and I am basically bedridden until said surgery. I can’t drive right now and I feel like the lonely high schooler that has to rely on friends to come and get her or she won’t make it to any hangouts, so I’ve been trying to at least journal to get some of it out, especially on bedridden days.

The kicker? Putting my feelings down on paper keeps triggering focal seizures for me. I have thought too much about a seizure and had it trigger one in the past, but I’m not even journaling about the epilepsy… I’m just writing stuff about my actual emotions. “healthy coping skill” my ass lol!
sometimes I can ground myself quickly and fight off the smaller ones when I start to feel the aura, but I think I’m giving up on journaling for now until I see my neurologist next. If I can’t even write about it, what on earth can I do about the way that I’m feeling? Super frustrating and feels like cruel irony that such a standard coping skill keeps sending me spiraling when I’m not even getting worked up.

Anyway, I’m gonna post this before simply typing this out triggers one… Thanks for letting me get that out. I hope everyone has a good day.

i (23f) am going in for diagnostic lap and excision for endometriosis. my gyno did an MRI to map out where my kidneys sit first, and said she grew a new gray hair after seeing it. she said the ports will have to be made in a slightly different place than usual, and i’m so worried that the surgeon won’t have experience with PKD. anyone else get this surgery and have everything go right??

hey all. i (23f) have polycystic kidneys and tonic clonic seizures and a couple other things that just go to show that I’m not winning any genetic lotteries lol.
I’m currently undergoing evaluation for endometriosis and I just had an MRI to map out exactly where my kidneys sit because they are enlarged, and that will complicate the laparoscopy.

What concerns me is this distinct pain that keeps coming back to my chest. I can’t differentiate if it is truly inflammation pain or if it is referred pain bouncing around in there, but I’m hesitant to dismiss it as the latter because it keeps coming back to the exact same spot under one breast and in a parallel spot around my upper back. That’s the spot where it started, but now when things flare, I can feel it elsewhere in my chest and sometimes really sharp directly in between my boobs. When everything else flares, breathing becomes genuinely painful. I’m concerned that it might make things more complicated working around my giant kidneys if they have to enter at the ribs to check for any pleural involvement.

Is this something I should seriously stress to the care team before they go in? Anyone that had lots of intense chest pain turn out to not have the thoracic kind? I know this is a full body inflammatory disease, it’s just throwing me off that it keeps coming back to the exact same spot.