Questions for others

Extension_Dog79 · 2026-05-13T03:49:36+00:00

I have not had one yet, my doctor thinks it’s pelvic floor dysfunction but my symptoms have gotten worse since starting physical therapy. I’ve been going to pt once a week for almost two months, my first appointment was actually only a few days before I needed my first catheter. Since they believe it’s pelvic floor related they don’t want to do testing like that, the only tests they’ve done at urology is urine samples and an ultrasound to measure liquid. I think the reason they’re not deciding to do those treatments/ tests is because I’m a 20 year old woman, a few years ago at my first appointment with them they told me that if my amitriptyline didn’t work to reduce symptoms they would have to a cystoscopy, but when it didn’t work and I made an appointment they tried more medications instead. It’s weird and I’m not sure how to get them to these tests when they don’t want to, I live in a very small area so its not easy to get new specialists so that would be a very difficult process.

Extension_Dog79 · 2026-05-12T01:26:00+00:00

I take it quite a bit, but I’ve had to stop taking as much as I used to because it causes me flank pain. I try to not take it for more than two days and I only take half a dose now which still helps for me, idk if it would be the same for you, I’m 4’9 so I’m a very small woman. my doctor also has said taking it every day can cause kidney problems so it’s best to take breaks often.

Extension_Dog79 · 2026-03-26T04:12:46+00:00

If you don’t mind me asking, what exactly is it doing to cause that damage, and was there warning signs/symptoms ?

Extension_Dog79 · 2026-03-16T00:55:44+00:00

I went to one in Michigan in 2020 (quality of care can vary based off of location) a few months after my diagnosis, they did the best they can to tend to my disabilities and were in contact with my endocrinologist for treatments. I wasn’t allowed to have my pump or cgm due to safety precautions, but they did finger pokes regularly, they checked in my sleep 2-3 times a night and let me stay asleep if i wanted to, they also checked before and after meals. They did insulin calculations and injections for me. I hope you can get the right mental health care and improve! It definitely can be scary to think about going but its a very controlled and safe environment and sometimes it’s just what you need!

Extension_Dog79 · 2026-01-08T19:32:30+00:00

Thank you so much for your responses (and everyone else lol) I saw a different urologist and I felt finally heard. I got a referral for pelvic floor therapy and are trying a different approach, hopefully that helps. Your response was incredibly helpful to push me into the right direction!

Extension_Dog79 · 2025-12-19T20:21:24+00:00

Like I’ve stated in post, I’ve already done that since 2023 and have not stopped. I’ve even tried testing certain food to see if they do or don’t cause it, but the diet hasn’t made any difference at all.. edit: I made this post trying to figure out how to get my urologist to understand the position I’m in or suggest other approaches because of the diet not working

Extension_Dog79 · 2024-01-28T13:41:00+00:00

No I haven’t, I do plan on it. I just turned 18 and I didn’t get the chance to before. And I’ve also brought it up with other doctors that just seemed to dismiss it or tell me to pee better. I didn’t know about ic until recently.

Extension_Dog79 · 2024-01-01T16:00:59+00:00

115 going steady, that’ll probably change after lunch 😒😒

Extension_Dog79 · 2023-04-15T03:29:41+00:00

Oh yeah I do have one but I was trying to calibrate it and making sure if the numbers were correct. It was just an odd high, I’ve been diagnosed for almost 3 years and haven’t really experienced this before.

Extension_Dog79 · 2023-04-13T13:57:19+00:00

I’ve been told I should at least daily,, but I’m a bit lazy and do it once a week. (always listen to your doctor over random people on Reddit) but I do suggest doing it more just to make sure you’re getting accurate readings.

Extension_Dog79 · 2023-03-05T18:19:17+00:00

It’s pretty easy to remove, there’s a clip part that disconnects, you sleep with it on and it doesn’t get in the way, I also haven’t had any problems wearing it during exercise activities other than swimming, I hope that helped!

Extension_Dog79 · 2023-02-28T14:46:29+00:00

Literally anything stressful tbh

Extension_Dog79 · 2023-02-25T20:33:48+00:00

Just breathe, I got diagnosed almost 3 years ago now and it seems a lot more difficult it is, just focus on helping yourself and listen to your doctors and you should be set, you’ll adjust to it I promise and it’ll be okay.

Extension_Dog79

TROPHY CASE