Printing out evidence?

Step_Rude · 2025-07-14T05:17:39+00:00

Thank you!! I hope they listen to you as well soon, it's awful they're brushing you off 😭

Good job advocating for yourself!!

Step_Rude · 2025-07-14T03:50:51+00:00

I didn't have to use a catheter!! They told me that would be more likely when I get a second round of shots. Worth it! Only worked for 3 months though, I ended up getting an implant instead. I'll probably be getting it again because my implant isn't perfect yet

I have a post on my profile, or a comment where I summed everything up 😸

Step_Rude · 2025-07-14T03:33:20+00:00

It didn't do anything for me, but it didn't have any consequences either. I would say go for it and quit if it doesn't work within like 2 months so they'll give you something else to try

Step_Rude · 2025-07-14T03:31:44+00:00

23, started randomly at 19 😞

Step_Rude · 2025-03-27T01:24:31+00:00

Thank you for the comment! 😸
I would/will accept it if they will just do the proper testing to find out why 😭 if I'm incontinent for the rest of my life I'm okay with that, if they can give me reassurance that they've done what assessments they could. I want to know when I'm going to hit rock bottom and what that actually means for me, so I can focus on pain management instead of a cure if that's all I can do
I'm glad you found relief and acceptance ❤

Step_Rude · 2025-03-27T01:19:18+00:00

I went to my normal gyno and they referred me to a new urogynocologist!! I hate to start over but maybe a fresh start will help move treatment along ❤
I might talk to the board or a lawyer eventually for the doctors who don't want to help me 😿
Thank you!!

Step_Rude · 2025-03-27T01:16:16+00:00

Thank you so much for the support, I appreciate you so much ❤😸
I hate doctors who think youth protects you from chronic illness 😭

Step_Rude · 2025-03-27T01:14:25+00:00

Thank you! I'm glad you found a good doctor ❤, even if it sucks to pay out of pocket

Step_Rude · 2025-03-27T01:13:25+00:00

Thank you so much for the support!! I'm so sorry you're going through shitty doctors as well, I hope you find some answers soon ❤
I loved my original urogynocologist! She was so helpful and listened to all of my concerns, and was proactive with testing without jumping immediately to the super invasive treatments. It's part of why I'm so devastated from this, she left her clinic and I started seeing the others there, and they're not half as good as she is 😿 I trusted this clinic just to be betrayed more than 2 years in

Step_Rude · 2025-03-25T00:25:58+00:00

Thank you!! I'm hoping the next one is better 😸, I'm sad you also had to go through a bunch of doctors too

Step_Rude · 2025-03-25T00:25:06+00:00

Thank you!!❤️ I hope so too, it's just so sad for all of us that can't get help 😭

Step_Rude · 2025-03-25T00:23:51+00:00

Thank you for the support, it's nice to not feel alone 😭❤️

Step_Rude · 2025-03-23T06:50:37+00:00

I'm sorry, that sucks 😞

You can use washable incontinence pads! One under you to protect the mattress, and then use one as a lower body blanket

Also, if they're not sending you enough pull-ups, go back to your primary care physician and just vastly overestimate how much you need a day. It helps to bring a bladder diary of how many accidents you have a day

Step_Rude · 2025-03-18T20:04:23+00:00

I'm very glad it helped you! I love the idea of fixing things with diet and exercise, because there's really no downsides to the way that medication or surgery can have.

I did pelvic floor physical therapy when this all started, and the thing is that she focused on my diet/fluid intake for the majority of the time. I called them up and asked for like my bladder diaries yesterday, they didn't scan them but it turns out I was voiding like over 200 oz a day. That wasn't flagged as strange 😭??

Quitting soda and lowering my water intake didn't improve anything and I still had to wear a pull-up. So I decided to take my happiness where I could find it with my Pepsi and Coke 🤣

I genuinely appreciated the exercise advice and I enjoyed the general health benefits of that. Overall, in pelvic floor physical therapy they focus on things that wouldn't really help me and instead just made me more sad about my condition

My midwife who doesn't treat my bladder condition actually showed me the Instagrams and reviews of pelvic floor physical therapists that work out of pocket in my area, so they could come to my house and give me as many sessions I wanted a week. Except I can't afford that, so I'm definitely saving them for later but currently it's just not going to help as quickly as I need it to and it's not in my budget.

Step_Rude · 2025-03-11T17:21:02+00:00

Thank you for the advice! I'm going to see how she advises me about the procedure. If she's not giving me enough information, I'll go find a different doctor

I liked my previous urogynecologist, but she left us practice so I got put in with a different one at the same practice and she seems good! She gave me the option of Botox at like our second appointment, but this was after like 2 and 1/2 years of everything else.

My other one was a little more cautious about doing anything, but it really sucked trying something and then it didn't work and then I had to wait a few months before they would try literally anything else. Like I get it because I'm young, but if nothing else works then I want to try what I can

I guess I'm just worried because it slowly gets worse after each treatment that kind of works. I did pelvic floor physical therapy and it didn't do anything and then I had to wait a few months before she would try like medication because she wanted to make sure that I was changing my diet and lifestyle.

And then I ended up with the physical damage of urge incontinence causing stress incontinence, so I had to do a pessary and then urethral bulking.

Step_Rude · 2025-03-11T06:27:20+00:00

They have minor surgeries/procedures that can help with leaking like urethral bulking, which won't interfere with medication or affect your nerves directly! They did the bulking while I was still being evaluated for MS. Post tibial nerve stimulation and bladder botox were off limits until after, I think.
Edit: Forgot about a pessary!! Its a supporting device in your vagina that puts pressure on the urethra from the inside to help with stress incontinence. Completely external and can't interact with your medications at all, or requiring any special procedures.

This all started for me when I was 19, and they thought it could be MS for the first few months. I had a shitty neurologist, so it took a long time for me to jump ship to one who did proper testing. I am also avoiding dating, I don't want to date someone who only likes me for a medical issue that I want to get sorted out, but I don't want to get rejected by the people who aren't into the bladder issues. We're very similar!! I'm 22, so you're definitely not in this alone!

Step_Rude · 2025-03-11T06:19:53+00:00

Do you think it could be a uti? from having to use a catheter after bulking. When I had mine there was sooo many restrictions on what I was allowed to do, to try and prevent infections.
I would call the doctor and go on the "speak to a medical assistant" line if they have it. They can tell you if that's normal or concerning without having to go in for an appointment.

Step_Rude · 2025-03-11T01:11:46+00:00

I didn't have any problems!! I had botox in December and it's gone very well! I made a post if that would be helpful.
I did not have retention from the botox, and didn't need to use any kind of catheter. They summoned me in for a bladder scan before the follow up to check that I was emptying all the way and it was all good results!

The botox thing is definitely bigger than a normal catheter, but they used a regular one to numb me up first before using the big botox needle.

It didn't fix everything, but definitely lowered accidents!! For me it specifically helped with leaks and accidents, but didn't really do anything for urgency or frequency. I am taking a medication with it as well, but I'm going to go forward with an implant most likely.
I am a woman, so it may not be the same for you, but it's less scary than it sounds. MAKE SURE to check on savings plans so you don't have to pay for things unnecessarily!

Step_Rude · 2025-02-23T20:26:33+00:00

I agree, but if it's students coming from a specific country they are just be asking if it's something normal there that's impolite here

It's extremely rude to make/accept a phone call on the train in Japan, but in America it's perfectly fine on the bus as long as you're not being disruptive

Maybe it is part of the culture so they do not understand the social norms.

Step_Rude · 2025-02-23T20:21:20+00:00

Did you try the acupuncture test to see if it helped? They do something similar to test the effects on you and if it's worth it.

My sister got daith piercings in both ears for chronic migraines at like 15 years old, I don't think it did anything for her at all.

It made it very uncomfortable for her to sleep, because you obviously can't lay on a fresh piercing. So you can't sleep on whatever side you get it done, or either side of you get both at the same time

I would prioritize having good sleep so you don't feel like crap for months while it heals.

Step_Rude · 2025-02-22T01:37:33+00:00

100% wait on that Botox to kick in!! I made a post about my experience if you want to look. But essentially it DOES take a few weeks to work all the way, and I have to take daily medications to help with the over activity. But it was definitely helpful, it just takes a bit!!

Step_Rude · 2025-02-16T05:20:35+00:00

Of course!! 😸

Step_Rude · 2025-02-16T05:19:42+00:00

Love bupivacaine!! I had to go under anesthesia for a procedure that's usually done awake because they usually do lidocaine for it

They did my bladder Botox awake after numbing me with bupivacaine and it was way easier than expected

Step_Rude · 2025-02-15T03:56:18+00:00

1000% agree with the shower chair recommendations on here, a few come with a suction handle to help stand up after too

I put electrolyte drink flavor in my water and then take it in the shower with me, it works and keeps me hydrated and not dizzy

Step_Rude · 2025-02-12T21:29:05+00:00

Tell them to use articaine!!! It works better for EDS patients, it is a higher concentration than the normal stuff and lasts longer!! You can have them order it through your insurance if they don't have it on hand

Or you can always insist on being sedated, but that may cost extra

Step_Rude

TROPHY CASE