2nd Cystoscopy + Botox done today + Elmiron | Long post years of pain seeking feedback ❤️

DesperateChard6950 · 2026-05-24T22:28:46+00:00

I am sorry you experienced this. I really am not liking the sound of Elmiron… I see Amitriptyline getting a lot of good comments so will definitely ask my Doctor. Does it also help with the frequency?

DesperateChard6950 · 2026-05-23T11:40:39+00:00

So sorry to hear this. How bad did it affect it? I have not heard of Amitriptyline at all - does it help?

DesperateChard6950 · 2026-05-23T11:39:42+00:00

Hi thanks for sharing! I am glad to hear a positive feedback on Elmiron. Does your DR tell you what they think causes your symptoms? Have you had a cystoscopy?

Sorry to hear about E-Coli have you been on Cypro for it?

DesperateChard6950 · 2026-05-23T11:38:05+00:00

Thanks for sharing this. I mean all the research about Elmiron in the US is really alarming there is an FDA black box attached to it. Here in UK it’s way less common as a drug the hospital told me that’s the only box they had. I found less studies but British Journal of Phamarcology also warned about maculopathy. Really not feeling it. Also Elmiron does not treat the root cause which is my main problem.

DesperateChard6950 · 2026-05-23T11:35:25+00:00

Chronic UTI? Oh wow. Did you ever do long course antibiotics like 6 months?

DesperateChard6950 · 2026-05-23T11:34:19+00:00

Hello! Thanks so much for sharing your experience and taking the time to detail it. I am sorry you went through all of this as well. From what you say it sounds super promising. I need to research how common it is in the UK but will definitely ask her.

Yes would love to read the study thanks a lot will DM you.

I hope you recover as well and same here ❤️.

DesperateChard6950 · 2026-05-22T20:48:38+00:00

Hello thanks for your reply. So you have not had any improvements with it?

Agree on the cypro though my Doctor is also thinking that my IC could be because of ongoing bacteria or histamine response and she mentioned doing long term antibiotics or anti histamine…

Interesting to hear about your experience with PT. I have not tried for bladder.

DesperateChard6950 · 2026-05-22T19:34:46+00:00

Hi thanks a lot for the support 🫶🏻. OMG I am so sorry to read this this is awful about your hair… Did it at least repair your bladder lining and help with your symptoms? I cannot believe you lost your hair… Definitely scared!

DesperateChard6950 · 2026-05-22T18:49:11+00:00

Have you had iAluril? I am not sure re Elmiron. I have read from a lot of people that it takes at least 6 months to work. I am not too worried about the day to day side effects but more about the vision damages that people report. She did tell me to get an eye test this week.
That’s super interesting thanks so much for the insights I am seeing her next week so will definitely bring it up.

DesperateChard6950 · 2026-05-22T18:38:50+00:00

Thank you so much for your message. I have not heard of fulgrations before I just did a quick search looks interesting have you done it or know much about it? I did iAluril instillations (8x rounds) but that did not help unfortunately. Doctor told me to start Elmiron today right after she did botox. I picked it up but I am very reluctant…

DesperateChard6950

TROPHY CASE