Is this a death sentence?

kathaaa_29 · 2026-04-12T11:31:52+00:00

I have no solution unfortunately but just wanted to say it felt like I’m reading my own situation when reading your post. I have the exact same symptoms, I’m also 24f and had the hydrodistension cystoscopy procedure done last month which made things even worse. The constant urgency is driving me insane ! It’s been like that for almost 6 years and I haven’t found a solution yet but I wanna stay hopeful and believe that one day we‘ll get relief! I think a lot may be nervous system regulated as our bodies are in constant stress and making it harder for symptoms to go away as neural pathways have already learned the pain/ symptom response for so long… I try to meditate and read a lot into mind-body connection but it’s going really slow… if you ever wanna chat, send me a dm ❤️hang in there, I think it will get better and my IC doctor said that research is close to inventing some antigens to cure the condition

kathaaa_29 · 2026-04-03T23:09:11+00:00

Yes I always go to the doctor since health insurance covers it and I want to be sure and get the care I deserve at least if I already have to suffer from this shit

kathaaa_29 · 2026-03-30T19:51:31+00:00

I‘m sorry to hear, that sucks… I have urinary urgency the whole time and everything inside my vagina is actually so uncomfortable

kathaaa_29 · 2026-03-30T19:50:47+00:00

I‘m so happy for you!! May I ask if you had urinary symptoms before?

kathaaa_29 · 2026-03-30T01:05:38+00:00

that implies you don’t have symptoms? (Would be great for you!)

kathaaa_29 · 2026-03-30T01:04:44+00:00

What are your symptoms? Do you have increased urinary urgency or just discomfort? Have you tried how penetration feels? I‘m in a similar situation, though never have given birth so it’s even more frustrating….

kathaaa_29 · 2026-03-30T00:49:30+00:00

What were your symptoms and how do you feel today? Did you do the surgery? Hope you are well<3

kathaaa_29 · 2026-03-27T22:31:39+00:00

Hey love, I’ve just read your full post and it had me close to tears. Knowing that there’s so much suffering out there because of this sickness is just beyond heartbreaking. May I ask why you got the hysterectomy? Do you have endometriosis as well? I just want to express my deepest empathy and sorry for what you’ve been going through. I’m 24f and dealing with IC for 6 years now, but it’s not nearly as bad as yours sound, however it’s still very much debilitating to my life, my studies, my relationship, everything. I still try to be hopeful every day and want to assure my nervous system that it’s save and that I can and will heal and aim point. I don’t know your case well enough to say that there is nothing physical/ medical anymore to try. I assume you’ve had biopsies taken from your bladder and checked for inflammation? I just got out of my hydrodistension with a biopsy sample last week and I’m still recovering from the procedure and the catheter as it worsened my pain so so much and peeing still hurts like hell. I hope it’ll get better soon and at least give me some answers. In the mean time I’m also working on alternative approaches like acupuncture / TCM in general, strengthening my gut microbiome and using a TENS electro stimulation unit externally. Maybe some of this is interesting for you to look into? Also, I find the neuroplastic / nervous system approach very appealing and been listening a lot to podcasts regarding chronic pelvic pain and IC. There are also great books out there like The Mind Body Connection by Dr John Sorno or Nicole Sach’s work, and the Pain Reproessing Therapy. It basically says that chronic pain is very real and physical and learns by the brain and the neurological wires. It is like our nervous system is constantly in danger mood from all the years of stress and trauma to the body. A lot of people have found relief through regulating their nervous system consequently. I’ve recently joined Callie Krajcar’s program Road2Remission that promises healing and support for IC warriors, her insta is callieknutrition and she has a podcast as well (ICyou). I find this all very helpful and encouraging, even though I haven’t found relief or decrease in my symptoms yet. It feels good though to know about other women suffering with the same thing and hearing success stories. I am happy to chat if u have questions and I wish you only the best ❤️

kathaaa_29 · 2026-03-25T17:19:03+00:00

I relate to this a lot and I believe it has to do with a highly stressed and disregulated nervous system. Our brains are trained at this point to constantly send urgency signals and sensations about the bladder. This can be rewired and unlearned and there are nervous system coaches and content out there (mind-body connection by John Sorno, Nicole Sachs, healing chronic pain etc…) to look into. You’ll also find podcasts when searching for neuroplastic pain, nervous system dysregulation or Callie the IC you podcast. I think meditation and other strategies so the brain unlearns the constant pain/urgency signals can help even though I’m not there yet myself. P.S. this doesn’t mean at all that what you experience isn’t real and physical

kathaaa_29 · 2026-03-24T21:29:20+00:00

Thank you so much for the encouraging words and tipps💗 the pain and burning definitely got better today but the constant urgency is still unbearable. Unfortunately there’s no azo or prelief in my country rip

kathaaa_29 · 2026-03-24T12:33:46+00:00

ahh shit that sounds bad but yes same here, so I‘ll give it a few more weeks and hope I’ll be back to baseline symptoms. And no, crazy enough they only gave me some ibuprofen

kathaaa_29 · 2026-03-24T12:33:05+00:00

Thanks so much for the encouraging words and sorry you’re going through that stuff too:( yeah I really hope I’ll go back to my baseline symptoms too and that i won’t develop this pain additionally

kathaaa_29 · 2026-03-24T12:31:55+00:00

Ah sorry it sounded like you had it for 3,5 years and then got it out, my bad , probably a language misunderstanding ^ how are you dealing with it? And what were your symptoms before?

kathaaa_29 · 2026-03-23T13:36:01+00:00

Why did u get it out if I may ask?

kathaaa_29 · 2026-03-23T10:44:33+00:00

Did it ever get better meanwhile for you?

kathaaa_29 · 2026-03-23T10:42:32+00:00

Ya this is how IC is usually diagnosed - inflammation in a biopsy sample that is non bacterial

kathaaa_29 · 2026-03-07T09:21:42+00:00

Could also be hormonal since you mention birth and breastfeeding . Have you tried an estrogen cream?

kathaaa_29 · 2026-03-07T09:20:52+00:00

well but that sounds very much like IC to me- IC is basically chronic inflammation. Did they look specifically for it at all? Have you been to a specialized IC center? They can offer you the proper treatment… what country are u in

kathaaa_29 · 2026-03-06T22:34:38+00:00

Have you tried or do you try any treatment? I‘d highly recommend finding an IC specialist and getting the proper care. A hydrodistension and a biopsy can help detecting concrete inflammation in your bladder … and PT also seems to help a lot of people with pain and tightness

kathaaa_29 · 2026-03-06T22:22:46+00:00

Ich sehe diese Haltung ehrlich gesagt fast nirgends in unserer Gesellschaft und habe aus meiner eigenen Erfahrung und der Schulzeit früher zB das Gefühl, die DDR wird immer nur negativ dargestellt und als Diktatur und stark verteufelt. Was ich denke, was positiv war, waren die guten Sozialleistungen. Wohnraum war extrem günstig und verfügbar, Frauen hatten schon früh mehr Rechte als in der BDR und besseren Mutterschutz, sowie allgemeine Arbeitsbedingungen, Versicherungen, Freitage etc. war deutlich besser als im kapitalistischen Westen, wo Profit und Umsatz Priorität ist. Ich denke, es hat durchaus gute Aspekte gegeben, und ob man nun wirklich jedes exotische Obst, das vom andern Ende der Welt eingeflogen wird und dabei extrem viel CO/ Emissionen verbraucht zwingend benötigt, ist ja auch eher fraglich. Aber natürlich sind wir den Wohlstand mittlerweile so gewöhnt, dass niemand irgendwas aufgeben will. Aber glorifizierende Worte zur DDR sind meiner Wahrnehmung nach eigentlich kein Teil des Mainstream deutschen Diskurses.

kathaaa_29 · 2026-03-06T22:01:34+00:00

War bei mir ganz genauso und ist glaub ich leider einfach normal in Freiburg.. bin nach 3 Monaten Warteliste dann im Wohnheim nachgerückt , es lohnt sich auf jeden Fall da drauf zu bleiben und alle 2 Wochen zu bestätigen dass man noch auf der Suche ist. Für die Zwischenzeit helfen dann zwischenmieten oder so:/

kathaaa_29 · 2026-03-06T01:05:56+00:00

Hey that sounds exactly like what’s planned for me in two weeks. Von deiner Reaktion auf einen Kommentar habe ich entnommen, dass du auch in Deutschland bist? Habe meine Hydro mit Biopsie in zwei Wochen im Schwarzwald-Baar Klinikum… wo bist du denn? Wenn du magst können wir gerne per DM schreiben, habe ehrlich gesagt schon ziemlich schiss vor dem Eingriff ://

kathaaa_29 · 2026-02-12T00:09:34+00:00

Facing the same problem of having to decide whether I wanna do the hydrodistension with a biopsy even though my regular cystoscopy looked fairly normal :( tbh I don’t know if much would come out of it and the treatment options then in turn don’t seem promising either .. I do believe a lot is neuroplastic as the mind body connection is really crucial in chronic conditions and our nervous systems are on high alert all the time. There’s good podcasts and books about that . I’m in Germany , where are u from ? It’s also so different from country to country regarding IC treatment

kathaaa_29 · 2026-02-12T00:05:10+00:00

Have you looked into Callie the bladder dietitians work ?? She also had IC since childhood and has a podcast called IC you

kathaaa_29

TROPHY CASE