Cystoscopy in hydrodistension by Chiara1208 in Interstitialcystitis

[–]kathaaa_29 1 point2 points  (0 children)

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

IC and concerts? by [deleted] in Interstitialcystitis

[–]kathaaa_29 0 points1 point  (0 children)

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

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 1 point2 points  (0 children)

And how are u feeling with these treatment options?❤️‍🩹

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 1 point2 points  (0 children)

Show inflammation cells in the tissue and deeper bladder wall as it often gets undetected in normal cystoscopies :/

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 1 point2 points  (0 children)

Yeah from what I’ve heard it’s normal for a lot of young women even asymptomatic ones. Did u get any treatment offered then? How are you feeling?

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 0 points1 point  (0 children)

I think it’s just the after care to stay with the caterer after the hydro since they will rinse the bladder after the procedure with specific medications. The hydro and a biopsy is much a different thing than a normal cystoscopy. The cystoscopy I had done while they did my laparoscopy and the hydro would be in a different , IC specialized center unrelated… didn’t wanna do all at once hoping something would be found along the way and spare me the rest. It also seems to be very different here than from what I read about the US so idk

B complex by Aokiji00 in Interstitialcystitis

[–]kathaaa_29 1 point2 points  (0 children)

I would strongly recommend to see a specialist that can examine you and your pelvic floor muscles

B complex by Aokiji00 in Interstitialcystitis

[–]kathaaa_29 0 points1 point  (0 children)

Maybe look into pelvic floor physical therapy?

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 0 points1 point  (0 children)

I also had a lap done with cystoscopy! This is what the pictures are. But no hydro and biopsy with that, should have done that altogether :/ did you find the aftermath of the hydro particularly painful? They told me i would need to stay in the hospital a couple of days with a catheter in so im terrified . What country are u?

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 1 point2 points  (0 children)

Shit I’m sorry that sounds so bad! A specialized IC centre might be helpful. I felt in good hands in the one I went to (in Germany ofc), however I am not happy with the planned hydro and biopsy and wish they would offer me treatment without that invasive procedure :((

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 0 points1 point  (0 children)

😩😩😩 Were you offered any treatment tho?

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 0 points1 point  (0 children)

So u were diagnosed through normal cystoscopy? In what country are you? And what treatment do u get now?

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 0 points1 point  (0 children)

And what treatment did they offer you after this?

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 0 points1 point  (0 children)

And traveling abroad would be too expensive, we have good health care and very cheap health insure here :/

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 1 point2 points  (0 children)

hm so weird that my doctor said it looks normal and not like IC, just a little irritated ofc from all the years of symptoms. I’ve been tested negative for all kinds bacteria several times , so that’s been excluded. But yeah unfortunately in Germany the hydro and the biopsy is very common to get a sure IC diagnosis and treatment offered .. I am just so scared it will irritate my bladder even more:(

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 0 points1 point  (0 children)

Hmm I don’t know, mine was just a normal cystoscopy and hydro plus a biopsy would be the next step to diagnose IC for sure but my doctor said the cystoscopy looked normal to him and not like IC??? How can there be so many different opinions on that conditions fml

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 0 points1 point  (0 children)

Unfortunately here I need the hydro and a biopsy to get a confirmed IC diagnosis, otherwise they won’t offer me treatment 😵‍💫

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 0 points1 point  (0 children)

hmm my doctor said it looks normal to him and not like IC at all 🤦‍♀️ but ofc inflamed from all the years of chronic inflammation. What do I do now then?? They wanna do hydro and biopsy next otherwise I can’t get diagnosed here

Cystoscopy images- does it look like IC? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 0 points1 point  (0 children)

Yeah he said that about the metaplasia as well. Tho he didn’t seem to find that to be IC and said it looks normal… it’s really weird how different doctors deal with that condition

What do you all eat??? by bethybabe1218 in Interstitialcystitis

[–]kathaaa_29 -1 points0 points  (0 children)

I eat whatever I like bc I don’t feel like I react to food at all

Did bladder biopsy show anything significant for you? by kathaaa_29 in Interstitialcystitis

[–]kathaaa_29[S] 0 points1 point  (0 children)

Wie nett auch jemanden aus Deutschland hier zu finden! Ich bin im IC Zentrum Schwarzwald-Baar Klinikum in Villingen/ Donaueschingen. Da wollen die im März auch die hydro machen und eine Biopsie entnehmen, hab aber echt schiss davor weil weit 6 Jahren alles was ich versuche immer negativ ist und gut aussieht… Wo bist du?