Hello! My name is Charlotte and I’m 35 years old, there doesn’t seem to be a lot of information online about this particular condition and it looks like it’s a pre-malignant condition to a very scary type of bladder cancer (also very rare at my age!). My urologist didn’t really talk it all through with me properly but just said I would be being ‘monitored’ in three months time for potential pre-malignancy, a biopsy has not yet been taken but he seems pretty sure he’s found this keratinizing squamous metaplasia in my trigone. This is the only forum I’ve found with people talking about this condition! It’s only when I’ve come online that I’ve found that it has the potential to turn in to only a particular type of bladder cancer-squamous cell carcinoma and it’s a hard one to treat. So I’m very scared!
Because of my age and being a woman I’ve had an impossible time trying to get answers. I presented years ago at the doctors and I think a lot of my bladder issues I’ve confused myself with other pelvic related issues I had going on. A strange thing to say but it can be hard to tell where the blood is coming from as a woman! I put a lot of this I think down to periods (I also have endometriosis). I’ve always suffered with cystitis but a few months ago I had what I thought was a kidney infection and that made me start to take a much closer look at my urine where I realised I’ve been shedding my bladder and white cells alongside it and despite not being in pain particularly, that’s continued after the course of antibiotics finished. My GP unfortunately has thought I was some crazed lunatic when I kept telling her what was happening and she still does. I had to pay private in the end to have a cystoscopy but I’ve come out with very little information regarding what I do with this and how serious it is.
Does anyone know what I should be asking for going forward? Should I get a flexible cystoscopy with a biopsy next and then a rigid cystoscopy with a TURBT? Are there any hospitals that I should ask to be referred to for investigation/treatment? Lastly is it a good idea to just have the bladder out and opt for a replacement like a bag etc and not take the risk?
Sorry in advance if I’m not allowed to post here but apparently this is an exceptionally rare condition and I can’t find a lot of support for it!
Charlotteviolet . Hi Charlotte and a warm welcome to this friendly and supportive group. It sounds as though you have a lot going on and no real answers to your concerns. We are not medics here so can't offer medical advice but it sounds as though you need further investigation to come to a diagnosis. Hopefully others here with similar experience will be along to offer some advice. Best wishes,
- I am sorry to hear of what you are going through, and understand fully how absolutely impossible it seems to find qualified information,professional insights and other patient stories to understand better this very rare condiion.
After multiple UTI`s - most mulit-resistent to antibiotics ) with no response to any of the antbiotics prescribed ( 14 in 10 months ), micro and macro hematuria, chronic deep flank and lower back pain, lazer removal of kidney stones - with some left behind as they were completely covered by bladder lining impossible to cut through and the findings of what the uro surgeon described as "strange looking areas" across the bladder, the ostium, both sides if the bladder wall and in the lower calyx of one kidney - she took what she described as a superficial curiosity biopsy...." so we can understand what the strange looking areas were", she said.
This was 5th of January this year.The biopsy material was so superficial and offered a minute size, not enough for the pathologist to conclude. She took some pictures during the cystoscopy that both I and others reacted instantly to, and it took less than 2 minutes on AI to understand that this had to be investigated further. I therefore went to a private urologisk, who instantly agreed that further exams had to be done, and a TUR-B was set up at the same public hospital who originally observed and documented the findings.
The hospital admitted after many if`s and but`s that they had never seen this before and had no experience or knowledge of how to progress and secure a process. However, they told me that they would be supported in their proceedings by the largest University hopital and their competence and uro professionals, to be able to do a qualified TUR-B . TUR-B was done mid-March and the histology post-TUR-B was " chronic infection and extended Keratinizing Squamous Metaplasia.
The surgeon told me that he had removed all visible areas with a good margin, but on inspection of the histology report, I saw that he had performed the TUR-B only using White Light, had only removed visible flakes in moderate amounts from the bladder fundus ( bladder top ) and had not included detrusor muscle in the sample material or removed /taken biopsies from other eares with known lining changes.
In other words; the histology is inconclusive after the TUR-B, other than what the histology showed. They then wanted to observe me by setting me up for annual cystescopy 10 months after - something I refused to accept, as the result was inconclusive, and it was very clear that the hospital / urologists did not know what to do from here.
I therefore went back to the private clinic and asked for advice, and the urologisk was pretty shocked to see my documented expereiences, and therefore applied for my case to be transferred to a Uni hopsital with a specialized urological department.
The hospital accepted the transfer 2 days after, and 7 days after that I had a meeting with the urologist there. It was clear that this was indeed a more specialized and experienced department, however because of the rarity of the condition, I was pleased to have had my "homework" done, and knew exactely what the updated guidelines for this condition / diagnoses says according to the EAU ( do a Google search - the guidelines were updated in April 2026 ).
The urologist at the new hospital decided there and then, based on clinical results, history and status + TUR-B histology and lack of follow-up since then, to set me up for a reTUR-B, to take place on Monday next week. I look forward to it, as much as I dread it; TUR-B next Monday will be done with Hexyx light ( "blue light", they will do a mapping of the bladder, remove lining changes observed earlier and also take biopises of the lower calyx and changes observed there back in January this year.
I have had some deep analysis and discussions by and with urologists not connected to my case specifically, and they are concerned about certain details in CT`s taken, the visuals of the cystocopy pictures, documented clinical details and medical history, so I am prepared that likely when next TUR-B is completed, I might be told that there are multiple processes in the bladder simultaniously; likely CIS in addition to the allready known extended Keratinizing Squamous Metaplasia, hopefully not also early SCC - but I am now at the stage that I`d rather know for sure, rather than being completely in the blind.
So......to your point..... As you, I am aslo frustrated about the lack of information available covering this diagnosis and progress of this. In theory, I feel like I am sitting "put" waiting for the metaplasia to become CIS or carcinoma - not a desireable situation - especially when it is as high a risk as it is - and there is really nothing else to do, than to wait it out, and hope it doesn`t happen. I am completely new in this forum, and if you want to, please feel free to contact me in my profile - happy to help and share, if I can. 
