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,
