I am 56 and had breast cancer 5 years ago. I took Letrozole for 2 years and have been taking tamoxifen for the last 3 years. I have now been told to continue tamoxifen for another 5 years. My symptoms are achiness and tiredness but they are manageable and I am used to feeling like this now. But they are not the problem.
For a couple of years now I have had bladder issues and atrophy. I use Ovestin (estriol) twice a week for the atrophy and doctors have diagnosed me with overactive bladder and now I take solifenacin and Mirabegron daily for it. My doctors have told me this bladder issue is unrelated to the tamoxifen and is not a known side effect. Trouble is the tablets have not eased the discomfort I feel in bladder/vagina which is soreness and constant feeling like I want to wee. I’m wondering if Doctors may be wrong and that if I come off tamoxifen my symptons will improve, and I am tempted to do this as I am getting very down about my bladder discomfort. But I am worried about coming off tamoxifen as goes against doctors advice.
I just wondered if anyone had encountered similar and had any advice.
Thanks
I had / have suspected painful bladder syndrome and I take d-mannose. It is good for UTIs, but also I have found it has calmed my bladder down. Do you also do bladder training? Holding off going o the loo for longer and longer periods of time? That is very useful too.
I actually found that going into menopause has really helped me - I was pre-menopausal and now on zoladx and exemestane. For some reason, that has calmed everything down for me.
I also use regelle moisturiser twice a week - definitely helps calm everything down in that area nd has made a significant difference to atrophy - which was pretty bad after chemo.
Hiya,
thanks for your reply. I have never heard of d-mannose but have just googled it. Do you know which is a good brand and do you take as powder or capsules? I will definitely try this.
yes I have seen a physio and had bladder training and do pelvic floors every day now.
i use Ovestin (estriol) cream twice a week for the atrophy which works.
I’ve come to the conclusion that the solifenacin and Mirabegron although helping a little are not sorting this problem and perhaps I have been mis diagnosed as the original diagnoses was over the phone during covid as an over active bladder.
i will contact my doctor and discuss possibility of having bladder pain syndrome (interstitial cystitis).
Your reply has been very helpful thank you so much. I get so down sometimes as having bladder pain and such issues makes it hard to deal with every day life as I’m sure you can imagine yourself.
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