Constant bladder irritation

[GaryTheCat]

I’m 50, still having periods, and been taking tamoxifen for a year (preventative due to family history of breast cancer).

Within a week of taking tamoxifen, I noticed my bladder control was much weaker.

A year down the line I have constant cystitis type symptoms and seem to need daily sachets to calm the stinging/throbbing/urgency.

Recently I had a course of antibiotics which calmed it down eventually but it was only temporary relief.

Has anyone had this as part of the menopause? Should I see my GP? What else can be done?

You should be able to use topical vaginal estrogen which may help.

Doesn't Tamox block estrogen?

ps- see the specialist who prescribed tamox. I think I read that as it blocks estrogen, using vaginal estrogen doesn't work - but there are other things like DHEA.

See a specialist who knows about all of this.

I had similar issues and was told I had an over-active bladder which was 'an age thing'... I was prescribed Vagifem, (which my GP refused to continue after I had breast cancer last year, despite the oncologist saying it was perfectly safe) told to manage my fluid intake, and do pelvic floor exercises. None of that was particularly helpful, and I put up with the symptoms you describe OP - stinging, throbbing and urgency. I had a bit of an epiphany a few months ago; I know irritable bowel exists and idly wondered if irritable bladder was a thing. Turns out it is, and caffeine is a major bladder irritant. I switched to decaffeinated tea and it has made a difference. Maybe worth a try?

Ooh wow, thanks that’s really helpful.

Yes, @JinglingSpringbells tamoxifen is an oestrogen blocker.

thanks for those tips that’s given me loads to go on!

@GaryTheCat You must be getting specialised treatment to have what you are- yes? Do you have the BRAC gene?

Isn't there a plan in place for all of this treatment?

For example, you will also be at risk of bone loss with Tamoxifen (I understand women on it are monitored and may be given other drugs to counteract it), and it also has other risks.

Who is managing your care and treatment?

The symptoms you have are really common as they are caused by loss of estrogen. There is a Podcast with Prof Nick Panay talking about this (think it's to Liz Earle on her Wellbeing website) where he says vaginal estrogen doesn' t work in women using Tamox, but there are other treatments.

Your consultant should know about this.

They also need to talk to you about the pros and cons of your treatment.

Yeah no monitoring of bone density or how I’m getting on, more prescription/leaflet/see ya!

I have my annual mammogram in three weeks at the breast clinic. Might call and see if they’ll see me.

Also no BRACA gene, not been tested anyway… my sister was treated 2yrs ago and tested neg.

What's the reasoning behind treating you now then?

I assumed it was because of the BRACa gene or several 1st degree relatives with BC.

Yes had my family history gone through. Number of 1st degree relatives. Maternal aunt currently being tested.

I thought they only counted a mum and sisters as 1st degree and then only if they had BC very young (ie before 50)?
That's what my consultant says.

It's interesting, as one expert Prof Michael Baum, says (it's on a BMS video) that unless there is the BRACA gene, HRT is fine (slightly off topic for you but you have been put on an estrogen blocker.)