Hello Everyone 
Just wondering if it’s a common side affect with AI’s?
I’ve been on Letrazole for the past 3 yrs ..pre and post op.
Recently I’ve had to start using pads to mop up my sudden leaks.
I seem to have lost control of my bladder… 
Previously pre Letrazole I would get the urge ..with time to make it to the loo, now I leak before I get there.
Sometimes I feel I need a wee, but when I try go it’s very little?.. other times Ive no control before I get to the loo…reason why I’m now using pads.
Can anyone relate to this?
Guess I should see my Gp but really trying to avoid since my diagnosis.
I’ve never had an issue seeing my Gp before my cancer diagnosis but now I think he’ll send me for scans … which will take me down the dark tunnel again…
Not sure I could cope with hospital appointments again and waiting on results as life is semi normal again.
Jackie x
Hi JMG
I feel for you. I’d only been on AI for short time and for a couple of weeks I had a similar experience with leakage. I thought….surely not, as well as everything else! Thankfully it passed, perhaps I was adjusting to the tablets 
.
Obviously I fired up Google and read that menopause, in general can affect the pelvic floor and urinary tract. Estrogen or lack of, weakens the muscles and also makes some of us more prone to water infections. I suspect these tablets accelerate the process given their purpose. Whether it is temporary or permanent I have no idea.
First port of call should be the Dr, see if they can help.
The on-line suggestions were to practice pelvic floor exercises to strengthen the muscles. Many people don’t know the correct way to do this, and one site (appeared reputable) suggested sitting on the toilet and practice stopping and staring flow while peeing. I tried this, it was more difficult than I thought, but after a few attempts did manage to get it. Worth a try.
I’ve had lots of problems with leaks since long term use of Letrozole and Abemaciclib - I have stage 4 - secondary breast cancer and I found this one of the most depressing issues about treatment. I went to my GP and asked to be referred for Pelvic Physio - to help with incontinence issues. The person I saw was great and recommended the NHS squeezy app which does remind you to do your exercises but I would recommend seeing the physio first to ensure you are doing the exercises correctly and they will also measure the strength of your pelvic floor to start with so you can see improvements. At the moment I am seeing someone every couple of weeks ( in the Maternity Dept!)but it’s worth it for the support and tips to stop as many accidents. It’s early days but things are improving. The exercises do need to be done just about every day for life - it’s use it or lose it but it really does help. The staff at Ipswich Hospital have been great, sympathetic, kind and reassuring. Do seek help- good luck
The advice you’ve been given is great and I think you should follow up on it - even though it will mean scans etc . but I’m also wondering if you could have a low grade UTI . The way you describe not being able to tell if your bladder is full or not that sounds like a bit of cystitis and an infection can also aggravate urgency to the point where you just can’t make it in time . You could try taking D- Mannose ( which doesn’t interact with anything ) and drinkiing some lemon barley . I had a bit of cystitis last week - weather was so cold I forgot to drink and I’m on top of it now with those measures .xx
Thanks everyone for your advice, all taken on board and very much appreciated.
X
Hello @jmg
In the last eight months or so I have had the absolute worst urgency for a wee, quite often I’ve not necessarily made it in time. I then got into the habit of having a pee anytime there was a toilet around and that made me still want to go urgently but hardly any would come out because obviously there wasn’t much there. I do wonder if subconsciously I wasn’t drinking enough fluid because my skin has been quite dry - not quite true - my wrinkles were more prominent! In the summer I can chug away like goodness knows what but in recent times it really has dropped off.
I spoke to one of my BCN team last week as I chasing up my annual mammogram appointment - I took the opportunity to ask the question was this urgency etc. caused by being on Anastrazole. I have been on an Anastrazole nearly four and a half years. She advised me to speak to my GP because as this is only a recent occurrence it is extremely unlikely (more chance of winning the lottery) to be caused by the Anastrazole. If it was the tablets causing it, it would have happened not long after starting to take them.
Interestingly, with it being January, in the last 2 weeks I have put myself back on a healthy eating and trying to lose a couple of kilo regime. I am drinking at least two litres of fluid a day and that has actually dialled the urgency down… and the wrinkles!
So it might be worth upping your fluids because you might be cutting back unconsciously like I was, and if that doesn’t work after a couple of weeks, I’d have a words with your GP.
Like @jmg I’ve been taking Letrozole for 3 years, & have had similar issues with incontinence & even full-on flooding, which the trusty Tena wasn’t a match for! But a few things have helped, & I’d agree with all the advice about pelvic floor exercises, which are part of my daily routine now.
After ruling out an UTI, my GP suggested I might have an Over Active Bladder (OAB) which is when the bladder wall becomes sensitive to things in your diet. If you look it up online, there are lists of likely contenders to avoid, & stopping orange juice & limiting caffeine really helped me. Interestingly, when you’re dehydrated, the concentrated urine in your bladder can also trigger OAB, so keeping well hydrated is good.
There are suggestions online about exercises you can practice to recover some control, so although it won’t be a quick fix, don’t despair!
I’ve been on Letrozole for 2 years and have trouble with leaks, depressing isn’t it. I have a few side effects because of this medication but would be too scared to stop it. Sending hugs to you.
I’ve had similar issues but been prescribed vaginal estrogen and just realised this morning that it’s massively improved.
Sure is Cally..hugs back 
Was just about to say this. Vaginal oestrogen should sort this and it’s perfectly safe as it’s localised. Please ask for this, those of you who are suffering
Hi tenna lady.
I.would definitely consider AI the culprit.. i started on cranberry capsules to help also you can take a ural sachet everyday to help. Just natures own otc. The i started on veroza (need script) which was for night sweats and hot flushes and it cleared everything up. In fact i no longer had night time peeing and even sex was better.. but after 5mths my liver packed it in and i had to stop the veroza…i cried… but most of the bladder improvements stayed good. I niw take cranberry caps in the am and can take ural if i want but havent needed to. I was one of the 100,000 who react badly to veroza but you might be fine.. give it a go.
Btw i have stage 4 BC so i cant stop taking A I.. not an option.
I started having leaks and then incontinence about 18 months after I started taking Letrozole. The BC nurse didn’t think it could be a side effect of Letrozole because I’d been on it a while, but suggested I do a trial - stop it for a month and see if any improvement, then start it again and check; the BC nurse did say that after this, I could try another type. I did the trial and am convinced Letrozole is the issue, but I’m so fed up with everything, I have stopped Letrozole and not gone onto anything else - I haven’t told anyone this. It’s an individual choice - to make with or without others, taking into account your own circumstances. I don’t know if this will help you - but all the best.
I’m also getting leaks and having to wear a pad most days, or at least if I go out. I’m 43 and always had a bit of a weak bladder or maybe it’s an over active one… but it’s got hugely worse since being on Letrozole (6months) I’m really trying to do my pelvic exercises and stop flow when weeing to see if that helps. Will speak to my oncologist when i’m next in. I guess try clenching and holding flow and see if that helps and speak to doctor xx
Hi. I had a similar problem after I started taking Anastrozole & was just readying myself for a visit to the doctors. However, I then listened to a doctor, with breast cancer, on one of the Breast Cancer Now zoom talks & she said it was sometimes caused by vaginally dryness. I didn’t think I had that issue but started using a vaginally moisturiser & the problem disappeared. I continue to use the Yes water-based moisturiser every 3 days & almost a year later the problem hasn’t recurred. It’s worth a try, especially if you’re worried about vaginally oestrogen. Good luck xx
Yes. I’ve got less bladder control. I’ve been off them for 3 months after 5 years. So.e things are returning but I wear panty liners but sometimes they are not enough. I get desperate. Some days are worse than others.
Hi everyone,
Oh yes I have exactly the same problem. I have been on Letrozole for a year and also on Palbociclib and bladder is so weak. I can’t have surgery so definitely won’t be stopping the meds.
Can anyone recommend a decent small/slim pad - I really don’t want it to notice!!!
Thank you all 
I think it’s very common with the lack of oestrogen. Moisturise the area, I have Yes on prescription. I also started low dose vaginal oestrogen which has helped from a menopause clinic, as GP reluctant to help as I was on AI’s. More recent studies have shown that vaginal oestrogen can be prescribed with AI as long as patient knows the risks and benefits. But also self referred to a pelvic health physio on the NHS. Wait was about 4 weeks. I’m in Wales so unsure how long it may be elsewhere.
Pelvic physio did a physical exam, completed a 3 day liquids in and out chart, given exercises not just normal Kegel pelvic floor. So well worth a visit.
Menopause and cancer charity have lots of help, see pelvic health link below
HI @puglover56 I use Sainsbury’s 30 liners slim and discreet. X
Hi , same issues as you . Letrozole alters the urethral tissue which can result in incontinence issues and increased risk of UTI . I asked my oncologist for Oestrodol vaginal cream , which has solved the issues .