My first forum. Please can anyone help. Diagnosed with DCIS left breast with small invasion, estrogen positive. Sentil node clear in October 2016 had mastectomy, placed on Letrozole which I was unable to take due joint pain. I was put on Tamoxifen been on that a year in November. I am struggling with this also can anyone tell me if they have had a bladder problem being on Tamoxifen. I feel that i need to urinate all the time, bladder feels uncomfortable. I have had UTI check no infection. My GP is not sure what it could be. I feel really worried and depressed. Thank you. Nancy
What we have to bleeding put up with!! Good your GP checked out for infection but poor show that they could not think o anything else. Do you have GPs or nurses at your Practice who specialise, for example, in Women’s Health? If so, book an appointment with them.
I am no medic but all these hormone treatments such as Letrozole or Tamoxifen could cause or exacerbate any menopausal symptom as they block the production of or, in the case of tamoxifen, interfere with the circulation of oestrogen. Bladder issues are a common symptom of menopause and with a hormone treatment on top could possibly make the difference between comfort and discomfort.
The less oestrogen we have leads to vaginal tissues being less elastic, the Urethra (pee tube!) can thin, and the pelvic floor muscles can weaken. Resulting common issues can be stress incontinence, urge incontinence, irritable or overactive bladder, needing to pee more through the night, (nocturia). and painful urination due to increased risk of infection, cystitis.
So, perhaps go back to GP or nurse and discuss matters again. You could also try pelvic floor exercises to keep the muscles strong. Also, and especially as you are on Tamoxifen rather than an AI, vaginal oestrogen cream or a pessary like Vagifem may be appropriate and not necessarily for long term use. Obviously you or GP may not be too keen on the latter but. it may still be worth discussing such matters as well as discussing with Oncologist Services if you are still under them.
Keeping to a healthy weight and watching what you drink may also help, for example, caffeine, soda drinks, alcohol may irritate the bladder more.
Was on Tamoxifen for 5.5 years. Started having bad incontinence issues a little after 2 years. Prior to that I was wearing panty liners. Went on a 3 day road trip wearing Depends for the first time, also lined the Depends with paper towel (Bounty). Stayed near a bathroom and watched what I drank. This trip was the fist time I laughed so hard and wet my pants. Only got worse over the years. Thank God I’m retired! Got to the point where all I do is feel like I have to go, stand up and gravity takes over. No control. Tried to tie Tamoxifen to incontinence. Could not find anything online. About 5-6 months ago my stomach was hurting and I felt badly. Kind of like the flue. One day I decided to stop taking all medication. Don’t advise anyone to do this. 3 days later took Tamoxifen for 2 days. Got sick again. Stopped taking it and gradually went back on all prescription medication. About 10 days ago I went 3 days in a row with only 1 small accident. Of course then flooded again. Today was the first time in 2 weeks that the bed pad got wet. No accidents so far since then. About 12 hours. The past week my Depends usage has cut in half. Did some research again and found Tamoxifen can cause incontinence. Hope I keep improving. One article said side effects from Tamoxifen can take anywhere from 3 months to as long as you have been on it. (Gulp, 5.5 years!) I pray it is the Tamoxifen causing it. There is a medication but I have an intolerance to it. Plus, could not afford to stay on it.
Hope you are feeling well. Think you may have posted in September of 2018.
Looking to see how the next few months go. Between Covid and incontinence am looking forward to enjoying a movie and dinner one day.
I’m sorry to hear about your bladder troubles and frequent infections.
I am not having bladder pain or infections but I am having leakage after only almost 4 months on Tamoxifen. The lack of Estrogen and progesterone now is causing all types of issues. I’m starting to leak but hopeful that pelvic floor therapy will help. I feel that I do have some issues with prolapse, as intercourse is not comfortable. i am waiting to get into my gynecologist to discuss these issues further. They did start me on a miniscule amount of vaginal estrogen cream which has done absolutely nothing for vaginal dryness. Trying to be patient as the medical oncologist said it will take months to see improvement. I really miss my hormones and feeling very discouraged.
I’m really dehydrated too which is definitely not helping with the vaginal dryness. People talk about how the cream is so messy. Not for me…no cream ever leaks out. I guess it’s absorbed pretty fast. Just wish it worked.