Hi everyone,
My mom was diagnosed with stage 2 invasive ductal breast CA late 2023 (initially treated as Triple negative, though her HER was 2%). In 2024, she had a double mastectomy, chemo, radiation and then immunotherapy. Since Dec. of 2024, she has had ++ issues with her bladder. This includes pressure, incontinence and frequency. For example, she goes to the washroom 50 + times in a 24 hour period. Due to this, she has been unable to sleep. This is greatly affecting her quality of life and she is exhausted.
She requested an ultrasound on her bladder but the doctors were reluctant to give her one. Finally, she got one done and the report shows that her bladder does not expand or contract and is not “normal.” No diagnosis was given. As well, she requested a pelvic. No one had given her one in all this time (since December 2024). The urgent care doctor diagnosed her with atrophic vaginitis. The treatment (creams) have not been effective. I feel so bad for her because she is suffering and in pain so much. She tried a catheter today but it was so excruciatingly painful that it was removed. She continues to go to the bathroom very frequently, about every 5 – 10 minutes and she finds it very uncomfortable to sit down. Therefore, she generally paces or stands. Needless to say, she is exhausted. Any ideas/ thoughts would be helpful. Thank you in advance.
Hi, sorry to hear about all your mums problems. Vaginal atrophy can be caused by the menopause and is a very common thing. It unfortunately sounds like your mum has had it so long without help that it is extremely bad!
Just wanted to sign post you to some things. There is a group on Facebook called Menopause and Cancer Chat Hub that is useful. It is ran by Dani Binnington. She is a reputable and reliable source who has also written a book now and has a regular podcast with all sorts of topics. I’m sure it’ll be covered there.
Dr Alison MacBeth (based in Glasgow) has been on one of the breast cancer now speakers live events and is brilliant. She has been involved with Dani too and is basically saying that for these types of things even with a b breast cancer history you can get vaginal estrogen of certain types. Dr Eleanora Teplinski is on instagram and covers this very well as well. Research has moved on so much so please tell your mum not to suffer in silence and to try and see about these topical type treatments. From memory, Dr MacBeth has said that blissful and imvaggis are safe. I’m still getting cancer treatment and am on tamoxifen and due to issues starting I’ve been prescribed Blissel through my GP and in agreement with my oncologist (who kindly wrote them a letter giving them permission).
My mum when she hit menopause was badly affected and I remember she was constantly feeling like she was going to pee herself/was running to the loo. It was a total shame and I remember it well! She also got put on something similar to imvaggis and is pretty much normal now (no cancer history).
You can have a look at the professionals I’ve spoken about and they’re on Facebook/instagram if you’re ok social media and they have referenced the most recent research. Here is a screenshot of what Dr Macbeth recently posted. I hope this helps.
Hello there
I’m so sorry that your Mum is going through - absolutely miserable for her and very worrying for you. It sounds as though you are in the US and things are done slightly differently everywhere so as to what would be your next move if things don’t improve it’s hard for me to say.
Firstly - think about what’s in the creams and how long she has been on them . Some Oncologists are willing to prescribe vaginal products containing oestrogen to women who have had breast cancer others are not or want you to try other things first which would usually contain something like hyaluronic acid as famously advertised in many brands of moisturiser which plump up the tissues. Any kind of topical treatment oestrogen based or not can take time to work and needs to be used every day to take effect . Products containing oestrogen would plump up the tissues and should infiltrate into the structures surrounding the bladder and help with the urinary symptoms. It’s worth finding out if you don’t know already what is in these creams - if there is any oestrogen in them and if so how much as there are different strengths.
You said she tried a catheter - but didn’t say who ordered for her . It sounds as though she can’t be emptying her bladder fully . There are plenty of people who intermittently self - catheterise but it’s something that needs to be taught by a medical professional with relevant experience and would take time to get used to. It would be very uncomfortable initially . If the plan was to leave it in then from my experience as a Nurse I know that it’s hard to adjust to as the catheter stimulates the nerve endings that are the same ones that tell you that your bladder is full and so cause even more of a sensation of urgency to wee at least initially. Forgive me if you’ve looked into this already - I imagine you must have at some point but I’m wondering if she could have a urine infection or interstitial cystitis .
If she gets on the best appropriate treatment for atrophic vaginitis and doesn’t improve and UTI and prolapse are excluded then you need to go back to the Drs. about your Mum’s bladder . I don’t know what regime your Mum has been on but just wondering there’s a possibility that it or another medical condition might have affected the nerve supply to her bladder .
I agree with this , my oncologist agreed to me having a mild oestrogen vaginal cream so worth asking x
Hi @sunny5
What your Mum is going through sounds horrendous and must be soul destroying for you all.
Here’s a few things that I have used along my vaginal atrophy and prolapse path that may help you:
Hypopressives - look up MoonRise Filippa on YouTube
https://youtube.com/@moonrisefilippa?si=QxCLyDZy_CNdaPFM
This link will get you to the right place.
Basically it’s breathing exercises with certain positions that help the pelvic area become less crushed and have less symptoms. It works, give them a go.
Dilators - I wasn’t a fan and then my nurse sent me some for free in the post. 4 tubes that are of different sizes. Lots of lubricant, suggest YesYesYes as it’s natural stuff and doesn’t irritate. These help stretch the area and help it become more flexible.
Pelvic Floor Exercises. - so I was referred for physio to learn how to do these properly. My current problem is trying to relax them and it’s a lot harder than I thought. When I started I couldn’t do them now I have the lift but not the drop. I personally unless your Mam is going to do these with a physio to avoid and do the Hypopressives instead.
Estriol cream- so I’ve used vagifem pessaries, Blissel Gel, Senshio (Ospemifene) tablets. None of them work as good as the estriol cream. I’m back to normal juiciness shall we say.
Issviva x Joylux Vaginal Rejuvenation Device - this is a recent investment to help get me off the Senshio tablets as they cause hotflushes. This is red light therapy, gentle vibration and heat. It works a treat. Obviously it needs to fit that’s where the dilators come in handy too.
Out of everything I think the Hypopressives will be the best for the bladder problems. The program will provide training and will open you up to other people and stacks of information.
Hope this helps and some relief is found soon
Xxx