Apologies in advance for the long post… My common side effects of letrozole (joint pain, hot flushes, fatigue etc) have settled down after 2 years, with help from lots of exercise and turmeric (hooray!). However, vaginal atrophy kicked in 8 or so months ago, and despite being prescribed Replens vaginal moisturiser from my GP (with consent from my oncologist) I’m still suffering hugely with this. Sorry to be explicit, but my sex life is non existent as it’s just far too painful, and I now have a UTI which has become unbearable over the last few days … I’ve been prescribed antibiotics for 3 days, but my gut is telling me this is going to become an ongoing issue. At my yearly oncologist appointment in April, my lovely oncologist did suggest I switch to tamoxifen so that I can try oestrogen pessaries. I’m reluctant to do this -
Because my tumours were ER8/8
I’m post menopausal
I can’t bear the thought of starting a new drug and new side effects… better the devil you know and all that.
She understood and agreed.
I’ve come to terms with the whole cancer thing (as much as anyone can)and feel happy generally, but as a 52 year old woman with no nipple after Diep reconstruction on one side, and no nipple sensation after symmetrising reduction on the other, the fact I’m now dry as a bone and have UTI’s in my future too, I’m just so fed up that I face the prospect of continual discomfort, and no proper intimacy with my husband for at least another 3 years - if not forever!!
Does anyone relate or have any advice?? It all feels so unfair! xxx
I could have written the same. I’ve been at the GP twice in the last 2 weeks with UTI and general miserable atrophy symptoms. Mine has been going on much longer and I am pretty fed up. I have been super scared vaginal of oestrogen, I know research now supports it’s use, but I was still reluctant. I was in a tearful heap at my lovely GPs on Monday and she encouraged me to try it and prescribed for me. I have read round and round since, sort of reassured myself and have now started it. I got to the point if being so miserable, I had to try. I’m hoping to get on top of things, then use less frequently than prescribed. We shall see, but I feel ok about it now and feel more comfortable already. I hope that helps a little.
I would recommend D- Mannose for UTI . When I get one I rarely bother with antibiotics as i find they stop working when the course is ended but if I persevere with lemon barley and D- Mannose it goes. It can be taken alongside antibiotics as well. I can remember trying Replens and I didn’t like it . Hyalofemne is good and I ordered it off their website and they sent me a free sample and I also like the Bio- Active pessaries for menopause though my symptoms are very mild compared to yours . You obviously have an Oncologist who isn’t prepared to let you have topical oestrogen whilst on Letrozole but maybe if you can collect other opinions you might be able to persuade them to let you try if you’re willing for I stance maybe a menopause clinic. I understand your trepidation in regard to changing to a different drug ( better the devil you know ) . I’ve heard that Tamoxifen is kinder to the joints however I’ve been told that you shouldn’t take turmeric if you’re on it . Hope you get some improvement soon. Xx
Hi I had dryness and many infections.
I now have a very low does estriol 1mg twice a week .
I take hiprex again very good for UTI
Also have Trimethoprim for after sex .
Haven’t had a uti in a long time .
Good luck get yours sorted .
I’m 64 had cancer 25 yrs ago ,chemo and radiotherapy,cancer was estrogen sensitive.
Hi @diddy1. I do sympathise!! I went through the menopause aged 46 and developed vaginal dryness about 8-10 years later. Like you sex was impossible. After a few false starts i started vaginal oestrogen which worked well when combined with a lubricant for sex. I’m now 64 and was diagnosed with Er/Pr positive BC last year. Now I’ve finished active treatment and am on Letrazole. I stopped the oestrogen immediately on diagnosis and within 2 weeks felt like I was sitting on pins After research, and talking to a gynaecologist I restarted the oestrogen. For me being unable to even sit comfortably while facing the chemo etc just wasn’t worth it when the absorption of oestrogen from vaginal creams is so negligible as to be practically nil. I just have it once a week, pre BC it was twice, and while i have some minor symptoms it is manageable. Sex is possible, with copious amounts of lubricant, so I’ve accepted that this is the new norm!
Like you Lyndy61 I used to have regular UTIs after sex and regular courses of antibiotics. Then one day one GP suggested I take one dose of antibiotic immediately after sex. It worked! Fingers crossed it continues, especially now I have no oestrogen as a result of Letrozole.
Dear @diddy1 , just wanted to add that Replens is a bad option as it contains glycerin but Hyalofemme and Yes! Are safer and both of these are available on prescription. There is also a private group on the BCN forum for discussing sexual intimacy which you may like to join. Don’t give up until you get what you need!
I’m so sorry that you’ve been suffering for so long too @edp - I’ve also been in tears talking to my GP and oncologist… it’s just awful isn’t it.
I really appreciate everyone’s responses and realise it’s clearly an issue for so many of us.
As you say @JoanneN my oncologist will not prescribe topical oestrogen with letrozole but I’ll look into D - Mannose (not sure what that is!) and perhaps and for my prescription to be changed to Hyalofemne.
Thanks everyone- so good to be able talk openly about this. xx
Copious amounts of lubricant… yep - even that’s not working for me at the moment!
Did your oncologist agree to topical oestrogen with letrozole then? x
Thank you I’ll try the different moisturisers and I’ll join the private chat too. You’re so right, I shouldn’t give up - quality of life is so important. xx
Were you prescribed the estriol by your GP? Are you also on an AI? Please excuse my ignorance but what are hiprex and Trimethoprim? Sounds like I need to get my hands on some as it’s working well for you thank goodness! I’m glad you’ve got yourself sorted xx
This is such a huge issue for women on aromatose inhibitors. I too have vaginal atrophy. I’m 62 and I haven’t had penetrative sex for 8 years, a year after diagnosis. It is too painful. I’ve tried everything under the sun, but nothing works for me. There are women who can use the creams/pessaries, but I think there are a lot of us who can’t.
It’s a bummer! However, I’m still alive and kicking! Si just grateful for that.
People who haven’t gone through this have no idea do they! Considering it’s such a huge issue, I’m surprised more research hasn’t been done to help alleviate this awful side effect of AI’s.
I’m so sorry that nothing works for you and I really hope that one day thing might improve naturally for you when you finish hormone treatment. Unless you already have of course…
Obviously grateful to be alive too xx
@diddy1 I wouldn’t say he agreed but i said to him that I was going to restart it, as life was so miserable without it, and he could see that there was no point in saying no!
It was on my repeat prescription list from the GP, who is obviously aware of the AI’s I’m on, and he has continued to prescribe it.
Hiprex and Trimethoprim are both antibiotics for the treatment of uti’s but I believe that Hiprex can be used a prophylactic to prevent uti’s
They contacted breast cancer specialist, and also spoke to urologist.
Both said 1% twice a week would be safe ,on esridol.
They gave me hiprex apparently they give it out in America.
It’s given for urinary tract infections.
D- Mannose works for ecoli UTIs which are what the vast majority of them are caused by. It’s so ething that we all have in our bodies naturally but some of us have lower levels of it than others . It stops the bacteria in the urine from binding to the bladder wall by tricking them into binding with it instead - then you wee them out . It does have any interactions or side effects xx
I’ve now swapped to Exemestane. A new study from American association of Gynaecologists has said Vaginal estrogen use in breast cancer survivors: a systematic review and meta-analysis of recurrence and mortality risks
You are entitled to access to a menopause specialist, I paid privately and then moved onto NHS as the wait was 9 months. I’m on Imvaggis and Blissell with Yes organic moisturiser all on NHS. I pay for Sutil lubricant.
The risk of vaginal oestrogen with aromatase inhibitors is a discussion with your medical team and you.
After research, and talking to a gynaecologist I restarted the oestrogen. For me being unable to even sit comfortably while facing the chemo etc just wasn’t worth it when the absorption of oestrogen from vaginal creams is so negligible as to be practically nil. I just have it once a week, pre BC it was twice, and while i have some minor symptoms it is manageable. Sex is possible, with copious amounts of lubricant, so I’ve accepted that this is the new norm!
xx