Hi all. Just wanted to put something out there that has took me a lot of tears and all day to organise. Due to Letrozole and possibly my abemaciclib I have been suffering from v/a from the time I started using them but have kept it under control with vaginal moisturiser up until last night. Before the whole breast cancer thing when I went through the menopause (I’m 69 yo) I was prescribed Ovestin hormonal cream which of course I haven’t been using for a year since I was diagnosed. My consultant did say to me quality of life is of course important and, knowing I had suffered with this before the diagnosis, if I needed to occasionally use it or a hormonal treatment she would understand. I should say that I have also averaged a UTI about every 2 months in the last year, apparently another smashing side effect. So last night I woke up at 4am needing to urinate, however was woken again at 6am and this time was urinating razor blades, I knew it was not a UTI because I know all the signs now and my water was clear. I got in touch with my GP at 8.30am this morning to say I needed help; a prescription was eventually sent to my pharmacy but neither my pharmacy or any in my area had a supply of what was needed. A very helpful local pharmacy did say to me they had pessaries if I would be happy with those - would I!!! - of course, anything to take away the pain. So I phoned the GP who then proceeded to make the prescription for the wrong pessaries and, to cut a long story short, it took me saying to the receptionist at the surgery that I would have to go to A&E if they couldn’t get this prescription sorted out - by now it was 6.10pm. They told me to ring around other pharmacies to find one that had got a supply of what was on the prescription and if I couldn’t find one then I would have to wait until tomorrow. The very helpful pharmacy then phoned me to tell me that they had phoned the GP to guide him/her through the process of ordering the correct pessaries as he/she couldn’t find them on the system him/herself. I am a retired NHS secretary and it made me quite ashamed of the direction the NHS is going with the exception of the cancer services who have been marvellous. It seems they would have been quite happy for me to suffer another sleepless night in pain. I actually properly cried over this, so sad.
What a miserable frustrating day 
I hope you get some relief tonight . There’s lots of discussions about this( using topical oestrogen ) on the forum and quite a few people seem to have it prescribed after discussion with their doctors - like you say risk versus quality of life . If you search topical oestrogen in the Ask the Nurse’s section of the forum there should be some helpful info . Hope you are more comfortable soon .
Hi @lollyscott you poor thing, I had VA when I started taking Letrozole and in order to be able to use the pessaries my oncologist insisted I switch to Tamoxifen. I did it for one month and switched back, Tamoxifen was not for me. So I only used Vagirux for one month. I now use Hyalofemme for the VA and always keep a packet of D-Mannose for UTIs. Both available at pharmacies and from Amazon. You may already know about them and, from what you described, they may not be strong enough for you but as they are available without prescription, it might be worth keeping a little supply of both for emergencies. For reference, I was 67 at the time (now 68) and feel both the urinary issues and the VA are under control. As @Jill1998 says, there are a number of threads on this subject if you search on Vaginal Atrophy or Vaginal Dryness. It is an absolutely vile side effect of endocrine treatment and I hope that it will soon be under control for you and that you never have a frustrating day like that again. It’s all very well doctors having the theoretical knowledge but unless they’ve experienced it, they will never understand how traumatising at a very personal level it is.
Thanks for your uplifting replies. I feel that there is not enough explanation of this condition when you start on endocrine treatment, probably the only failing of the breast care medical staff in the NHS. This has had a more detrimental effect on my life than any surgery I have had with this condition!
I think they’re probably concerned that if they highlight every side effect that more people would be afraid to take the meds . It’s hard to find the right balance between frightening people
/ overloading them with information and over- protecting them which can sometimes feel like information is being witheld and our priorities aren’t necessarily what they see as priorities.
The experience you described would have made all of us cry - how utterly frustrating . I work in the NHS as well and I don’t like the way things are going .Thank goodness for the helpful Pharmacist . I hope you’re getting some relief and that you’re having a better day today xx
They were very quick to highlight things like the sickness/diarrhea that I might experience on these drugs, also the fatigue I might feel and rightly so. I wasn’t looking forward to any of those side effects but strangely only fatigue got me, and I have IBS so I was expecting worse when in fact I’m slightly better. They also highlighted the fact that if I need dental work I would have to plan it in case I got necrosis which is much more frightening than v/a! I’m still emotionally exhausted today from the experience, the stress can’t be good for the condition as we know. What’s annoyed me is I am usually a very positive person and glass half full, I am making the best of the situation (in fact I have weeks when I feel pre-cancer!), and this really is not supportive which is what I have come to expect from the NHS as I tried to be in my various positions within the service including mental health.
I totally empathise with you. I’m 2 and a half years into Letrozole treatment and since January (after a knee replacement incidentally) I have had 2 UTIs that have been a real problem to treat. The second one 3 weeks ago I had antibiotics pivnecillin for a week and by day 5 felt bladder discomfort and frequency returning. A GP then prescribed one week Trimethoprim which didn’t improve anything by day 4. At this point one of the GPs asked me to send a sample in to the lab. As this came back negative I wasn’t contacted by the surgery and so I rang to speak to him again. He just said well you haven’t got an infection. He had no suggestions to make other than when I said I was having a review with one of the female GPs in 10 days time he said perhaps she could do an examination as well. I felt abandoned! After 10 days getting up 4 or 5 times a night and frequency and discomfort etc in the day I saw her for my review. Wow what a difference. She was extremely sympathetic and on examination said I had VA probably made worse by the Letrozole. She said this would also have contributed to increasing number of UTIs. She prescribed vaginal oestriol cream having reassured me the current research shows it does not raise oestrogen levels and is safe to use. She told me about the research, who had done it and that the dr who has done the research was a breast cancer patient herself. I’m 5 days into treatment and things have certainly improved. I’m hoping things stay improved!
Thank goodness you managed to get a sympathetic GP who had looked into this condition. I never have problems when speaking with the breast cancer team, only with the GP’S. The need some further education in this department so that they can show some compassion when we go to them in pain! I’m now thinking of putting a complaint in about what happened to me yesterday; I just want them to be more aware of this situation as there are more and more people who will go through this in the future.
I have suffered VA and bladder issues since menopause. I was on HRT and used a estrogen cream until my breast cancer diagnosis. I am 70 so was prescribed Letrozole but was allergic to it so was switched to Tamoxifen. I was originally told I could not have vaginal estrogen cream and so used Hylofemme. It helped but I was not as comfortable as on the estrogen cream Eventually the BCN wrote to the GP to say that as I was on Tamoxifen it was OK to prescribe the estrogen cream which has helped a lot.
The one thing I did notice was that the Hylofemme cream, although it helped with VA, it caused irritation to the urethra and bladder. Might be something to think about.
Hi @lollyscott
I’m just back from the dentist for my pre-assessment in advance of my first bisphosphonate infusion, and I too was very alarmed by the possible side effect of jaw necrosis form this treatment.
The dentist emphasised that this side effect is extremely rare - 0.01% risk of it happening, and only if there are dental problems or poor dental health already, and then still rare. He did point out that the oncologists have to explain all the risks to you, and I was very fixated on this (and other rare side effects) but he put my mind at rest.
@Tigress Thank you for your suggestions on the VA issue. (You are always brilliant on the forum, so thanks for that too 
) I’m only 8 days in on Letrazole. OK, so far, but I now know what to do in the short term, and to tool up for emergency measures. I had a lot of UTIs when I was younger, but have been thankfully clear of these for years. I have no wish for a repeat performance. They always seemed to happen when there was no chance of getting in touch of a doctor 
Have a good long weekend everyone 
Karen xxx
My research shows that vaginal oestrogen preparations have no impact on beast cancer recurrence rates, because vaginal preparations do not enter the blood stream.
My oncologist is happy with me continuing vaginal oestradiol pessaries.
Vaginal atrophy is awful, as you say effects urinating, and even wiping with loo paper can be incredibly sore let alone sex !!
I’ve stuck with the vaginal oestrogen and also started using the vaginal moisturiser “Yes” on the advise of the breast care nurses.
I’m not prepared to give up my sex life yet !!! Age 61.
I guess I might be slightly more relaxed about the oestrogen as my current cancer is triple neg and not hormone driven. I loved my HRT and miss it badly. So I’m keen to do what I can to offset the effects xxxx
I experienced VA on Letrozole, to the extent the ring pessary I had for mild prolapse, dislodged itself, and I didn’t know why -after several happy years with it in place. It was sooo uncomfortable! No-one at the surgery would help-two minutes for a nurse to hook it out, but no-"I was in tears and pain for days before crying on the phone to another GP who agreed to see me to remove it-i couldn’t do it because my own real fingernails were too long! I then saw several different gynaecologist people, who didn’t have the correct size-getting them was nigh impossible, so I was without for a couple of months, and ended up buying one to make sure I had it! After three months delay it arrived so I made an appointment with the intermediate gynaecologist clinic and had it fitted! Relief! I now use Vagirux 1-2 times a week. Before covid it was changed every 6 months, but now they say it is fine to be washed and checked instead. The Vagirux helps prevent UTi’s too! I|'m 79 now and as you say it’s quality of life now! I take Aromasin-exemestane instead of Letrozole and find it so much better with fewer side effects.