atrophic vaginitis

It’s probably not the most common or pleasant of subjects but has anyone else been diagnosed with atrophic vaginitis as a result of taking Arimidex or Tamoxifen. I have just been diagnosed with this and I’m really fed up of the symptoms (constant discharge, painful sex, loss of libido.) It’s just something else that cancer has done to me. I’m only 49 and I feel like an old woman :frowning: The doctor said the only remedy was oestrogen which I obviously can’t have as my tumour was hormone receptive.

lbx157

Hi lbx157 it’s really crap isn’t it.i’ve had exactly the same as you and there have been a few threads on here about the subject and it seems it is quite common.I started tamoxifen in March 2008 and had all the symptoms you describe for 3 years,its only the last 6 or so months that things have improved, the discharge has stopped, and I was getting bouts of thrush every few months or so but that seems to have gone now(touch wood).still got no libido and intercourse is sometimes painful.I’ve put a link below to one of the threads and there is some information about oestrogen creams and vagifem.I keep meaning to ask doctor about them but never get round to it lol.
wishing you all the best love Melxx

share.breastcancercare.org.uk/forum/anyone-else-too-sore-&-dry-down-there–t29414s275.html

Try Waitrose Baby bottom butter ! Natural ingredients only - not ideal but does help

Hi

I don’t think it is necessarily the case that oestrogen creams (if you don’t find Replens or other lubricants helpful) are totally off limits. In the Susan Love cancer book which I find useful and on her website

dslrf.org/breastcancer/content.asp?L2=4&L3=7&SID=132&CID=610&PID=29&CATID=33

she seems to say that only small amounts of oestrogen are absorbed and that some drs think that is acceptable. Now clearly there are some women who would not be prepared to consider deliberately using even a small amount of oestrogen, but depending on your circs you and the drs might come to the view that, on balance, you wanted to try.

When I was on tamoxifen i suffered from such awful dryness and itching that it kept me awake. it took me a while to work out it was not thrush or something else and by then i had a recurrence so am no longer on tamoxifen but on zoladex and letrozole. but i know that if the problem recurred, i would certainly not be able to cope with it on a day to day basis and would explore all the options. C2010

Hi Ibx

I am posting a link to the BCC publication ‘Sexuality, intimacy and breast cancer’ which you may find useful:

www2.breastcancercare.org.uk/publications/treatment-side-effects/sexuality-intimacy-breast-cancer-bcc110

Take care
Lucy

I’ve had a dry itch down below since the start of chemo 5 years ago, I’m also now 5 years down the line from periods so well into post menopause. I use Replens, but I find that Sylk applied to the outer part of the vagina on a cotton wool pad helps with the itching. There is also another product good product called YES which is American and claims to be the closest thing to your own natural lubrication. You have to buy from their website (it’s based in the UK) and you can get some trial sized samples of their different products in a pretty little gossamer bag for about £10.

An old fashioned home remedy is also to try inserting some natural yoghurt on a slim tampon. It does actually work!

A gynaecologist I was referred to a few years back specialised in all these female problems after BC (my oncologists referred me to her clinic). She said whilst they don’t like giving women anything hormonal they weigh up the pros and cons and if a woman’s quality of life is terrible they will prescribe. If you google for the Royal College of Gynaecologists/Obstetricians there are some podcasts. I listened to one by a female Consultant giving a public lecture in London and it went into to all this stuff. Sorry, I don’t have the link as I deleted it from my computer, but if you can find it it’s very informative and she goes into women who have had breast cancer as she’s seen many at her hospital clinic. It lasts about an hour but you can just listen to the relevant bits.

Hope this helps - it’s one of the most miserable aspects of all this. I have been there. done it and got the t-shirt as they say.

I am determined not to suffer from this as a result of the tamoxifen and have found the following really helpful! Firstly keep all the skin in the area well hydrated as dry skin cracks…ouch! So aloe vera (pure) is brilliant on the outside skin as are vit e capsules …inserted! (sorry if tmi)…my point being that skin care dosent only include the bits you can see!!!

I had the low dose oestrogen pessaries for a while, there is usually no problem with getting these prescribed as the dosage is so tiny and in my case there was no hormone involvement with the BC. They were absolutely great, the itching and dryness stopped and I had a libido of sorts whilst on them. Then I had a post meno bleed and a Consultant Gynaecologist and a Registrar at my local hospital told me to stop using them. I told them about all th problems I’d had prior to being on them and they both looked at each other, looked at me and said “what do you expect, you are post menopausal”. As these doctors were women I was not impressed, I expected some empathy!

Hmmm its the women doctors and consultants that I also find look at you and say that! I remember when my oncologist for chemo said at our first meeting ‘Well you are pre menopausal now but the chemo will sort that out’ very breezily…she looks about 17 herself!
…add to that the young female surgeon who said gently before my surgery ‘well its not as if you’ll want to look like a 20 something…after all you are 49’…wtf???

I wonder sometimes what they will be like in 20 years time!
I also wonder what sort of quality of relationship some of these people have themselves…if their relationship is poor they will not be interested in nor understand those who have good relationships with their partners…

lostinfrance, this is too true! I also absolutely hate having a smear test done by a woman as every one I have seen has been quite rough. I’ve had a nurse practitioner and a female GP at my surgery that left me walking like a cowboy for the rest of the day - the GP in particular just seemed to shove the speculum in without even asking me to take the usual deep breath. No, I like a man doing that stuff for me, they seem to be far more gentle when they deal with your lady bits. Same goes with breast examination, every time I get a woman doing it the armpit on my bad side hurts like hell for days after. Have to admit the male surgeon I saw on Tues was great, firm in the way he did everything but no discomfort.

Would initially try replense, sylk, yes or glide… Might take a month or so to work but would def try that first… Your gp should be able to prescribe it and if it doesn’t work then see if he will prescribe vagifem.

Vagifem is a very low dose oestrogen pessary which does help and actually produces less oestrogen than your body produces naturally from the adrenal gland there are two doses… A years worth of the lowest dose is equal to one days worth of normal HRT… If your gp won’t prescribe it ask your onc and if he isn’t helpful there are 3 specialist clinics in England who deal with menopausal symptoms for breast cancer patients and I was at a study day at one in London earlier in the year and they take out of area referrals… They are very aware of how problematic these symptoms can be and how reluctant people are to talk about them… It’s such a shame that when you do have the courage to discuss you don’t get any help :frowning:

Lulu x

Thank you everyone for your comments at least I don’t feel as though I’m the only one with this problem now. I’ve tried replens but didn’t like it (it just kept running out of me all the time), Sylk is good I know (if only I could actually get myself in the mood for sex!!!)but didn’t realise the GP could prescribe it, so that is helpful to know. I’m also about to try something called Balance Activ (just google it if you want to know more) as the GP thinks it might help with the discharge as it is the only type of these products that actually restores the natural ph balance of the vagina. Unfortunately it’s not available on prescription but I will try anything that might help. Will let you know how I get on.

lbx157

I’m using Gynest cream again now after a long chat with the onc about the risks. Apparently opinion is divided but my hospital team realise that women need some “quality of life” - I guess that’s just another word for some decent sex.
I did try Replens but didn’t think it worked and I objected to paying £11 for a small tube of what is 99% water. Perhaps you can get it on prescription?

Lin

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It was the Vagifem pessaries that were blemed for the first post meno bleed I had (the possibility does get mentioned in the notes that come with them). However, they were not to blame for the second incident as I had stopped using them about 18 months prior to it. I had a d and c in the summer after the second bleed and things seem to be better. They gynaecologists did say you can get a bleed from time to time because one or both of your ovaries can try to fire back up (but there is nothing to get them going). However, you still have to get it checked out.

Linstar, some GPs will give you Replens on a prescription. Mines refused as she just said “well I see you are already buying it”. Getting anything from my GPs is like getting blood from a stone, but I know other on here have said their GPs were OK to prescribe it.

Cherub I’m so annoyed with your GP! that is ridiculous you have a free prescription and should get everything on it… You only have the problem because of the other medication and treatment your having so she should def prescribe it! My gp gives me prescription for lots of things I could buy like paracetamol and lactulose but I need them because I had cancer and cancer treatment… It’s not like it’s just an annoying one off headache!!!

Yep, Replens (and Sylk) also available on prescription from my GP. She even offered a prescription for aspirin the other day (I’ve been recommended to take 75mg per day because of my personal risk of bowel cancer). As the aspirin costs me less than £2 a year, I grinned and politely declined. However, I agree with previous comments that just because you can buy something OTC doesn’t mean it shouldn’t be prescribed to you - grrrrrrrrrr.

I know, especially as it’s not exactly cheap. My nearest Boots is on a retail park at the other end of town so I tend to go there when I have a lot of stuff to buy - Replens fairly racks the bill up as it’s about 10 or 12 quid.

Hi all,

I was obviously too subtle when I waved my packet of replens in front of the GP and asked if it was ok to use!

She just said ‘yes’. Think I might get back to her and check it out. So glad for all these comments ladies.

I’m suffering at both ends lol, gum disease seems to have settled in to stay with me. The corsodyl doesn’t seem to clear it and I’m buying that OTC too. Time for a rethink!

Thanks everyone.

Carolyn x