Problems down below anyone . .?!

Hi All

A tad embarrasing all this but need some help? For the last few months I have had about 3 lots of thrush and lots of itching,/ redness. Sex ( when I can be bothered(!) ) is also a bit painful and the redness etc is worse after.

I finally plucked up courage to go and se GP and she thinks I have vaginal atrophy ( nice at 45 me thinks) . She said it is caused by an early menopasue and not helped by tamoxifen.

I have been taking it for over two years since end of chemo _ I was dx at 42. She is giong to perscribe me an oestrogen cream to apply locally because she said that bc specialists say that this is OK as only a miniscule amount is actually absorbed into the body - it is just a local treatment.

I want to have this cream as am sick and tired of the symptoms but am just a tad worried about the ER thing.

Has anyone had these symptoms and/or been perscribed these oestrogen creams? Anyone know if they are OK to use if you had an ER+ cancer?

If its not one thing its another . Grrrrrrrrrrr!!

Love to all

Alise x

Oh darn it. I have had thrush a couple of times, but also got a period for the first time in months last month. Am 41 and on dose 6 of 8 (4 FEC 4 tax). Sex life pretty much non existent too…not that OH doesn’t find scars, baldness, a blue nipple and a cable hanging out of my chest in any way a distraction - what are men LIKE?

Have you tried to contact your Breast Care Nurse to be sure what GP says is right? Or call the helpline for this site - they are brilliant! Can’t KY jelly do same job?

All the best to you, I hope you get it resolved without any problems,
take care
Sue xx

Hi Alise,

I have been having similar problems caused by tamoxifen and zoladex. My onc prescribed vagifem tablets which have really helped. My tumour was also er+ so I use less than the recommended dose to try and minimise any risk. The tablets worked for me and I now use them just once a week. I’m hoping to get it down to once a fortnight in time. I think we need to take quality of life into account when making treatment decisions. I’m 43 (diagnosed at 41) and I am not prepared to have dried up ‘bits’ yet!

I’m not an expert but I think there is less risk using a hormone cream/tablet whilst on tamoxifen, as it blocks the uptake of oestrogen, but I don’t think I will risk I when I eventually move on to an AI.

Replens also helps, and is hormone-free, but I haven’t found it to be as effective as the tablets.

Hi Alise, i have the same problems with the atrophy, but thankfully not the thrush, but i started to use the replens as soon as i had my hysterectomy and i find it keeps you if not very elastic at least very well cleansed, i am on arimidex, so that doesn’t help these problems,as i have to pay for prescriptions and now have a ppp i get it via my gp, so it works out a lot cheaper

I’ve had a major problem with itch, blisters and bleeding in the ‘feminine area’ since starting tamoxifen … intially it was just when I had a period but now it is also happening part-way through the month too. I had tried thrush creams to no avail … not even soothing effect … went to the GP who advised that it is a hormone imblance common in menopause and usually treated with esotrogen pills … obviously a no-no for er+ patients.

I read a while back about a lady who was given a hormone cream to use and was advise there was no risk as it was not absorbed into the blood stream.

I can’t complain about my sex drive and I’m happy to report that when the opportunity presents itself (my man works shifts and we don’t live together) I have no problems with dryness or otherwise … my ongoing wish is that his days off and my itch don’t co-incide!

Hi Alise
I am on arimidex and have vaginal atrophy. My GP prescribed me an oestrogen cream which both he and my oncologist said would be OK if used sparingly.
I then saw a gynaecologist (because the atrophy caused a bit of bleeding) and he prescribed me an oestrogen pessary which he said would be safer though not to use it as often as women who have not had ER+ breast cancer. I still use it very occasionally. I have also used replens, as other people have suggested.

Gwyn

Hi,
I had awful problems with thrush …[started taking tamoxifen may 04]…my BCN gave me some SYLK vaginal lubricant to try…and touch wood has helped alot.
SYLK is also available on prescription now.

karen x

i am about to start tamoxifen… hmmmmm… i wasn’t looking forward to it and even less so now!!! I am laughing - please don’t take that as anything other - i think this is a v helpful thread… i have lost a number of things thru breast cancer and my cigs will be the next casualty but i’m damned if i am losing my sex life too!!! (OY>>>> CHAP…where are u???)

I have no advice to give you alise except to wish you all the best

jen

Hi Alise,
Just to say that I’ve had the same problems as you (lovely, isn’t it!) and have used a low-dose oestrogen cream for a couple of years now. I wouldn’t be without it, as even walking gets really painful, never mind anything else!!

Al the best,
Chatta

i was told i couldn’t have any of the oestrogen creams, they do one that can help with your sex drive, but not even allowed that! still waiting since feb this year for a referral to a sexual therapist who can help with things like dillators to help with the tightening up, by the time i see one i think that entry point will be closed! seems our lack of a sex life is very low on the agenda lol
Alison

Thank you girls for all you suggestions and help.

I went back to GP yesterday for perscription of ER cream and she seemed to be back tracking a bit and wants me to try Replens first and if that no good I can have cream ( a v small amount)

ANyway bought Replens - VERY EMBARASSING (!) and it was £9.95 for a course that lasts 2 weeks!!!

I am sure I have read somewhere on here that some people get it on perscription but my GP said not - does anyone know?? I cant pay £20 plus per month plus tamoxifen charges its SO WRONG!!! I didn’t ask for a bl**dy premature menopause so why arent we treated like a priority??.

Dont know if I can ever buy Replens over the counter again - I nearly died of embarrasment and it wasn’t helped when my 11 year old who was supposed to be looking at bubble baths appeared just as I was paying and said “What’s that?”!!!
I said it was for insect bites - the first thing that came into my head.LOL!

Love to all

Alise x

Alise

Hi All

Interesting thread - must get hold of some Sylk - couldn’t get on with Replens when I tried it years ago (on prescription) - don’t think my GP/onc would let me near oestrogen in any way, shape or form!

BTW - we have just moved into a house where the previous owners had installed a bidet. Not a romantic manoeuvre (this is bc after all!) by any means, but if anyone’s got one, I’ve found that it’s worth using ‘afterwards’ with just lukewarm/tepid water - it has really helped with the thrush problem.

X

S

reading this thread I think maybe there is more to what i thought was recurring thrush so thanks for highlighting it, I may investigate further.

Don’t know if i should ask but what the heck are Replens, I have never heard of them - please enlighten me!!

Hi all,

I’ve posted below the link to BCC’s publication on sexuality and intimacy which you may find helpful.

breastcancercare.org.uk/content.php?page_id=668

Kind regards,
Jo, Facilitator

AJ - I was also wondering what Replens were so I google … it’s a virginal lubricant, which according to the sales blurb assists with virginal dryness… can be bought on the internet so might be of help to the ladies who don’t want to have the embarrassment of biuying it in the local chemist.

Not sure of it would help my problem tho cos I don’t have dryness and no lack of sex drive (just lack of opportunity due to OH working shifts and not living together!) but I do have ‘the itch’ and the blisters

tamoxifen has a lot to answer for !

Hi All

I posted a thread about exactly the same thing a few months ago… I had thrush constantly… Canestan cream, pessaries helped for a little while but it always came back…
Can i just say my SEX life is abs brilliant and i hope it does not go away lol…
Seriously i was in the chemist 1 day and spoke to her and she suggested that i do not go into a bath anymore just have showers and i have did this and had thrush just the once in bout 4 months, worked for me might not for everyone but worth a shot…

Luv Allison xxx

Alise, i couldnt have sex any more because it was agony! so, i spoke to my specialist about it and she said i could have the hormone pessasary as it doesnt get inot the blood stream ‘down there’ and its perfectly safe or she wouldnt be recomending it to me. I was Prg+.
Have taken it as prescribed and VOILA i know have a normal sex life again. It wasnt so much dryness but thinning skin.Yuk

Hi all,
At Royal Marsden they prescribed me an oestrogen cream to help me deal with vaginal atrophy and to try to help with keeping damage ‘down there’ during sex to a minimum. I have noticed that if I don’t keep up with the cream, that I can visibly see the tissues sort of deflating, like a balloon with the air let out. But if I step up the cream, it all fills out nicely again. I used to suffer a lot with cystitis and thrush, both gone since I got the cream. Am I allowed to mention the name? (Orthogynest).
I didn’t have to fight to get this prescribed, they just did it for me at the hospital when I told them my concerns. They were absolutely clear that even ER+ patients were Ok with it, as very little is absorbed into the system, which i can vouch for because it made 0% difference to my hot flushes. But my GP was very unhappy about it.

I’m certain that I would have had a really serious problem with cystitis, thrush and worst of all with my marriage, had I not been given the little lifesaver of that cream two years ago. It’s worth fighting for. Maybe your cancer hospital is the first stop to get help with this.

What is the name of this wonder cream?! The one that is a topical oestrogen one? My doc is happy to diagnose this if hosp say it’s ok so we are currently doing joint research to find an appropriate one.

Pineapple, did you write about this recently? Did you get your OH to have a look?! Someone did and put name of cream on here. I have same prob as you, it’s not a lubrication thing.

Thanks in advance

Irene

Yes, Irene i got hubby to look and he said it looked like bright red tissue paper, but deflated baloon sounds exact!, she gave me these little soft pessaries called Colpotrophine. She said they are excellent treatment. I had to put one up for 28 days at night, but you need something in your knickers because it floods out all night! so it was a pain in the nexk but i knew it was just for one month. Then after we tried it out !!! hey presto it worked. Then i just put one up twice a week for maintenance. I get them free because its cancer related so covered 100% with my health cover over here. It definalty wasnt a lubrication thing just this horrible thin skin thing.