Hope you still join this forum.
I have just registered because I read you mentioned Colpotrophine - How did you get hold of it in the UK? I used to live in Brazil and my gyneco prescribed it to me years ago but I never had the guts to apply it as I had had breast cancer. Recently I am having to reconsider it all as I couldn't bear the pain going thru a cervical screening test.
I look forward to any info re this medication.
All the best
Hi there. I had very similar problems to this. Soreness especially after sex which itself was very painfull and endless bouts of thrush. Plus having to find loos all the time as I didnt seem to be able to hang on anymore when I needed a wee. I felt so worried, thinking 'what on earth is going on now!' especially with the incontinence bit.
My breast cancer nurse suggested a creme to be put in vaginally with applicator and this is Ortho-Gynest cream. Like the one you are talking about it does have some oestrogen in it but a very tiny amount and I was told that this would help the problem locally and not alter anything else. The cream was wonderful! The problem with the loo completely dissappeared and sex is definately a little easier. I still get some thrush and soreness from time to time and the loo problem can come back a little if I stop using the cream. I use it about once a week.
I had a low grade cancer but had to have two lumpectomies narrowly avoiding a mastectomy. I was on tamoxifen for six months then they altered to arimidex for two years then it was agreed I could stop taking the tablets as the arimidex was playing hell with my joints which were already not great. I had radiotherapy only after surgery.
Another great product I have recently been using which again was suggested by my breast nurse is SYLK, a natural personal lubricant, made in New Zealand from Kiwi Fruit. http://www.sylk.co.uk
This is absolutely fantastic for making sex a little easier and I recommend it to everyone. Purely natural so no worries about this.
Good luck. McBrown
I have had thrush alot and the doc has given me a couple of treatments for it but it always comes back. It went for a wee while after I had a period(and they do not come very often) They took a swap as well but it was negative so now Im back to square one. It is also very dry down there but that is not a major issue as I have a complete lack of sex life (poor me or lucky me maybe)
I don't know why pre chemo that the medics don't waqrn us that this vaginal atrophy could happen. I was so shocked and upset when it happened to me, particularly as I didn't klnow what IT was.
Consequently I felt really embarassed trying to bring this up with bcn.
I am ER+ PR+ and I take vagifem and replens. Now at least sex is possible, but not nearly so pleasureable as it once was.
Hi, I realise this is an old thread but I wondered how people were getting on - I've just read your posts because I was at the gynaecologist today because of vaginal atrophy and she has recommended Femara, so I did a search on the forums for information.
So - IreneM - did you start taking it and if so, how are you getting on with it? I am a bit nervous although I do take Pineapple's point that the tamoxifen should mop up any stray oestrogen that gets into the system. But what happens when we stop taking the tamoxifen?
Pineapple, is your colpotrophine a non-oestrogen alternative?
Any advice will be much welcomed (and also by my incredibly patient and long-suffering husband)
No, my consultant didnt ask to look at me either! i saw her tried to hide a smirk though when i said my husband had given me an examination down there.lol
The replens is just a lubricant so thats why it didnt work on me and my poor thin skin.
It was my GP who first sugested it saying it was an excelent (the stuff i use) treatment for my problem but because i was prog pos he wasnt allowed to perscribe it without the consultants say so. She didnt hesitate saying it was perfectly safe. Its just one thing after another isnt it. People have no idea when they think your treatment is finished they think you just immediatly get back to normal. They dont know the flippin' half of it.
I am alot less bone achey with this femara though so pleased and i am a couple of kilos lighter. In the mornings i couldnt walk for 5 mins as my ankles would be so stiff and felt they would snap if forced. But now i can jump out of bed and run to the loo no stiffness.
Pineapple, I tried at my last hosp visit to discuss this but was fobbed off and told to see my GP, who in turn said she didn't know and so we asked the BC Nurse, who in turn didn't know either, and she saw the onc and he gave this advice via her!!!
Hi Irene, I have a similar prob and friend is a nurse practioner who prescribes and she says as cancer related!!! sylk and Replense can be prescribed, I bought Replense but it has got parabens in which I have been trying to avoid, so I am going to ask gp for sylk as it more natural and to give that a try. It does take a while to feel benefit apparently.
Good luck and let us know how you get on
Irene, i tried replens but it didnt have any effect at all. I dont think a nurse can give info like this and you really need to check with your onc.
The BC Nurse spoke to a doc about this and she recommended not using any topical hormone cream in my case. I was recommended Replense and Sylk and have emailed my doc to ask for either on prescription as they are quite expensive. Apparently, even though I don't feel there is a lubrication problem, there prob is! And these creams will improve elasticity of vagina wall (poor elasticity caused by atrophy, aging) as well as lubricate.
I'll keep you all posted if it works but I'm told it will be about a month before I see a difference.
I suppose when you think about it, if we take hormones or phytoestrogens (and we do every day in our food) if the tamoxifen etc is doing its job it will block the hormones so really it shouldnt matter if we take extra hormones or not! if you see what i mean.
Just been on to my BC Nurse who couldn't really help but is going to ask one of the doctors on my team tomorrow and get back to me. Fingers crossed.
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.
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
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.
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
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
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 !
I've posted below the link to BCC's publication on sexuality and intimacy which you may find helpful.
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!!
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.
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 Â£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 Â£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
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
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,
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
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.
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.
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 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 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.
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,
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