Good news, bad news. Used Replens for about 3 weeks and it does seem to help with general lubrication/discomfort etc., so I gave it the sex test. Bad. I mean really baad. Don’t know where I go from here except possibly back to the GP but I don’t think they have any solutions.
Even when I was on HRT and used oestrogen cream it didn’t completely cure the problem, but at least it was bearable (occasionally veering into pleasurable - huzzah!). Which was great compared to what it is now. Hey ho. Time to stop dyeing my hair blond and start shopping at Damart…and I don’t even have any grandchildren!
By the way, I’m thinking of asking for a swap from Anastrazole becuase of the nuclear hotflushes and joint pains. Anyone else in the same boat?
You might want to try a product called “Yes” that’s available online. For about a tenner you get a little gauze bag of samples of the different types of moisturiser they do. I think it’s good and they claim it’s the nearest thing to the natural lubrication produced by your body. The little bag of samples is pretty too - if you left it out people would just think it was face cream or something, there’s nothing to make you think it’s for sex.
I am pleased to see this thread being resurrected. I too have tried replens and something else that was mentioned on here too, with little help. I would be keen to hear of others experience of ‘yes’ as I remain keen to have a loving life with my hubby of 46, with me being 50. I think we should be advised of this side effect of treatment. It is only after all the treatment that the ongoing effects on your life become apparent. This has made me quite down after the euphoria of coming through treatment. Any comments on ‘yes’ would be appreciated. J.
Thanks Choccie - Reading the first bit I was getting quite hopeful, but then read to the end, so it seems we’re still no further forward. One says yes, one says no. Looks very representative of the views of the issue in general though.
I have been trying Replens, even got prescription from GP after buying a few tubes as I was determined to give it a good few months, but alas…still painful and definitely dampens any libido I might have left. I have just started on the measured dose version - less painful to use but no more effective - yet - she says with undeserving optimism! Tried Yes too, in fact also tried so many I forget the names, but nothing working yet. I even got round to telling OH (I was hopeful the stuff would work eventually), and he has been very understanding, but it was something that was good between us (may be oldish but only married 3 years) and I am really loathe to wave the white flag.
It is the ‘atrophy’ word that gets me - one reason I rushed to the HRT shop at the first sign of a hot flush. It is very depressing thinking of your bits atrophying (is that a word?)
Monica - I’ve been on Femara/letrozole for a year and was about to ask for a swap - which will probably to to anastrazole. I’m not hopeful, as I think these side effects are really just a sign of the damn things working. They suck the estrogen out of you - good for BC but hellish for making you feel like 90. Don’t give up on the blond look yet though!
I did read something about Lidocaine (I think) on the US site but thought that had a numbing effect so am thinking would that not have undesirable side effects…you’ll have to work that one out as too reserved to explain thoughts any further.
I also noticed the declared interests bit (or whatever it’s called) where the doc who is pro treatment has involvement with quite a lot of pharma companies but the doc who was anti doesn’t have any declared interests.
Then again, there’s the question of quality of life. And life for me and so many women involves an active sex life. There are so many additional risk factors for recurrence, would it be possible to (for example) commit to never letting a drop of the demon drink cross your lips, which would then mean you’ve lowered your risk enough for you to increase the possible risk by doing something to improve your sexual health? Do the sums add up or am I being just too simplistic?
I am on Tamoxifen and suffered dreadfully from vaginal dryness and thrush infections.
I was prescribed a very low dose vagifem pessary - used daily for twelve weeks-oh the blessed relief. I have been absolutely fine now for four months.
My cancer was oestrogen positive but it was such a small dose and I was so distressed I decided if there was a risk it would be worth it to feel normal again.
Replens didn’t work for me either, in fact it made things worse.
Mastectomy was devastating, hair loss was excruciatingly painful psychologically, first recon was a catastrophic disaster and now i have the ‘rebuilt dead boobs’ again!
Our sex life is non existent, we did it once on Christmas Eve and it hurt!
Words can’t express how i mourn the old me…i find it all so hard to deal with. I want my breasts back, i do not want to take a pill each day,i want the thickness of my hair, i don’t even want to think about BC ever again!
I hate what it has done. My poor OH has suffered beyond belief and i have only just realised it!
Hi Choccie
My thoughts exactly - but it is one of those very difficult choices to make. Strange that yes, I seem to have made the decision that I will still have the odd demon drink without such deliberations, but putting actual estrogen back in seems to be a more challenging choice. But the quality of life argument is becoming more powerful.
NAZ - I really empathise - loosing the ‘old me’ - I really quite liked the old me. And my poor old OH - god love him, he’s been a star, but I have to wonder how I’d have felt if all of a sudden he wasn’t a willing participant. But then again, in sickness and in health… It all sucks, for want of a better word!
Hello girls, and thanks for all your comments. No solution but misery loves company, eh? Still trying Replens and will report back later. Sure you’re all gagging to know what’s going on in my bedroom! (mostly a lot of night sweats and snoring, lol)
Sheil - I might try the Lidocaine, though, I could use some numbing effects and at least one of us could have fun
Re the Demon Drink, there’s another thread on here about diet but I found it hard going if you’re not a biochemist. Also, as usual, the information you get about diet is contradictory - oncologist says a healthy diet with lots of vegs, fibre etc and moderate alcohol is best. Other sources say no booze, no red meat, no butter, no cheese, no sugar…I think the stress from worrying about it probably worse than the drink. I have app 3 small glasses of wine (ish) over the weekend and no alcohol in the week.
I’m currently ploughing through Dr Susan Love’s Breast Book - everything you wanted to know about breasts but were afraid to ask - and then some. She is a guru of BC and she says “high intake of folic acid, e.g. spinach, broccoli, corn, legumes and multivitamins appear to mitigate the excess risk of breast cancer from alcohol” Hurrah! Pass me the wine and another heaping helping of spinach.
Hi Monica
Yep, I read that chapter too - the spinach martini!! Took to eating quite a lot of of the stuff in the hope it cancels out the wine. I now even grow it and have got my seeds in for this year. The things you do!
I’m just back from last day at BCC’s Moving Forward course (which was fab) and they handed out samples of various ‘lubricants’ - I’d tried them all already! I deserve points for my efforts.
Has anyone come across “scream cream”? Dreadful name but some US breast cancer forums are raving about it and even though it’s prescription only it doesn’t have anything that affects hormone treatment. Am v tempted to ask my surgeon about prescribing it. If I can get past the name… (if you google it with breast cancer the forum discussion should come up. The prescription bit is in a PDF file…
Hi all
I’m not entirely sure what my body is doing at the moment. I think I’m menopausal then I have yet another period. I’m 55 and had tamoxifen for 5 years. The Joy of Sex seem a long time ago. The tamoxifen seemed to flatten the desire and I sort of feel like I’ve got out of the habit.
I’ve been reading comments about diet etc and how good spinach is for me. Except I’ve just had two kidney stones and guess what they told me to avoid. Now before anyone says but theyre not life threatening they arn’t much fun either. It does make you think. If I made a list of all the things I should eat and all the things I shouldn’t I wonder how many would be on both lists?
It isn’t that long ago that they thought smoking was good for you! I’m beginning to wonder if the research and statistics can really be trusted and if I only should pay attention to the things that I like the idea of.
Meanwhile it’s Sunday, work tomorrow so pass the wine.
Happy living
Chinook
P.S I hate spinach!
Well…when I started this thread…nearly a year ago…I wondered how many people had problems and wanted solutions…wow!
A year on I can report back…!
I am on tamoxifen and it has a lot to answer for…but so have we! My experience so far has been on the lines of no its not quite as good as before bc…but its not bad use it or lose it and keep your skin in good condition has been my motto! Aloe vera gel applied to ‘lady bits’ daily keeps skin in very good moist condition therefore no cracks!
Vit e capsules as lube are very good and good for the skin, if extra is needed…and often none is some stuff someone on this forum mentioned called Pur is very good too…this sort of stuff needs to be used daily.
So to conclude rather than ad hoc sex without a thought or a care is maybe not as easy…with some forward planning its possible!
Its always interesting to me that we all booze away whilst saying nevermind the risk but are frightened of taking or not taking prescribed drugs
Anyway good luck ladies…and the scream cream looks interesting xxx
Thank you so much for this thread ! I have just started on Tamoxifen and I am waiting for the dreaded ‘drought’ down below. I love sex so does hubby it is a major part of our life and I really want it to continue. So I will be looking for any advice about this.
Sommer43 - you SHOULD laugh. We should all laugh as much as possible. Keeps us sane or as close to sane as we can get, which personally speaking probably isn’t very close
Naz/Sheil - you put it very well. We all want the old me back again, with just the problems we thought were so important before the BC Fairy left her toxic little gift. We’ll never be the same as were before but I’m hoping the new me will find/create a new normal that doesn’t involve freaking out over every little twinge and cough, and agonising over every (tiny) glass of wine. I think that’ll take a while.
My OH has been great too, but I’ve spent years supporting him during his health problems, so it seems only fair.
Still trying Replens and will report back later. Sure you’re all gagging to know what’s going on in my bedroom! (mostly a lot of night sweats and snoring, lol)