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chemo, tamoxifen, sleep, sex and all that jazz......

212 REPLIES 212

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Having the same issue re vaginal tightness etc following chemotherapy, radiotherapy and now on anastrozole , I was at my wits end! I don't want to lose this part of my life too! I have Sylk and Replens on prescription. I brought dilatory but frequently can't be bothered to use them. I have now discovered a new treatment available called the Mona Lisa Touch laser treatment which apparently works incredibly well. It's expensive in England, seems so much less in other countries which isn't fair! Has anyone had this treatment? Advice please.

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Hi Sheil

I have been following this thread with interest as I too am suffering quite badly. Was told by my GP a couple of weeks ago that I have the worst case of atrophic vaginitis she has ever seen which probably explains why I’m in agony! I’m waiting for an appointment to come through to see the Gynaecologist and in the meantime the following are giving me some relief:

2 vit E caps + an out of date acidophilus cap inserted each night aided by a dollop of aloe vera gel, plus in the morning I fill one of the Replens (usless) applicators with aloe vera and whip that up there for good measure. It doesn’t make any of it go away but the aloe vera gel certainly stops the itching.

What a life!

Daisyxx

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Anything to add? Only that its gone from bad to worse for me. I've got Replens on repeat prescription, been using it for about 3/4 months and hasn't made the damnest bit of difference. Still very sore. I've got a drawer full of everything that's been suggested except for the vit E (nothing's worked). So bought the vit E caps today, ever the optimist!

I really resent losing this part of my life, and although OH is lovely and considerate and caring, I just know that its not good.

I'm on letrozole and am wondering if that is particularly bad for this side effect. Would anastrozole be any different?

I am planning on making an appointment if the vit E doesn't help, not sure whether it should be with gynea or oncologist??

S
X

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

I am bumping this to see if anybody has any comments to add !

x

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

Bump

Re: chemo, tamoxifen, sleep, sex and all that jazz......

A soporific is something that sends you to sleep. I reckon Tam messes with my sleep because when I was on it, I was frequently awake three or four times a night, even with hot flushes controlled by Citalopram. I've been off it for a fortnight and even though the hot flushes have returned (how does THAT work?!) I have been sleeping better and better. Last night I didn't wake up once and woke feeling almost refreshed. Pooped now, and will have an early night, but it was nice to wake up feeling almost human for a change.

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Tam is the opposite of what?

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Convinced Tam is the opposite of a soporific. Have been off it for a fortnight and haven't slept as well in ages.

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Thanks as always, Ladies. Since Chinook's given us so much information, I must admit I did eventually insert a capsule without the help of my OH who obviously isn't as helpful as hers or perhaps I didn't trust him to get it in the right place (it's been a while) lol. I'll have a look in Holland and Barrett as well.

I did look up Scream Cream which was mentioned by someone earlier. Hmmm. I felt like screaming the last couple of times I tried sex but sadly not in a good way 😉

Anyway, always glad to spread a smile around! Ya gotta larf.

Monicas

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

bumped....

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

you made me laugh so much Chinook & Monica!!! You can just use the capsules....shove it up and wait...it will disolve!!!.....or find more interesting ways 😉 You will have lovely skin!!!

For those trying to find 'PUR' I made a typo....its PJUR google it!!!

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

Hi Monicas
I read that thread about the vitamin e oil. I got some on Thursday and it wasn't in capsules. To be honest I thought that was just how you bought it and split the capsule and rubbed it in externaly. I'd be very reluctant to put a capsule inside as they are supposed to disolve in the acid of the stomach and they might not disolve.
I don't mean to be too graphic but OH offered to help with application of the oil and it was taken futher inside. He doesn't seem to be having problems this morning and neither do I.
I got the oil from Holland and Barrett £11 . It says don't use on split of broken skin.
Happy days
Chinook

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Hello ladies

I seem to recall someone on here talking about using Vitamin E oil internally to help with moisturising/lubrication etc. I don't think whoever posted it mentioned how to get it up there, which is a bit of a logistical nightmare. I can't face trawling through all the posts, so if you posted it and/or know how to do this, please can you let me/us know?

It comes in capsules so if you can insert the capsule, easy peasy, if not I'm a wee bit stumped. Any suggesetions (serious ones, ladies, no hanging upside down or use of complicated kit) will be gratefully received.

Hope you're all hanging in there - not upside down, well, whatever floats your boat...better sign off now LOL

MonicaS

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

Thanks for starting this thread so many questions doubts and not knowing what is going on have been answered. Thank you.
Silver xxx

Re: chemo, tamoxifen, sleep, sex and all that jazz......

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.

MonicaS

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

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.

Much love xxx

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

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

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

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!

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

I know I shouldn't laugh, but this thread has been the funniest thing I have read in ages!

You lot are fantastic!

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

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....

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Bump

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Bump

Re: chemo, tamoxifen, sleep, sex and all that jazz......

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.

Let us know if you get any good results.

S
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Re: chemo, tamoxifen, sleep, sex and all that jazz......

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.

Monicas

Re: chemo, tamoxifen, sleep, sex and all that jazz......

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!

S

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Hello
I am so glad that i found this thread!

I am 40, 38 when diagnosed.

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!

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Hi Girls,

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.

Tina
x

Re: chemo, tamoxifen, sleep, sex and all that jazz......

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?

Re: chemo, tamoxifen, sleep, sex and all that jazz......

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.

Whole thing is just a big pain in the.......

S
x

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Just come across this piece on vaginal atrophy and oestrogen treatments after BC.

http://www.ascopost.com/articles/january-15-2012/estrogen-for-vulvovaginal-atrophy-in-breast-cancer-...

Haven't read it properly yet, but might be of interest.

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

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.

Re: chemo, tamoxifen, sleep, sex and all that jazz......

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.

Re: chemo, tamoxifen, sleep, sex and all that jazz......

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?

MonicaS

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

Hi Girls

Here is a quick update: My brother who is a retired GP confirmed my suspicions that no-one wants to get sued and sure enough the official letter came back from the hospital...NO WAY...too dangerous for me to have either systematic or topical HRT.

I have sent the literature confirming that topical HRT has yet to be shown as increasing recurrence, but they have suggested Replens (tried, but now only works for a few hours and hurts to use) and acupuncture for the flushes, (I'm having my first session today).

I cannot afford acupuncture every week for the rest of my life and anyway that doesn't help with the worsening VA.

The hospital have also suggested I see a certain women's expert who only consults privately in another city. My GP says she is a well known and a great lover of progesterone cream? My cancer was oestrogen and progesterone sensitive...however what maddens me, is that if she can suggest this, why can't my GP or Onc try this on me? CRAZY!!!

SO...I have now asked for a referral to the useless Gynae who failed to warn me about what to expect after my surgical hysterectomy and ooperectomy! The reason I want to see this guy rather than someone else is that I am determined that he gets the message that he HAS to warn women of this problem and look into what can be done for us BC survivors!

The attitude is that we are lucky to be alive, but I personally would rather take my chances and have a "quality" to my life..especially as all the literature that I read is so conflicting!

Whilst Replens (I get on the NHS BTW) may ease the problem, it doesn't solve the problem and as I mentioned before, in a lot of cases VA just gets worst.

I'm on a mission now...I'll keep you posted...

N x

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Ladies, thank you all for your comments. I'm waiting for a free sample of Replens before I start my one-woman review, although I don't know if I'll have the heart (or whatever) to work through them all...

By the way, just to complicate things, I'm a cyclist. Although I haven't been out for a while due to weather, gales, etc. but am hoping to get back in the saddle big time when the weather clears. So, it's really quite crucial to sort things out Down There in more ways than one! However, I am going to get a new saddle which is advertised as "reducing soft tissue pressure" LOL. All those in favour say Aye. Sorry, was that TMI?

Monica

Re: chemo, tamoxifen, sleep, sex and all that jazz......

You should be able to get it on prescription from your GP so you shouldn't need to pay for it.

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Monica - my troubles were not as prolonged or serious as yours but after treatment finished I was terribly uncomfortable and thought I had constant thrush. Was extremely sore. Did some research and bought some Replens which I used every 3-4 days for about 6 weeks and found that it really helped with the discomfort. Have only had to use it a few times in the last 18 months so I think it is worth a try. You can buy it on Amazon at a good price and I find the re-usable tube the most convenient. Good luck. x

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

Forgot to mention...

Vaginal atrophy doesn't get better of it's own accord and in a lot of cases gets worst...

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

Monica ive recently started using replens and no change as yet rang helpline yesterday and she said stick with it. had been using natural yoghurt up until then with some relief but def wouldn't want to try sex whilst using it. Might go see my GP to see what she suggests i try.
xxx

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Soo glad I found this forum! I've had the vaginal problem on and off since I had my son, at age 32. I had no idea what had hit me. Just another side effect of childbirth/pregnancy no-one tells you about... After my daughter's birth my doctor told me "your vagina looks like a 65 yr old woman's" I was 38 (who's got mine? and can I get it back? I asked). Started on HRT at age 47-ish before menopause becuase of sex problem cycle - have sex, get cystitis - does wonders for your libido. Had no BC in the family and no risk factors. It helped but didn't solve the problem completely.

Came off HRT for 2 yrs, 2005-2007 and nearly went nuts so went back on. DX with BC, grade 2 and ER and HER2 receptive in Sept this year. Had WLE and SNB in Oct and am now on Anastrozole. Menopausal symptoms - hot flushes etc have gone ballistic and that certainly hasn't helped the sex problem. I'm desperately looking for something that works and isn't carcinogenic. Tried Sylk but that was a disaster. Before I embark a one woman trial of Replens/Senselle/Yes/Balance Activ etc, I'd like to know if anyone's got feedback on them.

TBH at this point I'm almost ready to call it a day on the old sex stakes and take up knitting. Unfortunately my husband isn't...any info/feedback from fellow sufferers would be really helpful.

Monicas

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

Hi Girls

Just wanted to revive this thread!

I have had 2 x local recurrences and 2 years ago had a surgical hysterectomy and ooperectomy: Topped with arimadex, I've been in a worstening post menopausal state ever since.

I am experiencing anything from 20 to 40 hot flashes a day and severe vaginal atrophy. I couldn't even contemplate sex (2 x years since...). Replens is really painful to use and my skin splits all the time. My bladder muscles have weakened and I have constant UTi's etc.., etc.

I have a 50/50 chance of mets yet I have begged my GP for HRT! Having read everything I can on the subject I am amazed how little is being done to help women who suffer from this and can't take HRT. Everything I have read is conflicting and the real truth is that because we women don't report this because of embarrassment (80% don't) - there has been very little research or clinical trials?

My GP says he cannot subscribe without agreement from my onc who says it's too dangerous, yet in the USA they (the Oncs) give local estrogen creams for the VA as they recognise the importance of vaginal health. I am pushing this and am about to seek legal help through patients association?

I was absolutely mortified going to my GP and having to discuss this problem and even more when he had to do an intimate examination (which cut me) and even more again when my GP said they were discussing my case at the next Onc meeting!! However, they are doctors, we are sufferers and unless more women pluck up the courage and report this, we won't get the help that's needed!

Please, I urge you all seek help as the more of us that do the more likely we are to get it and research done!!!

Thanks in anticipation...

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Bumping up

Re: chemo, tamoxifen, sleep, sex and all that jazz......

And who wants to pay for it? lol

Dx

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Better still, get your GP to prescribe it, then you won't have to pay for it!

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Been meaning to get some of this. Am off to Amazon to order some, OH - gird your loins!! Well maybe not right away.....

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Re: chemo, tamoxifen, sleep, sex and all that jazz......

I can vouch for Replens. I have a good GP who prescribed and I now get it on repeat prescription. What a difference to have it acknowledged as a real problem with a real solution. Much better than KY and as someone else says explained well on the website. J.

Re: chemo, tamoxifen, sleep, sex and all that jazz......

hi, i can recommend "yes". i like it because it is completely natural and organic. you can oil based and water based ones. its not sticky in anyway and really does the trick so to say! sadly a bit pricey but have a look at the site "yes yes yes" (not discreet!) and there are loads of testimonials out there.

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Some GPs will give a prescription for Replens, but mines wouldn't because I was already using it when I was on chemo - never mind the fact I was skint as I wasn't getting any benefits and I was living on savings!

There is a fairly new product called "Yes" from the States which is recommended for intimacy. You have to buy it online (I saw it advertised in Amoena magazine). For about £10 you can buy a range of different types of trial size samples. They come packed in a lovely little gossamer drawstring bag with silver stars on it, so it looks very discrete. It's advertised on their site as being the closest to the body's natural vaginal lubrication. I'd recommend giving it a try.

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Ninja - if you look on the Replens website that explains it well. It is not a lubricant for during sex so much as a treatment to re-lubricate. I used it for about a month and found a great improvement - the horrid itching and sorness went. Had a couple of occurances over the last year otherwise have not had to use it for at least 8 months. I buy mine from amazon in the reusable tube (did not like the individual applicators) but have heard other ladies get it on prescription. Good luck. Marli

Re: chemo, tamoxifen, sleep, sex and all that jazz......

Yes they can prescribe it.