If you are seeking for a safe lubricant, try something based on silicone. I usually use "Synergy hybrid lubricant", I regularly buy new portions on edenfantasys.com and I've never had problems with this lube.
The gynae department of my local hospital is using a laser treatment once a month for 6 months in the vagina.I am not sure how available the treatment I am getting is in the UK. It regenerates the mucous releasing cells or something like that. The treatment lasts 30 secs and then you are done, After the 6 sessions you don't need to go back any more. My hospital is offering it for pateints who are monopausal due to hormone treatment as well as people like me (on anastrozole and already post menopausal). It seems to be working for the vaginal dryness but not for the outer area. Better than nothing.....Maybe its available privately in the UK?
Hi, thanks for your post - I'm always interested in how some of us come to terms with hormone changes, BC and sexulal feelings. I posted recently here on "Flibanserin" - allegedly the female equivalent to viagra but have not had any replies as yet. My husband and I have managed lubrication issues, and actually the old traditional KY seems good enough for us, although I've tried most things.
However, my main problem is that I have zero libido and no sexual responses to stimulus. Having said that, I do love my husband and certainly don't find sex repulsive or painful so that's good. But apparently, this 'flibanserin' has nothing to do with hormones or oestrogen and is considered safe for oestrogen receptive breast cancer patients. I'm brewing for asking my GP but haven't got around to it yet .... Maybe you'd like to find my post and read the links? I'll be interested to see how you get on talking to your GP - keep us posted! love Cherry
I haven't posted on here for years but I thought I would contribute to this thread as I have had vaginitis for the last few years and my libido is through the floor. I recently went to my GP who referred me onto a Gynaecologist. He went through everything I had tried (Yes, Replens, etc, etc and stated that they were useless). He gave me Ovestin 1mg cream which is to be used every day for two weeks and thereafter twice a week. After two months I can now say that it is fantastic. My 'bits' are almost back to normal and I now have no pain or itching. It does nothing for my libido however so I am off to see him today to talk about a hormone product that he says, even though I am Eostrogen positive +++, I can still use safely. I would advise anyone of you that has been suffering with vaginal dryness to ask their GP to refer them to a Gynae and ask them for Ovestin.
Hi. Thank you for the reply. I went to a pharmacist to ask about the gel and they talked me into repeating the thrush pessary with three weeks of pasting on the new double strength cream that Canesten make! I think if this doesn't work I'll try the Balance Activ Gel if it's all natural. I may look into the tea tree oil too.
My Doctor has said that after we've tried various things that she may refer me to a gynaecologist. To be honest I would like to NOT have a hospital appointment for a month or two.
At least I'm here I guess!
Hi. I haven't posted here for months - life has been really busy and some sort of normality has returned. But I find myself turning to you lovely ladies in the hope that someone is experiencing the same as me!
I have the most absurd amount of vaginal discharge going on accompanied by itching, soreness, swelling and can you believe external dryness? What's that all about? I have been to the doctors, had swabs done, and taken endless 'thrush' treatments, but they say I have no infections. I am currently using 'Sylk' almost every time I go to the loo which helped with the external dryness, but the itching and discharge has not changed. My doctor, who is lovely, says she thinks it is hormonal which is probably right as I am 49 and taking tamoxifen! I know I am probably entering menopause and already have occasional night sweats. This does not bother me and I am happy with the changes that are going to occur - part of the joys of womanhood. But this itching and discharge is really getting me down now. I have spent hours looking for natural solutions on the internet and have found this product called 'Balance Activ Vaginal Gel'. I think it is meant for people suffering with Bacterial Vaginosis, but it sounds like it might do what I need it to do. I really can't believe that I don't have some sort of infection but the hospital keep saying I don't. I think the NHS is wonderful but I also think that sometimes things could be missed especially if they're looking for something else!?
Does anyone have any experience of this product? Can I use it safely while taking Tamoxifen? Or has anyone found any other natural solutions?
By the way, passed my first anniversary two weeks ago. All clear!
Hi ladies, update on products. Yes is available on NHS but as pointed out you may need to tell your gp and then insist you get it. Previously I have been given Sylk and on repeat, but I find Yes far better. It's good that we can advise one another because it's just another hurdle we face. Hope everyone doing ok. Lol xxxxxx
At only 42 years old, this came as a shock to me, dryness can be dealt with, but vaginal atrophy? I was triple negative and menopausal due to chemo now. 7 months since last chemo and I am not on any medication. I hope that my periods will start again, anyone out there similar case? I am desperate for some hope. I am using Replens and Yes and they seem to work, but the libido has gone somewhere far away and down there does not feel the same anymore
Thank you to all ladies that are posting about this, it feels reassuring to have advice from your experiences and also not feel alone.
I feel that I have not been given enough information about the likelihood of these SE following chemo, at least I could have been preparing myself emotionally.
Love to all, Flossie xx
Hi Dolphin 1
Thanks for your reply. I to have had a bladder infection, think I must have got carried away with dilators lol. Just hope oncol is happy for me to use vagifem otherwise don't know what else to try. Have used Sylk and Yes with no success. Best wishes Sproodle
I have used Sylk Lubricant (prescribed by my GP) for several years now and find it does the job. Just use as required LOL x
Here's a couple of links from BCC's publications you might find helpful.
Hope you find this helpful.
Hi girls, have you tried yes! It is the only product that ticks the boxes with no added 'nasty bits'. Have a read on their website ans also it can now be prescribed on nhs. I believe there are many ladies on here used it so perhaps ask for their input. What I didn't know was that KY jelly has an additive which mimics hrt and therefore apparently not suitable for bc patients. Since I started taking anestrozol I have experienced more probs with dryness and it's not nice. I use a little lubricant 2wice daily and so much better. Dont knownif we will ever get back to normal, but then what is normal. Sending love and hugs xxxxxxx
No Sproodle things have got worse since stopping rx. But I also have had total hysterectomy plus ovaries removed and prior to bc was on hrt. Had to stop hrt on diagnosis, so very sudden drop in oestrogen levels.
I recently tried reducing vagifem to weekly with a view to having a break, but have had cystitis again and sex more painful so not sure that I want a 3month break. Gp has put it "on repeat" until Dec by which time I will have been using it for a year.
Will let you know what oncol advises. Hope you don't mind me asking but have your symptons got any better since you have stopped taking anything. I was hoping things would improve after I stop the Letrozole even though I am post menopausal.
Thanks Sproodle. I am 6yrs post diagnosis and not taking anything now and discharged from clinic, onc etc. I was also oestrogen positive so will be interested to hear what your oncologist says re safety of Vagifem.
Hi Dolphin 1
I am in the same situation as you. My GP has also told me that Vagifem is considered alright for me to use, which I am surprised at, as my tumour was oestrogen receptive. Have been on Letrozole for nearly 5 years which I know is causing all of the problems. My GP also referred me to a gynae clinic and they said that Vagifem would help the problem and was considered safe. I am going to see my oncol next month and will mention it to her and see what she advises.
Best wishes Sproodle
I'm not sure if this is the right thread to post on. Does anyone have up to date info re Ovestin cream or Vagifem? Saw GP with painful sex, repeat bladder infections, atrophic vaginitis. Have previously tried numerous lubricants including Yes. GP said it was now considered ok to use local hrt following bc, but I can't find any evidence. Also has advice to have 4wks break every 3 months been removed? It's not something that's going to go away for ever!
I havnt been on here for ages (actually came onto the forum to find some info on frozen shoulder!!),
but here's a quick update.
Vielle lubricant seems to be no more (mine must be well out of date!) - shame, as I never found any of the others to be quite like it.
I was lucky to get a very good appointment with gynaecology as a follow up after my ovaries/tubes removal.
I was given the Amielle dilators and a prescripion for Vagifem vaginal pessaries. These are considered safe for me because my cancer was oestrogen negative (I was triple negative). Furthermore, because their effect builds up to 'alter the architecture' of my tender post menopausal vagina, it is not absorbed into the body, and I can continue as long as I wish my architecture to remain altered! I only need to use it once a week now. They are much better to use than the cream and I dont get the abdo pain the following morning that I experienced when I tried the cream.
Intercourse can still feel painful on penetration, but with plenty of lubrication, it feels comfortable (and pleasurable - more to the point!)once inside.
Interested to know where to buy the vitamin e supps. Thnkx xxxxx
Just wondered if your GP prescribed the Vitamin E suppositories as I have followed this thread for sometime now and have never heard of them from other ladies. They sound a lot easier to apply that fiddling around with creams.
I Did go to see a different GP just before xmas and she was happy to refer me to my local gynae clinic. She prescribed me Sylk but find it painful to apply, had thought of going back but thought I might as well wait until I go to the clinic. Appointment letter arrived today for 23rd Feb. God how I hate hospitals lol. Just hope I have an understanding nurse like you had. Will keep you posted.
Best wishes Sproodle - hope you find a good way forward with this.
Thanks for your reply. I too had chemo which as you say probably contributes to the problem. When I went for my last smear test the practice nurse had to get the doctor on duty to do it as I was in so much pain.
They both said how red and sore my inside looked. I will definitely go back to the doctors and ask if I can be referred to a gynae clinic and try and get some replens/sylk prescribed.
Will let you know how I get on.
I am also taking Letrozole and will be until March next year when I will have been taking it for 5 years and my oncologist then recommends a change to Tamoxifen. My vaginal dryness started when I went through chemo, then the Letrozole and having my ovaries out obviously also contributed at a later stage.
The wonderful nurse at the hospital gynae clinic dealt very sensitively with the issue and recognised that there was also vaginismus going on. I was referred there by my GP Practice because the Practice Nurse was unable to take a routine smear.
I am sorry to hear that your GP is not interested in helping with this problem. That sounds very demoralising. Would you feel able to ask for a referral to a gynae clinic, or at the very least, a prescription for Yes/Replens/Sylk?
So glad to hear of your success. I to am suffering from impossible penetrative intercourse due to being post menopausal and have been taking letrozole for over 4 years. Just wondered what meds if any you are on. My GP just is'ent interested when I mentioned it to her just blamed it on the letrozole. Your thread has given me hope though especially as my onc has told me that she wants me to take letrozole for 10 years.
I can relate to everything you say. I was diagnosed with bc in 2010 and have suffered with vaginal soreness
since then due to taking letrozole daily. I too mentioned it to my lady GP but all she said was there is more than one way of skinning a cat and to go to Tesco and buy some lubricant off the shelf. My husband is very patient and understanding but it would be so nice to be able to go back to how we were before the bc. I just wondered how things are going with you and if you can offer any advice please.
Having read this thread I went off to Boots, but neither branch locally stocked it. I've looked on line it it came up with nothing at all. How did others get hold of it please?
Think I mentioned it before, Vielle stimulating gel 'specially formulated to heighten female sexual pleasure' is still the best product I've tried. Tiny bottle, but you only need a small amount. Available from Boots. Unfortunately, the physical changes are permanent, but with practise it is possible to get a reasonable sex life back. Dont give up!
I feel so much less isolated with my 'problem' now that I have seen this board. I was beginning to think that it was just me as when I tried to talk about this subject on my normal forum, it was not broadly discussed and I got the feeling that some people felt uncomfortable with having 'Sex' discussed, especially as we were all going through our chemo and side effects. I was diagnosed in Jan 2013 and have had 4 x AC & 4 x TAX & 4 weeks of rads, plus a therapeutic mastoplexy and am on daily Letrozole.
I have picked up lots of tips from here, especially with regard as to what services and prescriptions should be on offer through my GP and feel a whole lot more positive than I felt before. My GP (female) did not seem that interested and just gave a me a referal letter for a Gynae to be sorted out through my private health insurance. Maybe sexual relations are not that important to my GP, but it certainly is to me. My husband of 24 years and myself are very much still in love with each other and we are not rampant sex addicts, but it is an important and fun part of how we express our love and desire for each other.
Good grief, we all go through so much physically and mentally with the cancer and we cannot have a little bit of comfort and joy because of side effects and we are unable to take anything hormonal that could possibly help us. I am grateful for my life, believe me, but it is crap not to be able to have sexual intercourse. Thank you, all of you, for your openess, views and advice and for liberating me from isolation! Joyce x
As well as Replens, Sylk is also available on prescription - I have both 'on repeat' from my GP.
I sent a query to 'Yes' via their website and have just received a very helpful reply:
... "from March this year our pre-filled water applicators will be available on prescription and from April our 75ml water based lubricant will also be available."
Good news I think.
I wouldn't need to use these products if it weren't for cancer so I have no qualms about asking to have these provided to me on NHS prescription. A shame to think that some people fork out their own cash for such things, especially, as you rightly point out, the dilators are expensive, when they could ask their GP/hospital for a prescription. So many of us take a huge financial hit as a result of cancer treatment's effect on careers/working hours so I try to spread the word about what can be obtained on prescription.
I'm just glad that although cancer has robbed me of some things at least it hasn't succeeded in robbing me of a decent sex-life.
I use 'YES' products and started off with £4.99 sample to see how I liked it, then moved onto the £9.99 version ... quite a good sized tube that will last a while, so at least - if it's not available on the NHS, it won't break the bank. Your dilator is quite an expensive product, so lucky to have that prescribed, and I know Replens can be offered on the NHS too - but not heard about any other lubricating products being available.
It's good you're making headway (excuse the pun!) with the dilator and I hope 'YES' - possibly with sylk on top, (I find YES oil based a bit thick and buttery on its own and prefer to add a small amount of water based lubricant for extra slippiness) will continue to work for you both.
Ultimately, I've managed to make intercourse as comfortable as I think I can now. I don't freeze or panic at the thought of sex anymore, and can even achieve orgasm with the help of a vibrator. But I can't get to want sex before we start anymore, in fact even if I orgasm it feels more like a physical reaction to stimulus rather than a need for relief. Still, it's good enough for 42 years of happy marriage, and I'm alive! And I love the closeness (though I would prefer just a cuddle to be honest).
I do feel for younger women though, especially if they have previously enjoyed a very active sex life with a guy who still needs the same amount of sex, cos it just ain't the same, is it? X
Having suffered with vaginal dryness, impossible penetrative intercourse and agonising smear test, I was referred to an NHS dilator clinic at my local hospital. I had a lot of success with Amiele dilator (which, BTW, was given to me free on the NHS ) It took perserverance over several weeks but sex was possible and pleasurable again - hooray.
I use Replens but avoid the tube with the re-usable nozzle as the contents contain parabens. Also use Sylk.
I was thinking about trying 'Yes' - has anyone managed to get it prescribed on the NHS?
I just checked 'superlube' on google and it came up with grease lubrication for engineering parts!! Perhaps I've missed finding the right one ... if Boots sell it, I guess it must be a different sort!
As for 'YES' products, they come water based or oil based. Actually, I can understand the margarine comparison with the oil based product, It's the texture, yellowy look and feel rather than smell - but if you use it first and then smear the water based version on top (or KY jelly or other waterbased gel) it goes all slippy and slidey and not at all like margarine. However, I personally find just water based on its own dries too quickly so the 'margarine' adds that extra bit of longlife luxury! With younger couples, it may be more difficult with bigger sexual needs and I do appreciate it could be a real literal pain - not easy, X
Superlube? Anyone used this?
My Dr has reccomended this lubricant available from larger Boots. Am having real problems with painful intercourse due to Tamoxifen .5 years on from BC and now been told I have to stay on it for 10 years.
just reading through, how many of you have tried the 'yes' lubricants. ive used it and its fine but my OH says he can smell it and its like margarine ?!? i cant. and he wasnt that close to me to be honest. so is my nose out of order, have any of you noticed this. is he just being an arse? i think he finds it a bit off putting, i probably shouldnt have told him i'd got it.
I've been applying the Yes nightly (after the lashings of aqueous cream on the irradiated left breast and the still numb feet). OH's equipment has gone into retreat from lack of use. By the time we've both checked our bits are still there and showing faint signs of life we've both drifted off into the land of nod.....
Gynae appt last week gave some hope. I said I'd been having problems. Examination was not nearly as sore as my last smear, and he observed 'oestrogen deficiency' in the tissues, and suggested Replens or Sylk. Interestingly, he said gynaecologists were not against oestrogen creams for bc patients even though the breast consultants say no. He said the evidence for topical application was negligible risk. I told him that I'd quickly discontinued it pre bc diagnosis due to abdominal cramps the morning after. He said the body would adjust to it. However, I'm not going to try it again, because as soon as you discontinue you go back into post menopausal atrophy mode, so I feel better to continue with moisturising and hopefully progress to gentle penetrative sex.....
Take care xx
Hiya fecinora - just wondered how you're doing these days? I've enjoyed your posts and see it's been a lot of trial and error - how goes it? I'm doing good enough with a bit of this and a bit of that, love Cherry X
I now have a nice collection of samples and love potions, but nothing is working yet for the 'vaginal atrophy'.
'Yes' is marketed as a 'vaginal moisturiser', so that one well be moved to the bathroom in the hope that I'll remember to use it regularly rather than just pre (attempted) intercourse!
Also, actual use might help restore some elasticity to my old lady 'thin tissues'. Do you think there are any dating websites specialising in less endowed men for us shrivellies? Would it still count as infidelity?
I'm not sure why you'd spend near £50 on amiele dilators; a bit of ingenuity will find a cheaper subsitute I'm sure
I now know I'm BRCA2 positive and facing ovary, etc removal, (I'll probably need an anaesthetic for the gynae examination) and in my research I've found some more things to try:
Vitamin E oil as a moisturiser.
Bupropion, which is actually an anti depressant that works on the dopamine (happy) receptors, more commonly used very safely similar to Champix I think, for smoking cessation. It doesnt cause weight gain, its good for anxiety, AND, seems to help female libido post menopause.
Edit: forget bupropion (aka Zyban), too many contraindications and possible side effects (unlike champix which has superceded it for smoking cessation in UK).
Fantastic thread, thank you all for the advice and being so open in discussing it. Not sure if anyone else has warned that the oil based is not to be used if condoms are used, apparently the oil makes them disintegrate. The confusion around the censored word "beginning in c and ending in t" made me laugh, I thought initially it was the one containing a u but the alternative makes much more sense.