Almost a year after a mastectomy, raiotherapy and anastrozole, I feel really well except for a growing problem with sex. Without oestrogen, my libido has greatly diminished but, at 65, I can look back on 42 years of an intimate marriage, and we still make love. But increasingly I’m finding this painful … in fact sometimes it feels almost damaging! We use liberal ampounts of KY jelly, but I’ve seen others post on ‘sylk’?
I’m mindful it needs to be oestrogen free so would value any advice regarding this … in fact any advice altogether would be welcome . Are some lubricants better than others? I accept that for both my husband and me, we’ll perhaps be slowing down as time goes by, but it also matters that I’m happy to respond to lovemaking, at least with comfort if not wild passion!
Thanks, Cherry
Dear cherry
While you are waiting for other members to repond to your post I thought you might find our booklet on Sexuality and Intimacy useful. here is the link:
www2.breastcancercare.org.uk/sites/default/files/bcc110_sexuality_booklet_web_3.pdf
You could also talk things over with one of our Helpliners. The helpline is open from 9-5 on weekdays and 10-2 on Saturdays. The number is 0808 800 6000
Very best wishes
Janet
BCC Moderator
Hi Cherry, look on the yesyesyes.org website, their products are brilliant, have used them for years since natural menopause over 10 years ago. If “tightness” is an issue dilators may help PM me if you want more info. Best wishes Pat x
Hi Cherry…I know exactly how you feel. I have had this problem since changing from tamoxifen to letrozole and am now on examestane. I tried replens,sylk you name it andnothing helped. Ended up being referred to a gynae nurse at Christies. Amongst other things she said if you are post menopausal need to use oil based products. Things like replens, sylk and ky jelly are all water based. Told me to use olive oil (bought from chemist olive oil bp ) and also use aqueous cream in the bath/shower to wash those parts rather than soaps etc. Have followed her advice religiously and my god what a difference! Its not as before but so much better! Feel free to pm me.
Janey x
Cherry
I have same problem rearing its ugly head 6 years after treatment and I am 62 now. After using several lubricants I have found Replens the best and, your GP can prescribe it for you. You have to use several times in a week at first but can then ease off to maybe just once a week. Obviously the best is an oestrogen containing one - there are some extremely low dose ones on prescription - and risk of further cancer is extremely low but obviously this you should discuss with your oncologist. i have made the choice of using Ovestin 1mg cream as my relationship of over 17 years is suffering.
Good luck!
Sylvia
Thank all of you for a most interesting thread! The advice about washing with acqueous cream is particularly valuable for me as I’ve been having urethritis type symptoms, probably SE’s of chemo, but probably exacerbated by the dye they gave me for my SNB 2 weeks ago. When I was in hospital I noticed a poster on the wall of one of the ward utility rooms about E45. Apparently they have discovered that E45 can actually thin skin tissue so they recommend ZeroAQS. ( zeroderma.com/zeroAQS.html) The health service buys it in packs called “Care Acqueous Cream”, and it is available on prescription from your GP. Hope this helps.
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.
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:smileyvery-happy: ) It took perserverance over several weeks but sex was possible and pleasurable again - hooray. :smileytongue:
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?
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 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
This has been a very reassuring thread to read. Thought it may be the tablets I am on! Taking Anatrozol apart from hot flushes in the middle of the night which are a pain, I have also noticed a distict loss of interest in sex although I feel loving towards my husband of 29 years. Currently using any lubricant we have had previously from Ann Summers, but would like to replace with cheaper and better stimulating product to get things working quicker! Find I can’t get anywhere near orgasm without my trusty little lipstick sized vibrator (was devastated when I thought I had put it through a wash cycle- but still works!) so would recommend one to every women of any age!
Wow, why didn’t I find this site years ago.post bc 7years, r. mastectomy, with no reconstruction(not offered at time of surgery).
5years, tamoxifen followed by letrozole, which ceases in few months time.
Was not aware or informed that I would experience , thinning of skin in &around vagina , due to meds.
GP, referred me to gynecology, recently, following prescription of replens. No mention by gynecologist, of any solution or support of problem or if there were any effects such as lovemaking, although, they were aware of bleeding on touch or examination.
Also, this maybe for another part of this site, but as I have a large breast, it seems impossible to find the correct size prosthesis, bra , swimwear, that fits in the prosthesis pockets , witch I find too flimsy to support the prosthesis resulting in the prosthesis protruding out of the pocket & attaching direct to the skin , causing soreness &discomfort.
I have been offered, a reduction & reconstruction, but find this not acceptable to me personally. Has anyone with large breasts, undertaken a reduction on the remaining breast and would be willing to share their experience please
Many thanks
Hi, just wanted to throw Vitamin E suppositories into the ring, as it were. You insert them into the vagina, and let them do their stuff. They are oestrogen free, and I can honestly say they have helped. My OH says he can feel a difference too. Intercourse is much more comfortable now.
Hope this helps.
Lady Gray
Interested to know where to buy the vitamin e supps. Thnkx xxxxx
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!
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
Interesting some of you have had Sylk from GP …had my delivery of 3 bottles today which I bought online …Other than my Letrozole I don’t have any other prescriptions so might ask about Sylk …and here in Wales we don’t pay for prescriptions …so sex on the State ! Wey Hey!
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 :womansad:
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 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