My wife is on Tamoxifen, and now I'm on escitalopram (an antidepressant). One of its side effects is elimination of a man's libido. Now neither of us has any interest in sex. Problem solved!
I am one of the THOUSANDS, I was diagnosed with bc in 2010 and after having chemo and prescribed letrozole I have been unable to have penetrative intercourse since then. When I mentioned it to my oncologist I just got the feeling I should be grateful to be here. Went to see my GP, she blamed the letrozole and did'ent offer any help at all, which like you said is very demoralising. When I mentioned it to my breast care nurse, she just said have a romantic night, light some candles and open a bottle of wine, If only it was as easy as that. I had no idea what to do until I registered on the Breast Cancer Care Forum where I at last got some information to help me. I went back to see another GP and asked her to refer me to a gynae clinic. I saw a lovely consultant, who wrote to my GP saying I needed dilators, Replens and sylk on prescription. At last I felt I was getting somewhere. Looking back over nearly 5 years I cannot believe the professional people you meet give you no advise or help. It is early days but I do feel with perseverence I will hopefully have a half decent sex life.
Welcome to the forums, I’m so pleased that you are finding them helpful.
Whilst waiting for replies to your post maybe you would like to give our free helpline a call where the staff can offer practical information as well as emotional support. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
When I went to the local Family Planning Clinic to get my Mirena coil removed because of my hormone +ve BC the very nice doctor there said she was so frustrated that many women with BC were not being offered good advice to help with their sex life. She said there are all sorts of things available but most women aren't made aware of them. So perhaps contact your FPC and see if they are more switched on than your GP - mine certainly was.
dear all, The one thing I have found helpful is Yes lubricant (google Yes yes yes). The fact that it is organic and soil association approved made me laugh,but that does mean it doesn't have anything scary in it and it is very like your own natural lubrication. I came across your posts trying to find some information about atrophic vaginitis, which apparently is not uncommon post-chemo. Especially, it seems, after you have been plunged into an accelerated and premature menopause. It goes a whole lot further than vaginal dryness, tightness, and hot flushes that always get the first mentions, because it affects our relationships, our sexuality and confidence. We need a little more help on this one, because we are not all brave enough to speak absolutely candidly about it. We need clear guidelines for example on which hormone replacement creams and pessaries we can use with confidence, which are least messy, most comfortable to use etc. We need to know because it's not necessarily within our GP's comfort zone, and we often need to lead them by the hand if they are to help us out here. Thanks for being so frank,it's good to know that I'm not really being neurotic about this.
all love Linden
Jenny, if it is any consolation, I have also suffered with the dryness and itchiness ..horrid horrid!
Like you, I have used thrush remedies, just in case it is that...but I don't think it is...
Be nice to yourself, it is still early days for you, having finished chemo only 4 weeks ago..
thank you all fo rbeing so honest. Part of me feels that by going to the GP seems so trivial, but the dryness, itching is really getting me down, I have even been putting thrush treatment on my bits, incase, even thoughI know that it isn't, although it does offer some relief.
I finished chemo almost 4 weeks ago, so such be delighted still got 3 lots of operations and Rads to go, but they don't really bother me much.
My husband is wonderful,and as I have been so sick dueing chemo, sex has never been an issue.
now I feel as though things ought to get back to the way they were, but I am realising that life will never be the same again!
reading your posts has given me the confidence to go and see my Gp, who is a lovely lady.
I don't think that it helps that I feel quite ugly, put on 2 stone, not a good look, so with extra lumpy bits is not a good look, especialy as mu hubbie is an excercise freak... writting that actually made me laugh,so thank you all very much.
thank you all, love Jenny xx
Agree with you Beth..it is nothing like it was before..
I was thinking today, the active treatment may be over, but boy it does not end there!
I am also in the same boat...thrush, cystitis, pain and wishing I could read a book instead of knowing I am going to have to go through the rigmarole of having sex with my (trying to be) patient hubby. I even get arsey with him if I know he wants sex just to put him off...I wish it was like before but it's just not, sadly.
Yes I can empathise with you all...
My OH has not even seem my reconstucted breast properly, and now I have had the other one done, i am in a bit of pain once again.
Not helped by my periods all over the show...had the last one two weeks ago, and now it feels like its on its way again..totally fed up! 😞
just wanted to be part of this thread as I am getting soooo frustrated with the maddening & depressing after effects of having gone through BC. I was diagnosed 2 years ago - had WLE, FEC x 6, Radio & herceptin for 1 year. Was Oest & Prog pos so they also tried me on Zoladex but that made the pain during intercourse unbearable so now am just on tamoxifen. I haven't had a period for months (not that I miss them)& have been getting hot flushes. My memory's rubbish & my patience threshold is very low!! (I do have 2 small children though!). Seem to be getting thrush regularly too. All down to Tamoxifen!! I'm 42 years old but feel 100! I had low libido before BC but now it's much worse as I dread intercourse as it's so uncomfortable/painful. Trouble is we don't get intimate in that way very often (entirely down to me) so the longer we leave it the worse is for me (feels too tight). I've started using Replens weekly (get on prescription) and lubricant to help during intercourse & it does help a little but think unless i/c is regular it's never going to get better. Hubbie very understanding but I know he's extremely frustrated. Feels like BC is a life sentance!
I really do think that we underestimate the effect of breast cancer on all our family members. I have had a sit down chat with my husband and told him exactly how I feel. I listened to how he feels. He said he doesnt know how to approach me now as he doesnt want to hurt me. I have attended a intimacy and relationships course run by breast cancer care, it was really helpful. It made me think of his point of view as well as my own. I hope your husband gets over his problem. If you wish to personal message me, you are more than welcome.
Love Liz xx
SOrry to hear you are having a rotten time. I have been so lucky not to have any loss in libido or problms with intercourse, but even so my husband seems to have completely lost interest in the intimate part of our marriage, even though he has been wonderfully supportive in every other way. I think that he just sees me as a 'sick' person now, even though I am very well. I am very aware that he has not touched my reconstructed breast yet, and it is over 4 months since surgery.
It is very difficult.
Perhaps we underestimate the impact that our BC has on our partners.
I do hope things improve for you.
It is so good to be able to come onto this site and find people who understand. I have tried talking to my husband he says he understands. I have told him that I still need the cuddles and the kisses and the closeness we once had. Classic is tonight he went to bed yet again without giving me kiss goodnight. Just pops his head around the lounge door and is gone, last night i went to bed at the same time - he just turns his back on me and goes straight to sleep. He tells me he doesnt want the marriage to end but i dont know how much more i can tolerate.
Sorry to drone on about my problems.
Definately have a huge problem with this. Hair loss was horrid, double mastectomy was horrid, and tamoxifen is the icing on the cake. Will never feel the same.
Liz, have a hug from me!
I hate to think of you sad and upset ( i know i do not know you).
Your husband really does need to get his act together and support you in all of this, as it is a horrid thing for a woman to have to go through.
Maybe have a good chat and explan to him that you are struggling a bit and you need his support..starting with cuddles and kisses?
I do know how you feel, as i feel totally unnatractive at the moment, but that is largely to do with my hair.
I hope things get better for you soon.
Just wanted to leave a message for Liz - don't keep this to yourself, it is not trivial - it's a huge issue - my complete lack of desire is making me utterly miserable and frightened to even try and have sex with my husband because each time we try and nothing happens I get so angry and end up in tears.
I am trying a homeopathic remedy - we have a homeopathic hospital near us and a very patient and understanding homeopathic doctor and I've been taking a remedy for a couple of months now - it's not a quick fix - I know it might not work but for the moment there's nothing else so I have nothing to loose. I reckon if nothing's happening by Xmas then I try something else.
I've had bc twice already, I'm reluctant to try anything that has even the slightest link with cancer but am going to my GP to sound her out on things I have read about here.
Go and explain how things are for you to someone, your breast cancer nurse, your GP, oncologist and maybe somebody will offer some suggestions. From looking at this thread there seem to be some understanding doctors out there - yours might be one of them!
Hi everyone, I've just joined the forum after stumbling onto this thread. I can empathise with so much of what you are all saying. I was diagnosed at 31, and have since had 1 year of chemo/surgery/rads, followed by 3.5 yrs tamoxifen with zoladex for the first 2.
The worst part of this now is the effect it's having on my marriage. It was my anniversary recently and my husband was really looking forward to spending some time with his wife, except for me it's too uncomfortable/painful. I know I am failing him as a wife but every time we try we both end up getting really upset because it doesn't really work. This is really messing with my husband's head as well as mine and I have to do something to fix it. I married him because I thought I could make him happy, but now...
Things have got so bad that I had more or less decided to quit the Tamoxifen. Then I did some research into my 'survival stats' and found out that due to my stage at diagnosis etc. my stats are nowhere near as good as I thought. Not only that, from what I can gather, half of the survival rate seems to be from the Tamoxifen. So quitting that after everything seems to be out of the question. My husband is also totally against me quitting the meds.
So I've been desperately trying to find a way to save my marriage, Then today I found an article talking about a trial on women in our situation with atrophy treated by pessaries containing hyaluronic acid, vitamin a, vitamin e, and vitamin c. Nearly all of them reported huge improvements regarding dryness/itching/painful intercourse. While it's difficult to know how much faith to put into some of these trials, surely this has to be worth a try?
I've spent the rest of the weekend scouring the net for a pessary for sale in this country with these ingredients but I can't find one anywhere. I have found one called 'Repadina vaginal ovules' which does contain hyaluronic acid but unfortunately it also contains parabens which I am avoiding due to the link with BC. I did manage to find a different one called Premeno Duo without the dreaded nasties, but as far as I can see it doesn't retail in the U.K. Apart from that the closest I've found in terms of ingredients is not a pessary but a gel (which contains everything but no idea of the dosage), so I don't know this could be managed long term.
I have thought about just buying vitamin a, c, e capsules and tracking down a hyaluronic acid capsule as well to see if that would work, but I don't know if that's safe?
Anyway, this research has to be good news. If anyone has found or even tried anything similar could you please post the name and how you got on?
Love to all xo
Oh Liz I hope you get back on track. Its all very difficult and at times its all too much to bear. Now having to manage the fallout of post treatment. I saw the GP today and she asked me to contact my BCN re dilators. I spoke to her and she is going to call me back on Mon - watch this space. GP was fab and promised faithfully that "we will get down there sorted out". I am nearly a year post chemo and it doesn't seem to be getting much better, the pain is excruciating! Not sure I like the idea of dilators and have to be referred, but willing to try antyhing. Using Replens and KY but not Sylk so will try that. Thanks for the positive posts which are encouraging that things may get better! BC will not take away my sex life!!!!
I didn't want to read and not say anything, as I can feel your pain coming off the page. Just want to send you a hug and hope that he 'gets over' his problems and comes back to being a reasonable human being.
None of us asked for this to happen, and everyone affected by it (partners, family, friends) needs to pull together to find a way through it. I'm so sorry your H isn't doing that at the mo.
Take care of yourself
Was quite relieved to see other people are suffering from this problem too and it was just not me. Unfortunately, my husband is not the understanding type and it is now really affecting our marriage. We are drifting further and further apart. He no longer cuddles or kisses me, because .... and I really dont know why he doesnt, he tells me he still finds me attractive, but I cant switch my sex drive on like a light if he is being aloof.
I am finding this very hard to write as the tears are streaming down my face. I havent spoken to anyone about it as it just seemed trivial compared to everything else we have been through.
Hello everybody. I've just seen this thread, having come back on the forum after a busy summer.
After chemo three years ago I had a major problem with intercourse - no loss of libido - but penetration was excruciating.
I used Replens and Sylk. At that time you could get a free sample of Sylk via the internet and then I bought a bottle which lasted for ages as you only need a drop. The combination of Replens, Sylk and a partner who was extremely patient and understanding worked. We used the Sylk each time we had intercourse, took it very gently and managed a bit more each time until things were back to normal.
Good luck everyone.
Thanks Lulu. Think I might go and see my GP about this. Must admit my confidence in medical profession has plummeted since my 2nd diagnosis and treatment received by oncology dept, but this GP has always been supportive in past.
Marielou there is no evidence to suggest that vagifem causes cancer or causes recurrence of cancer if your on tamoxifen....
heres a couple of journal articles published this year so its very up to date evidence.
this is a quote from the American Journal of medicine
Caring for the Breast Cancer Survivor: A Guide for Primary Care Physicians from June 2010
"Concern over the systemic absorption and the effect this might have on breast cancer recurrence has been raised but remains controversial and unproven"
and this is from a review of systemic effects of topical oestrogens published here....
Female Pelvic Medicine & Reconstructive Surgery
Issue: Volume 16(3), May/June 2010, pp 188-195
"Vaginal estrogen use may be ideal for the treatment of menopausal symptoms in women following a diagnosis of breast cancer. As noted earlier, most forms of vaginal estrogen, with the exception of high dose vaginal cream and Femring lead to serum estradiol levels that are within the menopausal range."
"If vaginal estradiol less than 25 µg twice weekly or vaginal estriol less than 0.5 mg twice weekly is administered, there is no associated increase in serum estrogen"
however it states its not recommended for use with women who are on aromatase inhibitors.....
"The authors concluded that Vagifem may counteract estrogen suppression caused by aromatase inhibitors and should not be used with these agents"
so if your on tamox or no hormonal treatment you can use vagifem safely.
if you doctor says no maybe you need to point him in the direction of these articles for info.
You'll probably find quite a few ladies on this thread have tried Sylk or Replens - they are lubricants and they obviously help with dryness, even if only temporarily. You can buy Replens in Boots, I think, from reading this thread, you probably have to get Sylk on prescription.
I've written and rewritten several comments about how you might help yourself feel good again. Then I remembered how I felt when I was having chemo and just had baby fuzz for hair and uneven, scarred boobs and my suggestions all sounded so useless and none of them would have worked for me so .......... Maybe somebody else can come up with some useful suggestions ?
Has anyone tried Sylk or Replens at all?
I am now having trouble in that area, after months and months of abstinence !
One of my main problems is, that i do not feel attractive with one nippleless reconstructed breast, and the other that nees uplifting and sorting, plus having short stupid curly hair!
Any ideas how to feel good again?
Vagifem is a really low dose of oestrogen, about a tenth of what you get with HRT and you have to use the pessaries twice a week. I found it of great help when I was on it, but I had to stop using it after having 2 post menopausal bleeds. It's supposed to be a very low risk, but in my case I was taken off it because I'd had laser surgery for a precancer to my cervix about 22 years ago. When I was on it the oncologists used to advise me to stop and start it - come off it for 4 - 6 weeks then start again. I was only actually using it once a week when the bleed happened.
Know what you mean about taking iup bowls, I'm only 49 and often think "was that it" over the loss of my sex life. Not good as I'm celebrating my silver wedding next March and I turn 50 6 weeks later.
My own opinion is that loss of libido in women is not taken seriously enough.
I followed up posting from Sam from BCC to look at leaflet produced by BCC - some might find it helpful - 7 pages on advice on hot flushes - but little about problems with sex drive other than recommendation to go see your GP.
However, I found the other leaflet mentioned here(Sexuality, intimacy and breast cancer (BCC110) ) a bit more useful and informative so it is worth reading.
Still I don't hold out any great hopes of finding a solution to my own problem of my body being completely unresponsive to sex.
I'm a fit, attractive, "young" 55 year old, fantastic reconstruction has given me a body I'm pretty happy with. Do me and my partner just accept there's no sex any more and take up bowls instead ? I hadn't heard of Vagifem before - but I suppose I'd be dicing with getting cancer for a third time if I tried this - even if GP would prescribe it. Is it linked to breast cancer risk ?
Even with the best will in the world, there is bound to be psychological reasons as well as physical for this. I certainly feel less attractive - not helped by starting to look like my 69 year old Auntie now that I have short, curly hair - which in turn switches my libido off (am I alone in that my own perception of attractiveness is a much bigger factor in my libido than the attractiveness of my partner?).
Initially after chemo, I was very dry and sex was very painful. As my hair came back, it got easier. I still need him to lead it - I can go without for a lot longer, although, not totally - but when we do, it is now 'back to normal' in terms of lubrication. It does take me a bit more to get as much enjoyment from it as he does, but that is also partly because we are using withdrawal method contraception so we can't be abandoned! Sorry, TMI!!!! lol
FYI, I am 37, on Tamoxifen & Herceptin, had FEC-T and rads.
I too can really identify with all the above posts and agree with the advice above. Once my periods stopped half way through chemo had the same problems of pain and dryness. Tried replens then sylk and neither helped. I asked my oncologist about using oestrogen pessaries or similar and it was a definite no (I am 95% ER +). It seems there are very differing opinions from oncologists looking at this forum which is frustrating.
Anyway on a positive note my onc just told me to use lots of ky jelly and see how it goes and amazingly things are much improved, no pain. To be honest I think it was the chemo in my system causing the problem, not tamoxifen which I'm on now. Its now 5 months since my last chemo and dont need to use the ky any more.
So keep hopefull
I can identify with most of the above posts! I still have a very low libido and have no suggestions or answers.
But I did manage to overcome pain and tightness on penetration.
I read a lot on the forums and I found a combination of things helped:
1. Use lots of lubricant - replens regularly plus something like sylk or the durex lubricants for actual penetration.
2. Initially when sex is painful stimulate your partner in other ways so that the duration of penetration is very short until you adapt again.
3. Try going on top as you have more control and it's less painful.
4. Remember physically the vagina is designed to stretch and it will do again even if it feels impossible now.
I didn't try dilators but I think they would work well too.
Any tips on low libido would be gratefully received.
I think one of the problems with my surgery is that 2 of the partners are husband and wife (she is the only female GP there). They are both very brusque and have the same attitude to things ("just get on with it"), no sympathy at all. Plus they are known for backing each other up. Another GP told me I had an insect bite and gave me anti histamine - it was actually a huge chemo burn requiring hospitalisation for a week. The fourth never stops looking at his computer and never makes eye contact. A fifth retired, he was the first GP I saw after my diagnosis. He looked at me and said "whoa, stop there, I don't know anything about breast cancer". My OH just sat there open mouthed as he couldn't believe it. However, on the plus side I have to say I was referred immediately when I let the woman GP see my lump, also when I had a post meno bleed last year. I just feel a bit more compassion when dealing with cancer patients would be welcome (everyone says the same about them).
When I lived in London I had a lovely GP, an Indian who was a real gentleman and very dedicated to his patients. What I would give to have someone like him at my current surgery. He was just so kind and helpful.
like Lulu, I am a thirty something (38) So it's the chemo, not the tamox??? Have booked to see GP next week to see if she can give me any advice, she has been fab so far, so will keep you posted. As if going through all this BC stuff is not bad enough,having the manage the fallout from treatment is really difficult. The thought of going through the next however many years like this is just awful. Thankfully my OH is fab and understanding, but I feel angry that BC has taken away an important part of our relationship.
Take care all
Glad it's not just me! Had BC in 2001 aged 42, had surgery, chemo, rads, tamoxifen and arimidex. After the first chemo had an instant menopause and have felt nothing sexually since.......bit unfair to happen so early, I really miss intimacy.
Try asking your BCN re counselling - mine referred me and while it didn't work out for me for various reasons, at least I got some.
cherub maybe seeing a different GP at the practice would be useful... if they have any locums they are sometimes quite good if they are new and full of knowledge from recent studying... sometimes a new set of eyes is good.
think that anybody needing counselling should be able to get the same opportunities for counselling very unfair they are only for certain groups 😞
If I thought I could change surgeries I would, but getting into another here is not easy. Some of the other practices are worse, and at least mine has access to all sorts of stuff. I guess it's better the devil you know. When I moved back here nearly 7 years ago this was the premier surgery to get into in this area, sadly not any longer. They spend too much time offering things like psychotherapy for people with addiction problems, yet they won't get counselling for cancer patients. Maybe it's because addictions generate more money?
cherub i think you need to demand your gp write you a prescription its a side effect of cancer treatment and thats what they introduced the free prescriptions for in england 😞
I use sylk and get this on prescription. It does help but the lubrication doesn't last nearly long enough!! I do get upset about lack of libido as menopausal before treatment despite being in my thirties. Hormone drugs made it much worse. I am not ion any hormone drugs now but for other reasons. Good job i have an understanding partner but I do miss my strong libido and lack of dryness. I am on antidepressants which I know can also affect libido. I have become very creative with my partner since bc.
completely identify with so much on this thread. Sex is just too painful, and my onc is very reluctant to prescribe oestragen cream as I have secondaries. Another thing on the long list of things that this blxxdy disease takes from us.
Cherub, here's your sister! It's no joke is it? Supposed to be in our prime and they expect us to hang up our thongs and get out our knitting (metaphorically speaking, actually I hate thongs)- I think you need to change your doctor or tell this one to cop on!
I use both Replens and Sylk which help to a certain extent, but it's still not that great. The GP I saw for post menopausal bleeding said she wouldn't bother with giving me a prescription for either as she knew I was already buying them - never mind the fact Replens costs about 12 quid a flaming tube and I have ended up like this as a result of having BC! The attitude at my surgery is very much of the "you've had BC, so what, just get on with it now" variety.
30something i was on tamoxifen for 3 years before i got cancer again and didnt have any libido or sex problems.... quite the opposite as i had a very active sex life... its really the chemo and hysterectomy thats done away with it.... hope when the time comes you dont have any problems.
laurasue why not speak to a gynaecologist and see if they are happy for you restart vagifem... it will just have been a coincidence that you were diagnosed 6 months after using it.... most cancers have been there for years before they are diagnosed so would have been there long before the vagifem.
Hello ladies, I have just seen my GP today about this very problem. I had already undergone the menopause when I got bc but had still enjoyed a good sexual relationship with my OH prior to this. Things are very different now no libido, no sensation and a lot of pain on penetration. Replens made me very itchy and sore so now I have a prescription for Sylk, that might help but I'm not holding my breath. I have used Vagifem in the past prior to smears but was diagnosed with bc only 6months later and I connect the two things though probably not related at all.
My GP didn't offer much help really. Seems such a shame that after the horror of cancer we can no longer enjoy this pleasurable aspect of our bodies. OH very understanding but we do miss the bonding/closeness that sex used to bring.
I have been reading this thread with interest (and a little bit of shock). I have been on tamoxifen since May and although I was single when I was diagnosed I am now dating a new man. In a way I am relieved that my lack of desire, so to speak is probably down to the drugs as much as my body worries after my lumpectomy. I hadn't thought of this as I didn't know much about menopause apart from the hot flushes. I am worried about sex when the time comes but at least I'll know that I probably will need some help with lubrication so that's not a surprise for us as well as everything else I'll be feeling. Thanks everyone for sharing x