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!
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.
nicky
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.
Rachy xx
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 
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 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
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.
Good luck
Nina
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.
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
xx
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.
Hi there,
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:
- Use lots of lubricant - replens regularly plus something like sylk or the durex lubricants for actual penetration.
- Initially when sex is painful stimulate your partner in other ways so that the duration of penetration is very short until you adapt again.
- Try going on top as you have more control and it’s less painful.
- 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.
Good luck.
Any tips on low libido would be gratefully received.
Rowena
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
xx
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.
Hi all,
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 ?
L.
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.
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?
Hi Naz,
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 ?
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.”
and
“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.
Lulu xx
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.
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.
Anthi x