I’ve searched in vain through the forum for anyone else suffering the same problem as me. I had bc 8 years ago, had chemo, took tamoxifen, had double mastectomy with very successful reconstruction. Had problems with low libido, advised HRT would be ok because of all treatment undertaken, very very minimal risk of bc. So, took advise and HRT. Sex life back to normal, perhaps even better ! Got life back on track.
Well, unfortunately, in April this year did get bc again, easily detected on surface of breast, underwent lumpectomy with radiotherapy. Obviously all health professionals jumping up and down to tell me to stop taking HRT.
So, now with no HRT, unable to take any herbal remedies with estrogen, trying homeopathic remedy offered by homeopathic doctor but not having much success, feel that body has switched off, hormones have packed their bags and gone and will never be able to enjoy sex again.
Is there any hope? Please don’t tell me what my oncologist said and that it’s just my emotions and my body will “settle down” eventually.
Sorry to be such a miseryguts but this is how I feel right now.
L.
No solution for you I’m afarid, but to let you know you’re not alone!! I have zilch libido - not helped by heavy anti depressants as well as Arimidex. When I do - I was going to say rouse myself - maybe not! - decide I’m going to try and be normal with my husband I’ve shrunk internally it seems and it’s very painful. My poor man I think is now so scared of hurting me he’s having erectile problems so we make do with cuddles - which is fine, but sometimes more would be good.
I think this problem is more common than we realise…I too have the same problem…do try to ‘make the effort’…but not always easy, would be interesting to see how other people have dealt/coped with this.
Think its natural for libido to be low for a while. I’m on Tamoxifen and found that I was constantly not feeling right, one week was thinking I has Thrush, the next Cystitis. Some one recommended Replens which is a moisturiser to replace what the lack of estrogen has taken away. Its made a big difference for me, feeling much better in myself and am definately more interested again. You can get it on prescription, give it a try, you’ve got nothing to lose (just inhibitions lol)
Hi
I’m having the opposite problem. My libido has recoverd well but my partner’s is zilch. Slightly at the end of my tether - we talked through my bilat Mx, etc etc, but something’s gone wrong along the way. Sorry this is not meant to hijack this thread. I guess the whole topic of sex post BC is a bit of a pandora’s box whichever way. I really hope things resolve for you…
Cheers
Maggyx
Thanks for responses. Alex, you mentioned Replens, and I do use this and you’re right it does help with dryness but for me not much else unfortunately. And Maggy, lucky you! I have no suggestions for your partner - mine is very understanding and we keep trying but it makes me so sad and angry at the same time. I can’t believe there isn’t something out there to help us with this problem.
Marielou and all, with you on this one. I feel very angry and sad that BC has taken away this wonderful part of our relationship. Like you, I use Replens, lubricants etc and etc, but still so painful. I have been married for 5 years and just typing this is making me angry. Nothing wrong with the libido, I am more than willing, just not able!!! I am on tamox and will swap over to Arimidex in the New Year. I have heard/read somewhere about the use of dialators and was going to discuss with my GP. I am prepared to try anything to overcome this and get back on track. If only people on the outside realised how involved BC is and th effects of all the drugs. Like you, there must be something that can help??? (PLEASE??)
Hi Jayney, it is depressing isn’t it. It’s bad enough having cancer thrown at you but when you come through the other end there’s all this other additional damage it’s hard to take. I don’t think the problem of sex after all the treatment is addressed by any of the health professionals, you really have to push for advice and help. I refuse to believe there isn’t an answer to all our different problems. Good luck with your dialotors, I’m not sure what they are, but hey, anything’s worth a try !
No answers I’m afraid but thank you very much for being brave enough to start this thread. It’s clearly needed and will hopefully result in some good discussion and useful suggestions.
I was post menopausal by the time I finished my treatment and found the loss of my sex life the most distressing part of all this (only 49, married 25 years next March). I just thank my lucky stars that my OH is so understanding, he is a man with the patience of a saint. I do get a spark every so often, but have seen 3 gynaecologists who were all women, but less than helpful. My OH says “look you’ve been through a lot and we’re not 25 any more” but I know it’s every bit as distressing for him to be going without intimacy. Thankfully we are very close in other ways.
The first gynaecologist said “have you tried something visual?” which I took to mean porn - well not thanks, I’d prefer to pass on that.
The second one and her registrar looked at me with amazement and they both went “what do you expect, you are post menopausal now, it’s perfectly natural to have no libido”. Doh, you don’t say eh? A bit of help and advice would have been appreciated from all. It’s like nobody cares about this aspect.
Hi all thank you so much for this thread, I thought it was just me. I had mx last October and after everything that has happened to me in the past year do not feel anything like the person I was last year. My poor OH has been a saint, he is patient and under standing and really supportive it’s me thats the problem. I have not had my recon yet and think thats part of the problem. Please let me know if anything works (have even tried alcohol but just fell asleep haha)
have the ladies with vaginal atrophy tried vagifem… it is hormonal but its given as a pessary so isnt absorbed sytemically only to the surrounding tissue… there is no evidence to show an increased risk of BC and most good family planning/menopausal symptoms doctors and nurses would still prescribe this for breast cancer patients.
i would recommend going to speak to a specialist in menopausal problems often run by family planning and sexual health clinics as they are very aware of the limited otptions and problems associated with menopasual symptoms.
also have a look at the menopause matters website which has some useful tips and hints and a friendly forum with people who have been in a similar situation and maybe able to advise you on what worked best for them.
my libido is a bit non-existent since chemo and just 4 weeks post hysterectomy so sex is the last thing on my mind at the mo.
I was on Vagifem for about 9 months by a menopause expert and it really helped. She said the dose was so low it didn’t matter about having BC.
Unfortunately I was advised to stop it after having a post menopausal bleed as the Consultant Gynaecologist I saw thought the Vagifem had caused it. I had a precancerous change to my cervix which needed laser treatment in my late 20s, so I didn’t want to take any chances.
You may find it useful to have a look at the BCC booklet on menapausal symptoms. If you would like to order a copy or read this on line just follow this link:-
I have found a lot of information relating to menopausal symptoms and BC, but there is not very much for women like myself who find themselves post menopausal in their 40s.
I didn’t have anything like hot flushes or night sweats - I just had a period the week before I started chemo, then that was it. It was like the menopause just happened overnight, everything shut down and that was it.
I’m sorry to hear BC is back, but I hope the treatment is working. Like you, I was prescribed Replens but a BC friend thought even a tin of Swarfega woudn’t salve the pain on penetration so something more is often required. I found this to be Ovestin, a hormonal cream available on prescription. As it’s topical I hope the risk is minimal but that’s no help to you if they won’t let you have anything hormonal. I do think ‘marriage maintenance’ is almost impossible without sex and hey, it’s fun for us too so I would insist they address the problem!
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
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.
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.
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.