Just thought I'd mention that BCC have a booklet called 'Sexuality, initmacy and breast cancer' whcih you might find useful to read.
It can be found by going to the following this link:-
I hope you find this helpful.
Sam (BCC Facilitator)
I think all the advice here is brilliant for a very common problem and I've learned something new. Thanks.
I can add that I went to see gyno as I was alarmed at bleeding after sex and he gave me a set of "dilators" (look like pointy non-vibrating vibrators) in various sizes which you use regularly for a few minutes to keep the skin in this delicate area stretchy. He said, if you experience trauma to the skin, it will continually become re-damaged unless you can stretch it. I've just had to include stretching into foreplay (and its a great reason to get more of that!!).
I guess the saying "if you dont use it, you lose it" applies to here.
The lengths we have to go to, but I would be devastated to not have sex any more. Hope this helps.
Change your GP! Her response is not proffesional. GPs often have their specialisms and many are interested in womens' health. See who is in your practice or go elsewhere, if you can.
I have just seen this months online conferance at Breastcancer.org which deals with many of the problems in this thread. You can read the transcript.
Having said that some of the replies din not give much help, but that might just be my thinking.
No, I didn't see the prog, mounties. Unfortunately.
Good on you for sending an e-mail - hope you get a response.
I think this thread has been a really helpful discussion of a problem that happens no doubt to all of us. Its good that lots of women who are too shy to post can read about how we feel and how we cope, and what can be done to help. It has really reflected all the different attitudes, from 'ultra-cautious' to 'take a chance', and it may help partners to see how it is for everybody, and how we do understand that it is difficult for them too. My OH and I are getting on, and have had out share of passionate moments in the many years we've been together, but neither of us wanted this to be the end of our love-life. I know lubricants help, but they dont replace the feelings for us women.
Best wishes and good luck to all of you, whether you go down the 'vagifem' route or keep going with the Sylk. Each to her own!
love Zoe 🙂
Did anyone else see "This Morning" today? They were discussing help for women with loss of libido and the Gp Chris Steele is investigating cures and solutions for this problem.
I have actually emailed the show to ask if he can also look at solutions for women such as us who can't take the easy option of going on hrt, will let you know if i get a reply.
I think this side effect is greatly under estimated by the medical profession which is terrible as it is so important to be recognised and treated.
Thanks for all the comments and information, once you start, you realise that many of us are suffering this horrible side effect of our treatment.
I have been using the Vagifem now for a few weeks, and I must say, the difference is wonderful.
I still need a little help with the lubrication side of things, and I am going to try the Sylk, but the pain has gone completely, and I am really happy to be able to be intimate again at last.
I agree that you recieve no information about how the treatment is going to effect your sex life and libido, and so it comes as a big shock.
Best wishes to everyone who is still struggling.
I'm really pleased to hear that Sylk is working so well for some of us (I've got some, too).
Am I the only one who finds it incredible that there are GPs who have never heard of it?
Do they live in caves on Mars?
This doesn't fill me with confidence, frankly. What else might they never have heard of that might be even more important?
I have tried Sylk for the first time yesterday and I found it really good. My partner and I have been intimate for the first time in months due to this.
Dont know if Deboraw still looking at the comments? I had exactly the same problems.....husband totally understanding and very sorry for me. but I didnt want a sex free rest of my life! Tried everything, but finally vagifem pessaries made all the difference. My tumour was strongly oestrogen positive, but onc and nurse both ssaid such tiny amounts applied locally are minimal risk.
So far so good, and I can actually enjoy making love after 2 years.
Good luck all of you x
I now have my prescription for sylk but pharmacy have to order it so I hope I can get it tomorrow. My gp was fine about it and had never heard about it and was interested. here goes
I had the same response from my GP and I have struggled for 2 years until i found a leaflet in the surgery for a product called SYLK. It is a vegetable based lubricant with no oestrogen and it is wonderful...!!!! I too had tried everything and was becoming deperate and very sad....It has changed our lives..I cannot believe that my GP did not know about it...try it, I hope it helps...
Yes, I use it and buy it by mail order. I also use Replens once or twice a week. I buy it all myself - the duty of care from my GPs fell down at the end of my treatment and I cannot bring myself to go and ask for it on prescription as they dismissed a lot of emotional issues to do with the menopause; they were also very dismissive of the menopause specialist and oncologists recommending that I went on topical oestrogen. The letters sent to my GP about this were given to the receptionists for filing marked "no further action", along with the stuff about me needing counselling. I have not seen a GP since last summer and dread going back.
I agree with the above comments its just the pleasure aspect i miss from the sex, feels very cold and clinical, Went to see therapist the other day. It was better then i expected and it is'nt just to talk about sex. Husband would never accept a sexless marriage as he still "has needs" but at least as you say if you can do things to make the man satisfied quickly it helps the problem with the nagging if you do nothing. In an ideal world i would just rather never have sex again and go to bed with a book and mug of horlicks, is that selfish?
I agree with the on top suggestion - this has always been better for me as I discovered about 15 years ago I have a tilted cervix (affects about 13% of women according to the gynaecologist I saw). The Consultant I saw back then said this position would be more comfortable for me and on the odd occasion recently when I have been able to have sex it has been fine then. I think it is partly down to control as you can choose the speed etc.
Just a quick addition to all the useful info above.
I have found regular replens and then durex play lubrication good.
Two other suggestions, firstly try woman on top as for some reason this is easier in this situation, maybe because you have more control. Also, initially when you know it's going to hurt try manual stimulation of your partner prior to penetration so that he comes quickly and it is not so painful. I know this might sound awful but the aim is just to start stretching the vagina so penetration is not painful and then when you can tolerate penetration without pain hopefully it will start to be a pleasurable experience for you too eventually.
I hope that makes sense - I did read the above advice somewhere but I can't remember where.
I have done all the above and achieved it all apart from the pleasure!! But it is worth it and makes me feel more 'normal' to be able to have penetrative sex. I have more or less given up on my libido.
It does help to know others are 'in the same boat'.
I wasn't told that this would be a side effect after bc treatment. I am using replens and vagifem, which makes it possible. Before this it was impossible. We have both accepted that it is never going to be the same again, and that is really quite sad, but I am under no pressure from my husband, and we are both physically affectionate, so I'm not in the same boat as you mounties, which given what you've gone through sounds pretty harsh.
My husband totally accepts the loss of libido is not my fault. He tells me all the time he is just grateful for the fact I'm currently well and we're still together. I am never under any pressure to be intimate at all and when I'm totally incapable we enjoy all the stuff like cuddles. He also holds my hand at the pictures, which I find very sweet - it's like being a 47 year old teenager. Whilst we always had a good sex life prior to this, we don't think sex is the be all and end all in our married life.
I couldn't agree more Bahons that it should be discussed with us and OH. It has never been mentioned to me that it would be one side effect that there would not be any magic pills or potions to remedy. My hisband came to see Gp with me and i told her that if she didn't help find a remedy for lost libido i wouldn't have a marriage for much longer. Trouble was husband piped up "my wife exaggerates sometimes" so i don't think she took me seriously which is why only thing she suggested was this stupid therapist. I just hope its not like one of those daft swedish sex things i've seen in documantaries on the tv before or i will be out the door. I think we have to be totally honest with partners and say "sorry its gone through no fault of our own, but we're alive and still your wife"
It's so sad, isn't it?
There isn't really anything that brings libido back except the very substance that made us ill in the first place.
These 'health professionals' need to sit OHs (and GPs too, if yours is anything to go by, Mounties) down and spell it out for them. I think most doctors, bcns, etc are too frightened to or regard it as unimportant (as they so often do with side effects). OHs need to realise it's neither their fault nor our fault, but a ghastly consequence of the current methods of treating breast cancer.
It seems that in the 'battle' against cancer, the state of the battlefield gets a bit overlooked!
I can identify with this problem so much. It has really got to me today as oh would love me to be intimate with him but I have no libido and the pain and dryness are horrific, i feel like I have been castrated. My bc was completely oestrogen sensitive so anything hormone based is a big no no. I had a hysterectomy 5 years ago and was on hrt but now that is not allowed. i feel like an old lady. Yes, OH needs to realise that I cannot help it.
I totally agree with you Bahons its not a head thing its purely down to the fact that the first thing chemo affects is your ovaries as they are the softest part of your body, and i was told that by a bcn. I only agreed to the counselling as that was all Gp could suggest, she seems to think its to do with my body image since mastectomy, but its not. I keep telling my husband its dead and it isn't coming back so get over it. We have tried every product on the market including sylk but nothing gets your libido back.. I came off the Arimidex to see if that made a difference 3 months ago but still nothing. Sorry but i would rather have a cup of tea and a book in bed!!!!
I have had problems with lubrication even before having BC, but tamoxifen & then arimidex made it much worse. Replens didn't make much difference, but the most useful thing I found was Liquid Silk sexual lubricant, which is so good that we are still using it now I am off the arimidex. You can buy it via the internet, and I've found that the cheapest place is the NHS in Camden (St Pancras Hospital) - they are fast & efficient too.
Hope that things improve for you. It's bad enough having BC without having to give up sex too!
No, I haven't.
Does she have a box of libidos in her filing cabinet or something?
So sorry, didn't mean to be flippant. I do hope you find it helpful, Mounties. It's just that it's not a 'head' thing, as far as I can see. Most of us seem to be have been subjected to vast, and possibly irreversible physical changes (and by this I'm including sex drive) as a result of our cancer treatment. The few drugs that might put it right could endanger our lives. There has to be a better way, girls.
BTW, has anyone been prescribed Viagra (and is the ladies' equivalent Cialis or something like that) and did it work?
I have had letter telling me i have a counselling appt next week with a sex therapist!!!! Not sure what thats going to entail as i have to go alone first time round. Has anyone else been to one of these and found it helpful?
The pesseries I have been given are not for lubrication as such, but to stop the pain I have on trying intercourse, due to the lack of hormones, the tissues become thin, and the Onc said a lot of ladies have this problem, and this usually sorts it out.
I know we should be avoiding hormones, but to me, I have to balance all things, and the Onc was happy for me to have this, and I do know it carries a small extra risk, but I have weighed it all up and come to an informed decision.
Its true, the last thing you think about when you start the long road of treatment, is that your sex life and drive will disappear!
My libido is hit and miss, and the pain thing each time certainly takes away any amorous feelings!
Here's hoping this helps.
Best wishes to you all.
Sounds like you struck lucky there, Cherub.
It was never mentioned to me until afterwards (too late!) and then only by a bcn in passing, although I didn't exactly expect having my ovaries removed and then taking Tamoxifen was going to turn me into a raving nymphomaniac anyway.
This is the trouble with oestrogen positive cancers - the most effective methods of treating them are the ones which strike at the very heart of what we are and the options for remedying this seem pretty pathetic to me. Puddleduck's info about the three types of oestrogen has given me hope however that there might be more targeted therapies for this out there somewhere. (I've asked about topical oestrogen more than once, but the answer's always been a resounding 'no' for me so far)
I had a female Oncologist and was warned about loss of libido etc., from the outset. Her Registrar was a young man and I had no qualms discussing these problems with either of them; the Registrar referred me to the menopause specialist. My breast care nurse told me the Breast Surgery and Oncology team at my hospital don't like the loss of libido situation to persist for too long in the women they treat (it was for that reason I was discharged from their care later than I should have been). My husband attended every appointment with me so we were spoken to as a couple. It was partly because of my total loss of libido and post menopausal issues that the oncologists got me counselling. The people who didn't understand any of it were my GPs! In some respects I think you have to be bold and open with your doctors about this, otherwise you may not get the right help. I've met too many women who have been scared to talk about sex issues.
Hi Mounties - and everyone else
Has anyone - GP, onc, bcn, anyone at all, explained to your OH that the way you feel is NOT YOUR FAULT? That you need help, not scorn? These treatments are so brutal......and the loss of libido, etc, is not something the medical profession should keep quiet about and hope we don't notice! I don't think this problem ever gets mentioned in all those breast cancer stories that appear in the Press and magazines, either, more's the pity.
Thinking of you.
Hy, Deborahw, the things you have been given by your onc are they for lubrication or to help your sex drive return? Just wondered as i am due to see mine in couple of weeks and could ask for similar products if they do help with libido. Either that or divorce, thats how bad things are getting now. Believe it or not my hubby told me this morning that the girls that act ( i use the word loosely) in porno movies don't get any pleasure so why should i worry, made me laugh anyway, maybe it can be my next career move. lol
Just an update.
I have just got back from seeing the oncologist, and he was very understanding. He is writing to my GP and is happy for me to have Vagifem pesseries or the equivalent cream, so I am very happy and he said this should sort out my problem.
I know this isn't for everyone, but in my case and with my good prognosis, the small extra risk is worth it for me, as it has been having a very damaging effect on me phsycologically.
Best wishes to you all
Love Deborah xx
Hi to you all
Sorry there are so many of us suffering with this horrid problem, but thanks for all the input, and I will definitely let you all know how I get on.
Meanwhile, we will just have to keep our sense of humour, you have to laugh, or you'd cry!
Love to all
Hi Deborah, sorry to come into this so late, but my Mum had a major problem with this, it was incredibly painful, she went to see a specialist who really helped her out. Now it was nothing to do with BC or anything, but there are certainly doctors out there who can help if you get your GP to refer you.
Hi Helen and all
I just wanted to give a bit of advice regarding alternatives to HRT. Before you take anything do check with your medical team as some alternative remedies can adversely interact with your prescribed medicines.
Valkyrie your comments made me laugh - at least your sense of humour hasn't left you - and I know its not a funny subject and really important. I am not currently suffering from this issue - although during chemo I too thought it had emigrated forever. Are there any homeopathic / natural vito oestrogen HRT alternatives that can be taken ???
If I get chance later might google natural alternatives to HRT - if any one has time perhaps they could share it with us -
Bahons2 has nailed it on the head - chemical castration. My libido has vanished too (on Tam and Zoladex) so got usual menopausal prob of dryness but found that Durex Sensilube works reasonably well as a lubricant so got that prob sorted out BUT I now have no inclination whatsoever for sex anymore - it gone, disappeared, last seen disappearing over the horizon several months back - perhaps it's gone south for the winter but something tells me it's not migration but emigration, never to return. I'm with you Bahons2 - we need LRT, and soon!!!!!
I don't think the lubricants can solve the libido problem, unfortunately.
What is rather coyly called hormone therapy (Tamoxifen, Arimidex et al), is, in fact, chemical castration, as far I'm concerned. I think that if you take anything that interferes with the oestrogen in the body, it will directly affect sex drive.
Let's hope they come up with some LRT (Libido Replacement Therapy, lol) one day!
Let us know how you get on, Deb.
I have tried sylk, replens and even the durex lubricants but have still not found anything that works to get me in the mood again. I have even stopped taking the arimidex in the hope that this might make a difference but now been 2 months and nothing so far. Deborah you will have to let us all know how appt with onc goes as maybe he will know of some miracle product we can all get in tanker loads!!!!!
I have read recently that inserting gel capsules of Vitamin E can help with dryness, just as with face creams - not so messy, too . Have no idea how often this should be done, etc, etc....has anyone else heard of or tried this?
Hello all, My bc was completely oestrogen sensitive so I am not allowed any hormones at all. I had a hysterectomy at 34 so already menopausal but was on HRT. However, i had to stop after bc diagnosis. i have tried replens for dryness but found it very messy and hard to use. i am glad i am not the only one with problems in this department. I found it very frustrating as love my partner and have strong sexual feelings for him but physically it is too dry and painful.Has anyone got any other ideas?
Both my bcs have been oestrogen and progesterone positive and I've been told under no circumstances will I be prescribed anything containing oestrogen, not even for topical use. (Something about it still being able toget into the blood stream?).
But.....I didn't know there were THREE different types of oestrogen! - thank you, Puddleduck. I may take this up again with my onc to see if there's anything out there for me after all.....
I think that if you are hormone negative, there seem to be more options available.
I thought Replens was useless, Sylk is a bit better..
Good luck with this one, everybody.
I rang the BC nurse and she was really helpful. She did mention the menopause clinic, but said I would have to go to one which deals with breast cancer patients, and I don't have one really near me.
However, she has got me an appointment with the Oncologist for next Tuesday, 13th, so I am feeling a lot more positive, as they will hopefully be able to offer some help.
Thanks again to all.
Good idea to contact your BC nurse as they can access services your GP maybe doesn't know about. Stirling University did a big study last year on cancer patients and most GPs said they were happy to take a back seat whilst the Consultants got on with it, but most said they felt they should be doing more for the patients registered with them who were undergoing cancer treatment. Quite shocking really, but at leat they were willing to admit their failings which is a step in the right direction.
Thanks to you all for your comments and taking the time to reply, I'm really grateful, and what wonderful support you get on here. Its good to talk to others who are or have been through the same. I haven't been on here for a while, but the support is amazing.
You have given me a lot of useful information, and I shall face the GP with renewed confidence and knowledge, and I will insist on a referral, if she seems unable to help.
I am also going to ring the BC nurse today, and see if she can steer me in the right direction.
Thanks again for you help, and I will indeed keep you posted.
Love to all, Deborahxxxx
I wondered if you could get help via your breast or oncology clinic like I did? On my discharge I was told the oncologists are there for patients during the 5 year remission period, despite the fact they are no longer seeing you for regular checks. I was given an extra check before discharge as the Consultant Oncologist told me they didn't like to discharge patients if they had menopause issues to be treated or if the patient had been referred for counselling as they liked to make sure patients had their needs covered. I was discharged half way through counselling.
I can also get an appointment with the menopause specialist I saw for 5 years as her clinic keeps you in the system and I can contact them for an appointment without having to see my GP.
I know services vary around the country, but it might be worth enquiring about.
I meant to add that family planning clinics don't diagnose gynaecologic conditions: they deal with cervical smears, thrush and certain blood tests for infections in some places. Beware that you don't get a referral to any specialist from a family planning clinic.
I'd be inclined to seek out a better GP.