Is there sex after chemo, tamoxifen, menopause ?

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Hi everybody,

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.
Liz xx

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Liz
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
Flora xxx

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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!!!

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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

FYI Links below
cortlandtforum.com/tissue-changes-associated-with-vaginal-atrophy/article/179960/3/
europeanreview.org/articolo.php?id=575

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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!

L. xx

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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.

Take care.

NASREEN X

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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.

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Ladies,

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.

Liz xx

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Hello Liz,

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.

Jacqui x

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Hi Jacqui,
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

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Hi ladies,

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!

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Hi
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! :frowning:

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Hi

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.

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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!

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dear all,

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

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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…

Take care.
Nasreen x

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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

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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.

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bump

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Hi
The section “living with and beyond breast cancer” on this forum has a board devoted to these difficulties - so I would urge you to look there as well - in fact, keep looking anywhere and everywhere! These problems can leave you feeling demoralised and disappointed, and professionals can give you the impression that no-one else has ever had these problems - but there are THOUSANDS of us - and there really are things available that can help - even after years of enforced celibacy.
If tightness is part of the problem, dilators may help (available on prescription; advice from a specialist gynae clinic may be helpful and supportive); if lack of lubrication is an issue and water-based products are not helping (or are adding to the discomfort, eg. re unpleasant/stinging sensations) you may find an oil-based lubricant helpful - such as ‘Yes’ - best used in conjunction with a water-based lubricant as well (but note you cannot safely use oil-based with condoms) - and many people recommend using this as a regular moisturiser to improve the general state of the vaginal tissues, as well as extra during love making; if pain is still a problem - or a particular difficulty with using dilators to stretch tight tissues - there is an anaesthetic gel which may help - careful application to specific area about 30 mins before you need it will still allow adequate sensation during love-making - I got this gel from a consultant specialising in vaginissimus and vaginal pain and hope I can get more when the need arises.
Persevere. It has taken me years and years to find help for these problems - sex has been difficult all my life, and smear tests excruciating (best in my experience being at a specialist gun clinic who have smaller sizes of speculum available to use) - and I have found this forum very encouraging and supportive since diagnosis with breast cancer in June 2014.
Persevere … until you get help that works for you … hugs… x