The bedroom department!

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Hi all

Just wondered how things are with some of you in the bedroom dept. (or any other place for that matter!)

I had mastectomy 2 yrs in Sept. this yr. Recon i hate (currently waiting to go on waiting list for new recon this year i hope!).
Being on tamoxifin has not done me any favours in that area either!

So all in all, things are not good . I hate the way i look at present, and being on this drug at the same time.

Are things any better for you?
How do your partners view your mastectomies/new breasts?
How do you overcome the effects of tamox in the lower regions?
Can you get replens on prescription does anyone know?

Thanks.

Nazx

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HI Naz,

I had a lumpectomy left breast 11 years ago, breast looks ok,
I had mx right breast last November,

my oh doesnt have any issues about how I look, BUT and it is a BIG BUT I do…
my oh says I look beautiful to him, and that he loves me more than ever,
sometimes I feel like screaming at him, it isnt about you its about me,
that sounds very selfish but thats how I feel,
when we first met 14 years ago we had a very active sex life, but now as time as gone on sex doesnt seem so high on the list of things that matter, it doesnt mean we arent as close or feel any less for each other, quite the opposite considering what we have been through together,

It is very difficult for me, because if I dont feel right about myself I carnt seem to function all of the time in the physical department if that makes sense.

The only thing I can compare it to is when I was a few stones overweight, felt bad in my head, dieted lost weight, felt good, it all has a knock on effect (pardon the pun),

I am not on tamox so carnt help you there,

you could try talking to your partner and tell him how you feel, if you havent already,

you arent alone in hating the way you look, having said that I seem to have days where I dont feel too bad about it, I have more surgery planned so will eventually end up breastless, I dont want to go for reconstruction, fear it will not be result I want,

It seems to me it all takes time, I hope everything works out for you

best wishes Liz xx

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hi naz, i dont have that added anxiety i was widowed over 8 yrs ago and have never wanted to meet anyone else so have been single and sexless and happy that way but your post made me really think because even though our oh prob just happy we are here and love us just the same i think i would really struggle to feel myself after all this , i never had alot of confidence in my body anyway so really dont know how this would have affected me had my hubby been here you have raised an interesting post take care x

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Hi Naz and everyone else,

I’m not in a relationship as such at the moment - well, not as regards having sex anyway. I’ve got a very close friend, but we’re “just friends” n I dont think it’d ever develop anything further. Gosh, it’d really spoil what we’ve already got friendship wise if so, cos in the nicest possible way, we love each other to bits, but don’t fancy each other!

But, when I do meet someone in the future, who I fancy and I want to make love to, I guess I’ll feel very strange, n will wonder WHEN to tell him about the mx. Guess, I’ll just have to deal with that when it happens. I’ve had what seems like huge body image problems since my mx last October, and so many of you have been lovely and supportive with me on here - and yes Naz, you’ve been one of them so thanks so much!

It’s a huge issue you’ve brought up here Naz - thankyou so much for airing it. It’s so important how we feel about our bodies - however someone reassures us they think we look fantastic and love us, it’s really about how we feel about it that’s important, just like you’ve said here Naz.

I really hope you can get on the list for new recon as soon as poss, n good luck with getting it!

With much love,
Shelley xxxx

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Hi all

Thanks so much for taking the time to reply to me…

I am so glad you have, as i was was worried that i sounded vain in my post.

I guess the whole experience has had some kind of impact on me, losing my hair was devastating and i could mnot deal with that at all.
Now i am looking at the chest area and thinking, crikey, not good at the mo. Plus the se’s of tamox making things a little worse.

I keep trying to imagine how i would feel if i had my two old breasts now. I would feel alot different i know. More confident for sure.

The knock on effects of bc can be hard to deal with.
I need to get to a point where i can feel happy with myself…but not there yet…

Shelley, THANKYOU for your post…how are you feeling about stuff now?

xxxx

xxxxxxx

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Hi NAZ
We had a couple of good threads going about this topic a few weeks ago. I’ll see if I can find them and bump for you.
Nikki x

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Hello there again Naz (and everyone else too!),

Yes, I sometimes wonder how I’d feel with my breast back - but guess I want it ALL though (lol!), as I’d have to have my nipple back to normal, as the Paget’s made it look very unsightly. Still, I know I’m lucky in as much as both my primaries were very very early stage ones, comparatively speaking.

Mostly, I’m happy with my body image, although as you know Naz from replying to me when I have my down days, sometimes I’m really unhappy with it.

Overall though, I’m fine when I look in the mirror undressed. It’s my left breast that was removed, so when I put my hand on my scar, I can feel my heart beating, and I love that feeling. I really love my prosthesis too - love the feel of it, especially as it’s one of those with the extended part that goes towards your armpit. I never thought my bcn would let me have that type, as I think theyre for people who’ve had node clearance which I havent had, but my dcis 10yrs ago was towards my armpit and was 4cm, so for years after that I had pain and hardening in that area following the WLE and radiotherapy. Now thats all gone, cos he removed that hardening along with the mx, and all I’ve got in that area now is the the fullness of silicone prosthesis instead of it being uncomfortable with the hardening and pain after the first treatments.

Nice clothing helps - I’m due new bras, and am going to try to find a prettier everyday bra as comfy as the Amoena Mona - I have other prettier bras too, but have to say these are the comfiest for me. Also, nightwear has made me a bit uncomfy since the mx cos although I dont usually have problems seeing myself left side bare chested, I’m still not too keen on seeing myself in nightwear with the “missing boob” very evident. I’m getting much better at that though - and for my birthday a friend bought me some pretty blue n white pj’s from M & S. There’s something about that particular style that “plumps out” at the chest area, and you can hardly see I’ve got a boob missing.

All that gives me confidence. That’s what we all need isnt it - confidence with our new body image! Confidence to feel sexy with our “new normal” - if that can ever be.

Oh gosh I’m probably woffling here - but its just made me think of something. Years and years ago, I worked with people with disabilities, and a friend had previously known a certain person I assisted with day to day care. This person had physical disabilities too, and his body was quite deformed. My friend recounted how she’d helped him to have a bath, and whilst in the bath, he’d turned to my friend and said “Don’t you think I have a lovely body?” My friend had answered that yes, she agreed with him. I thought it a lovely story at the time and still do so now too - that someone with cerebral palsy and a very physically contorted body could be so very happy with how they looked. Top marks both to the person with cerebral palsy and those who had been around in his past for giving him such a wonderful and positive self image.

I’ve digressed, but I wonder if there’s some sort of message there for us. It’s so bloody difficult to lose your breast and be faced with a life-threatening/changing illness. If only they could implant positive self-image at the time of our mastectomies and lumpectomies!!!

You’re right Naz, the effects of bc can be devastating at times - just when you think yhou’re through the next hurdle, it all rears its ugly head n comes back to bite u on the bum, n youre back on that downward spiral again for a while. You think you’ll never come out of it - n then sosmeone lovely like you posts a reply, n you realise you’re not on your own, n there’s others like you!

So Naz,you take good care of yourself, n it’s more than ok not to be there yet, as you describe. I’m thinking about you - and also about all you other ladies n gents who may be reading this. Bc is s…t and it affects us horribly at times n often unexpectedly when we think we’re doin ok, but we dont av a choice but to get thru this. So… we all need to keep posting n reading n visiting this site to be there for each other!

Luv to everyone, n sorry I’ve gone round the houses here, n been rather lengthy in my post!

With much luv, n big hugs to everyone!

Shelley xxxxx

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gosh, all this makes our problems seem minor. my husband is normally quite sympathetic if i get hurt or bruised. i was amazed at the state of my breast after the WLE, totally purple running round my back and across the other breast, but when i said–gosh look at this he refused to look.So now I have now asked him if he is worried about what I will look like, he looked a bit sheepish and said yes. this whole subject never occured to me, I was just worried about having cancer and getting better. I dont know what is going to happen when the dressings come off and we see what it looks like.

so goodness know how we will be if they did not get margins and i need more taken out.

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Hi O and L, I would not worry too much about how it will look after the bandages come off. The surgeons are so into trying to keep the scarring to a minium these days. I have had two lumpectomys. One being three years ago which was benign, and the second being my cancer. I have shown anyone who has asked my scars and people have been amazed how good it looks. I did not have clear margins so the surgeon will be going in again on Friday to get some more, but I am quite certain even after three ops it will still look ok.

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Quick answer, NAZ, this is NOT just vanity, it’s about knowing who we are and it’s deeply about our own existence. Can’t write now, too tired, but it matters deeply to each one of us how we feel about our bodies.

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Hi Naz,
In answer to your question you can get replens on prescription and also sylk. I have used both and found the sylk better for me. Discuss with your GP or bcn.
You are definitely not alone in this.
Will speak to you soon
Tessa xx

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Hi, what is the difference/advantage of Replens or Sylk over KY?

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Not sure how much use I’ll be in answering this since I’ve not had surgery for bc yet, but I’m disabled. I have a spinal scoliosis so my back’s not straight. I have problems with arthritis that mean my ankles aren’t as they should be, and I have scars aplenty from previous operations including huge ones from ectopic pregnancy where I nearly copped it.
Hubby and I still have a very silly, lovely and cuddly love life at the same rate as we always have, even through chemo. For us, it makes no difference how I look, because what matters is how I feel inside and how much we love and care about each other. Maybe so many years of getting used to having a body that isn’t ever going to be fantastic means that I don’t mind so much. I like to take care of my appearance, but if bits are dodgy or missing, well, they just are for me. Just a different perspective.
Ann x

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Hi All

I have been too freaked out by my appearance to even have sex for almost 3 yrs. In the beginning I was a bit more positive and even dated but I had one or two very off putting dates (one case: I told the guy I’d had mx and he excused himself a few minutes after - I thought he had gone to the toilet but he paid the bill and left me there, took me a while to realise what had happened, another got frisky and felt the encapsulated recon and drew back in horror saying “What the hell is that?”). I have lost confidence with men and I am quite humbled by the stories Amber and Shelley have recounted. But I am totally superficial - I was hot and now I’m not and I am struggling still. Still do not like the far from perfect recon but glad it is there. Even more glad to have the faux nipple - but mostly it is the physical sensation of having breasts that I really miss (had an op to try to match them and as a result of mastopexy have no sensation on good side either).

Not sure what helps but if clothes etc help you feel confident then you should go for it. Naz,you ned to get that recon sorted and I think that if it is half decent and has a nip you will feel a bit better. And the sex - well, have no advice on that but willing to learn.
Love to all

Jane x

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Hi All

This is the bit they don’t tell you about!! Which I think is wrong as the support is there for the operation but not how you live life with no sex drive whatsoever. I am 32, on tamoxifen, had chemo this time 2 years ago following a mx and LD reconstruction of my left breast. I have to say my reconstructed breast looks really good considering. I still have my nipple, which even goes hard when cold! The trouble is, it may look like a boob but that is where any similarity ends! If my husband touches it in the way he always did, it feel repulsive and not a pleasant sensation. Which is quite a turn off when it takes so much to make you feel turned on in the first place.

I don’t know about other women, but my boobs played an important part in having sex. When my husband touched them, kissed them it turned me on. It has taken me a long time to have the confidence to say to him he can touch the remaining one in the same way he did. Things are getting better (when we have sex, which is not often), but I feel without a proper working boob I am 50% less turned on. I just dread the thought of getting BC in the other boob and having to have that one off. I think I would never be able to have enjoyable sex again.

As for the tamoxifen. Yes I am sure it completly depletes your sex drive, dries up everything! Sylk is available on prescription and is the best lubricant around, far better than KY or others. It helps make things more comfortable but it doesn’t give you the interest in having an active sex drive.

I am so surprised that there is not more support for women around this. I think it helps greatly to know you are not alone, but what would help is to have some support from the medical team.

Rant over!!

Boo
x

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Hi guys

Thanks once again for all your replies.

Ninja, replens is a lubricant that is used internally. Sylk externally, but ky is prob as good, not sure?

Amber, your post has made me think. I am thinking about what is important and that is to have a good relationship with OH, come what may…even if bits are as not as good as they might be.

However, at this present moment, i find this hard to do. I guess i am still grieving for the loss of my breast, 21mths down the line. Some days are fine, and other days are not so fine.

Jane, you are right. I need a decent recon that i can be happy with. Living breast free is not an option at all, so i must have something there - but not what is there at the moment.

I just miss my old body right now…what most other women take for granted…

Thanks for replying …at least i know it is not just me thinking these thoughts…

xxxxx

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Boo

You hit the nail on the head!

Without boring you with all the finer details of my previous sex life, my breasts also played a large part in myself and OH being intimate with one another.
Now, like you say, it is just not the same…1 functioning boob,and one that does nothing!
I am thinking now, what is the point of having a reconstrcted boob, if it won’t work in that area? A nipple which does nothing and is there for show only.

There certainly needs to be more support for women in this area. Surgery/chemo/rads is only the half of it.
The tamox has caused havoc with my sex drive, to the point where it does not hardly happen. But the main problem,is my missing boob. :frowning:

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Boo and Naz

I too am one of those who has to have boob stimulation but it always was enough to have me on the edge (blush) - I seem to have fewer erogenous zones than one is supposed to and i really cannot get turned on by having my leg/neck/arm stroked. Like you Boo I have lots of unpleasant sensations in the recon and my back (LD FLop op)and I am angry and upset that this c****y disease has robbed me of my sex life. I seem to have lost the ability to climax, admittedly only DIY but takes me ages to get any sensation and then nothing!

Have not found any advice that helps yet but know that feeling comfortable in your skin has it’s part to play and for some people that’s with recon while others can accept themselves without. And not being angry has something to d with it. and feeling pretty.

Good luck

XX

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KY tends to turn a bit gritty with friction… its ok for a few minutes but it tends to turn into jelly blobs after a few mins.

there are lots of lubricants which can help… replense, sylk, glide, yes… different people prefer different ones.

vagifem is a very very low dose pessary and ovestin is topical oestrogen cream which can be used for people who have breast cancer and are on tamoxifen… some oncologists or GPs arent keen to prescribe even though there is no evidence for this… but there are some breast cancer menopause clinics… i know the one at northwick park hosp takes referrals from out of area.

there are other preparations that come somewhere in between… like wild yam cream or phyto-oestrogen cream are beneficial for some women.

your sex life is an important part of who you are and how you see yourself… try and talk to your OH and you can ask to see a psychologist if you are having trouble adjusting to the new you… your BCN or onc should be able to refer you for this.

Love and hugs

lulu xx

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Well said Lulu, it is an important part of your life. I don’t think psychs have much to offer, I was referred to one who is supposed to be a cancer specialist and she was very much of the view that sex was unimportant and that the right man would accept my physical imperfection. Maybe so, but some of us can’t find Mr Right and Mr Right Now usually is not going to make that kind of investment in talking…It wouldn’t be so bad if there was any pleasant sensation anywhere in the body. Don’t now if it is this, or Tamox or what that makes so many of us so miserable.

Rant over, hope I have not offended any one

xxx