Sexuality issues

melaine
melaine Member Posts: 1
in Breast Cancer #1
I just can't seem to get over having lost all breast sexuality. I wasn't supposed to lose two breasts... just one. But reconstruction left me with one post-mastectomy reconstructed 'breast' (I still don't consider it a breast) and an implanted natural breast that now has absolutely zero sensation in the nipple. It has been 3 yrs since the last reconstructive surgery, so I am clearly not going to regain any feeling.

I have been married for 27 yrs and nipple stimulation was always how I got 'in the mood.'
I regret the choice of reconstruction so much for what it has done to my body. I would have been better off flat with a scar on one side, and still have a healthy, feeling breast on the other side. But the plastic surgeon told me this is what was best (to have the non-cancer side modified) in order to achieve symmetry! Wow. That is no trade-off, let me tell you. I could give a sh** less about symmetry. I'd rather still feel like a sexual being.

It doesn't help matters that my husband had prostate cancer several years ago & as a result of that, he can no longer achieve an erection. Pills don't help (Viagra, Cialis, etc). Those stupid erection pumps are a joke too. I have had no one to talk to about this and it is so difficult. Nobody prepares you for what's really ahead. Instead you get smacked in the face with the reality of it all... and then there's no support to be found. My husband didn't have prostate surgery, he just had hormone treatment and radiation. Nobody told us (12 years ago) that we had had intercourse for the last time. I'm 55 years old and my sex life is over.

I am glad to be alive, and I am glad my husband is alive. But that doesn't mean grieving the loss of sexuality isn't real and isn't damn hard.

I've been keeping these feelings in for a long time.

Comments

  • tufi000
    tufi000 Member Posts: 745 Member
    #2
    Been there done that
    The feelings are real but a good life is not out of reach. There are quite a few internet sites concerning sex after breast cancer including here. I think it is in the after treatment section. Last year there was a conference on this too and I know it is published somewhere in cyberspace. Locally there might be something available at your cancer center.

    Cancer always requires a search for and adjustment to a "new Normal", but it , in no way has to mean, less of a life.

    I will not lecture you here, we get enough of that, but check it out, and the best to you.

    I am now 63 and the beast hit me at your age too. I'm good with it.
  • AMomNETN
    AMomNETN Member Posts: 242
    #3
    Feeling
    Melanie,
    i understand your sense of loss. 2 years ago I had a bilateral mastecomy with reconstruction. I have 0 feeling in my breasts. In one way I envy your relationship with your husband. I feel it is much harder because my husband is still very sexual. Since I have absoulutely no interest in sex it can make things difficult. I get comments from him about the lack of sex. He does it in a joking manner but I know on one level he isn't joking. I'm 52 so all this started at the age of 50. I never imagined no interest in sex no matter what happened. Tamoxfin, surgery, and chemo sure shut me down. I wish you the best as you come to grips with all this. No sex is a small price to pay for life to me anyway.

    Janie
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #4
    Same Here
    Your situation sounds so similar to ours and we are 43 and 46. He has had E.D. since we met. I loved the breast play as well. I had complications after my mastectomy and was not interested sex hardly at all. Because I couldn't take birth control, sex was not an option, even with a condom. I just could not chance getting pregnant. We did a lot of touching (I have two vibrators) until we came. When we did fool around the first times after my BMX, I missed my breasts. I still do, but I guess I am to the point where I think, it is what it is. Things really went down hill after my ovaries, tubes, uterus, and cervix were removed. Now I have no sex drive at all, and when I think about it, I miss it.
    We had sex a month or two ago, and he came so fast, it really wasn't enjoyable for me.
    He works in a paper mill and they have them working three to four weeks straight without a day off. It is scheduled four weeks on, one or two days off...so he's exhausted to do much foreplay to get me going. Would I like for us to be like before cancer? I sure do. Do I miss it, yes I do. But again, I tell myself it is what it is.

    I think to really enjoy it, I need him to flirt with me, maybe give me a pat on the butt, kiss me a lot...even before we get to the bedroom. That way I would be all warmed up and ready to go when we get to the bedroom. Some day I hope this happens.

    I never used to mind when he watched porn before, but for some reason since I had my BMX it bothers me, so he watches when I'm sleeping or out in the yard, or gone. I wish I wouldn't feel like that but I do, so we deal with it the best we can.

    We are still learning on how to live. I have a lot of other health problems,too which makes life different.

    I feel bad that you are going through this, too. Major health issues really put a wrench in life doesn't it?

    I don't have any words for advice for you, I am still learning,too. But I agree, the loss of a fun sex life can be hard. Yes, we are grateful to be alive, but doesn't mean we can't be frustrated or sadden by changes in our lives. I think it is better to recognize our feelings and not sweep them under the rug where we don't deal with them.
  • weazer
    weazer Member Posts: 440
    #5
    cinnamonsmile said:

    Same Here
    Your situation sounds so similar to ours and we are 43 and 46. He has had E.D. since we met. I loved the breast play as well. I had complications after my mastectomy and was not interested sex hardly at all. Because I couldn't take birth control, sex was not an option, even with a condom. I just could not chance getting pregnant. We did a lot of touching (I have two vibrators) until we came. When we did fool around the first times after my BMX, I missed my breasts. I still do, but I guess I am to the point where I think, it is what it is. Things really went down hill after my ovaries, tubes, uterus, and cervix were removed. Now I have no sex drive at all, and when I think about it, I miss it.
    We had sex a month or two ago, and he came so fast, it really wasn't enjoyable for me.
    He works in a paper mill and they have them working three to four weeks straight without a day off. It is scheduled four weeks on, one or two days off...so he's exhausted to do much foreplay to get me going. Would I like for us to be like before cancer? I sure do. Do I miss it, yes I do. But again, I tell myself it is what it is.

    I think to really enjoy it, I need him to flirt with me, maybe give me a pat on the butt, kiss me a lot...even before we get to the bedroom. That way I would be all warmed up and ready to go when we get to the bedroom. Some day I hope this happens.

    I never used to mind when he watched porn before, but for some reason since I had my BMX it bothers me, so he watches when I'm sleeping or out in the yard, or gone. I wish I wouldn't feel like that but I do, so we deal with it the best we can.

    We are still learning on how to live. I have a lot of other health problems,too which makes life different.

    I feel bad that you are going through this, too. Major health issues really put a wrench in life doesn't it?

    I don't have any words for advice for you, I am still learning,too. But I agree, the loss of a fun sex life can be hard. Yes, we are grateful to be alive, but doesn't mean we can't be frustrated or sadden by changes in our lives. I think it is better to recognize our feelings and not sweep them under the rug where we don't deal with them.

    Yep Same Here
    I have no desire:{ I wish I did, and I know my SO would like it also.
    I'm planning on taking a trip too the Mountains and rent this cute little cabin that we would go to for a lil adult fun without our kids and Grandkids, before the whole Cancer thing.
    I hope it will help things along, I'm looking forward to a bit of alone time with him.
    Doing without in Denver....Karie:{
  • cinnamonsmile
    cinnamonsmile Member Posts: 1,187 Member
    #6
    weazer said:

    Yep Same Here
    I have no desire:{ I wish I did, and I know my SO would like it also.
    I'm planning on taking a trip too the Mountains and rent this cute little cabin that we would go to for a lil adult fun without our kids and Grandkids, before the whole Cancer thing.
    I hope it will help things along, I'm looking forward to a bit of alone time with him.
    Doing without in Denver....Karie:{

    I hope your get away has
    I hope your get away has enjoyable results! Let us know how it goes. With him working all these hours, I am trying to get him to rent a cabin for us in northern WI. Camping is a lot of work when we tent it. I was thinking a cabin would be nice...
  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
    #7
    Sorry to hear about the loss
    Sorry to hear about the loss of sensation and the decrease in sexual appetite. You are right, doctors don't tell you about this aspect of being human because their main goal is to obliterate cancer. If they were to mention that surgery, treatment, and/or medication might seriously effect bedroom action, I think it would send Survivors into a deeper depression.

    When I was undergoing treatment, I went to a support group. They had many types of services available to Survivors and their families. Is there any cancer support groups in your area? How about the American Cancer Society? If not, is there any way you can talk with your doctor about your frustrations? He or she might be able to give you references of where to go for help. Don't give up, keep looking. You have gone this far, keep going until find answers. Who knows, maybe one of the Pinks can share a pearl or two that will speak to your heart.

    Best of luck with your search.
    Hugs.

    PS Glad you let it out and found your voice. There are others who share in the struggle.
  • New Flower
    New Flower Member Posts: 4,294
    #8
    Bella Luna said:

    Sorry to hear about the loss
    Sorry to hear about the loss of sensation and the decrease in sexual appetite. You are right, doctors don't tell you about this aspect of being human because their main goal is to obliterate cancer. If they were to mention that surgery, treatment, and/or medication might seriously effect bedroom action, I think it would send Survivors into a deeper depression.

    When I was undergoing treatment, I went to a support group. They had many types of services available to Survivors and their families. Is there any cancer support groups in your area? How about the American Cancer Society? If not, is there any way you can talk with your doctor about your frustrations? He or she might be able to give you references of where to go for help. Don't give up, keep looking. You have gone this far, keep going until find answers. Who knows, maybe one of the Pinks can share a pearl or two that will speak to your heart.

    Best of luck with your search.
    Hugs.

    PS Glad you let it out and found your voice. There are others who share in the struggle.

    Melanie welcome
    it is good that you have been making your first step - speaking out about your feeling.
    There is a book "sexuality for the Woman with Cancer" from American Cancer Society . Please check it out, you might find some tips. Last year BelLa Luna and I went to seminar about it. There resources out there, please do not give up.
    I was told by my breast surgeon not to expect sensations in reconstructed breast, I am sorry that plastic surgery did not work for you the way you wanted. I do not have symmetry and I am ok with it.
    Wishing you the best
  • lolad
    lolad Member Posts: 670
    #9
    Melaine
    i am so thankful for you to finally reach out and share your story about this. So many of us are feeling the same. I know i am and im only 38. I too miss the sensation of my breasts. I too have been very down about this at times. Right now i am not in a relationship, but worry that if i ever do find someone else, how am i going to introduce my breasts that are scared and have no feeling because of this mean beast. I think about it and am so embarrassed i dont know if i will be strong enough to deal with that. But anyways, back to you. There are other ways that you and your husband could be satisfied with when it comes to sex. Now please dont think that im getting too graphic here, but have you all tried using a vibrator together? You guys could gain some intimacy that way. I am so sorry that you are struggling so much with this. I hope that i didnt cross the line with my suggestion. I have a few more, but want to make sure it is ok to share it with you. Let me now. Take care
    laura
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #10
    AMomNETN said:

    Feeling
    Melanie,
    i understand your sense of loss. 2 years ago I had a bilateral mastecomy with reconstruction. I have 0 feeling in my breasts. In one way I envy your relationship with your husband. I feel it is much harder because my husband is still very sexual. Since I have absoulutely no interest in sex it can make things difficult. I get comments from him about the lack of sex. He does it in a joking manner but I know on one level he isn't joking. I'm 52 so all this started at the age of 50. I never imagined no interest in sex no matter what happened. Tamoxfin, surgery, and chemo sure shut me down. I wish you the best as you come to grips with all this. No sex is a small price to pay for life to me anyway.

    Janie

    same age as me....I too feel
    same age as me....I too feel the same...also I have had misc other surgeries..so scared all over...I have said half boob & not much feeling post radiation,(small breasted but now lop sided) no female internal parts (hysterctomy almost a year ago due to tamoxifin..

    Denise

    NOW I know I am not alone..
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #11
    lolad said:

    Melaine
    i am so thankful for you to finally reach out and share your story about this. So many of us are feeling the same. I know i am and im only 38. I too miss the sensation of my breasts. I too have been very down about this at times. Right now i am not in a relationship, but worry that if i ever do find someone else, how am i going to introduce my breasts that are scared and have no feeling because of this mean beast. I think about it and am so embarrassed i dont know if i will be strong enough to deal with that. But anyways, back to you. There are other ways that you and your husband could be satisfied with when it comes to sex. Now please dont think that im getting too graphic here, but have you all tried using a vibrator together? You guys could gain some intimacy that way. I am so sorry that you are struggling so much with this. I hope that i didnt cross the line with my suggestion. I have a few more, but want to make sure it is ok to share it with you. Let me now. Take care
    laura

    I don't think men take into
    I don't think men take into consideration the effect of losing part or all of a breast...nor having total hsterctomy. ( I said to him other day I am not even sure IF I have hormones anymore..-went right over his head)

    I have said part of boob, no female insides, scar from hysterctomy (same place as my tubular pregnancy to ver obvious)

    Denise
  • deeb111
    deeb111 Member Posts: 141 Member
    #12
    YES I understand made some
    YES I understand made some of choices that have since changed me and i no longer even feel like a woman and to top it all off gained weight from meds no one gets it un less u have been there even my best friend who is wonderful and more then just a friend doesnt understand this part now i realy no why the song martina sings makes me cry every time cause i just want to feel like a woman again not too sound selfish im happy to be alive but i made the choices and now i dont no how to be happy with those choices so yes i understand im 48 and i left my boyfriend of 14 yrs due to all of this as well as lack of support and understanding on his part
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #13
    deeb111 said:

    YES I understand made some
    YES I understand made some of choices that have since changed me and i no longer even feel like a woman and to top it all off gained weight from meds no one gets it un less u have been there even my best friend who is wonderful and more then just a friend doesnt understand this part now i realy no why the song martina sings makes me cry every time cause i just want to feel like a woman again not too sound selfish im happy to be alive but i made the choices and now i dont no how to be happy with those choices so yes i understand im 48 and i left my boyfriend of 14 yrs due to all of this as well as lack of support and understanding on his part

    I hear you, Denise
    I was surprised after my hysterectomy how I felt. I remember thinking "am I still female"? Add to that the Arimidex and all that comes with that . . . age . . . lack of interest . .

    Suzanne
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #14
    deeb111 said:

    YES I understand made some
    YES I understand made some of choices that have since changed me and i no longer even feel like a woman and to top it all off gained weight from meds no one gets it un less u have been there even my best friend who is wonderful and more then just a friend doesnt understand this part now i realy no why the song martina sings makes me cry every time cause i just want to feel like a woman again not too sound selfish im happy to be alive but i made the choices and now i dont no how to be happy with those choices so yes i understand im 48 and i left my boyfriend of 14 yrs due to all of this as well as lack of support and understanding on his part

    I have always been somewhat
    I have always been somewhat naturally thin (but dont' eat chips,candy etc often) so when I gained 25 LBs i was fit to be tied! I hated it...Dr said it will take time to lose ( i was thinking 2-3 mths..nope..more like years..When I had my hyterectomy last May I lost quite a bit but lack of eating and feeling terrible.

    So we all get it others may NOT...

    so sorry you split up after 14 yrs...but I THINK everything happens for reason...even if we never find out why!

    thinking of you

    Denise
  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    #15
    Double Whammy said:

    I hear you, Denise
    I was surprised after my hysterectomy how I felt. I remember thinking "am I still female"? Add to that the Arimidex and all that comes with that . . . age . . . lack of interest . .

    Suzanne

    suzanne:
    So agree...on other side MY husband snores terrible so any more 90% of time I sleep on couch...he says why dont' you come to bed? well I am up an avg of 3-4 x each night...so when I am sleeping I DONT" want to be woken up by him.

    I thought maybe all post hystercotomy-lack of hormones! I have never really looked it up or asked before or after.

    Then wonder is it just age ? 52 now..

    Denise
  • missingtexas
    missingtexas Member Posts: 146
    #16
    I lost both breasts at 38
    I lost both breasts at 38 (now 40)...it was a huge struggle and took a lot of work to get past it. My husband and I kind if had to reinvent our sex life which was non existent for a period of time. Kind of felt like my boobs (or lack of boobs) were the giant elephant in the room. We had
    to step out of the box and find what the new normal was going to be. Things have never been better. Ladies, this may be overstepping boundaries (what are those?? Lol) but do some researching into things..."toys?" things that might help you along. xox
  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    #17
    I feel your pain as I was
    I feel your pain as I was just 33 when first diagnosed. After years of surgeries, chemo, radiation and tamoxifen, I felt like I was 100 years old (sexually speaking). Things improved, but I can't say that the sex was ever quite the same--as someone else said you adjust to a new normal. My husband had a very hard time with this when we were younger, but when I explained that it was never, ever a rejection of him, but strictly my physical/mental issues...well things got better.

    Communication and humor have saved our marriage over and over. And a good snuggle. Sex is pretty much a lovely memory now, but our love is unchanged and we are happy.

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