2.5 years after DCIS and DMX Low sex drive

Hi Nan,

Last month was 4 years for me since my DMX.  I had some complications and quite a few more surgeries to fix things and reconstruct, but have been without surgery for a year now.  I've found that in the last 6 months I've regained more happiness.  Even though I have the tightness and discomfort I have to say it has gotten better. Sometimes for several hours I don't think about it.  I almost never have the "itch" anymore. But I think those nerves are re-growing, like you mentioned. I wonder if they are under the implants, since that's what it seems like. There's still the tightness but for some reason at least having something seems to have reawakened, at least in my brain, slightly more sexual pleasure. It will never be the same, unfortunately; my dr. explained that there was a nerve from the nipple to the lower female erotic zone that was of course terminated when the breast tissue was removed. I want to share that because only those of us who've had this happen to us can truly know what the experience is like.  And if you are young and/or had a good sex life beforehand it is very, very hard. I have a friend who went through it 2 years after me and though she had been very supportive of me and heard my most intimate stories, she has said she didn't truly understand until she experienced it herself. I hate to see her have to go through it but I have to say at least when I see the same things in her I know it's "not just me". And it's "not just you".  So wanted you to know you aren't alone.   Also one thing I don't know if you realize: the surgery caused me to go through menopause--twice.  The hormones are on a real rollercoaster and that doesn't help, so keep that in mind too. I didn't realize that estrogen is in your boobs, so there is a big drop when they are removed.  Also, your stress levels are high so the cortisol hormone is elevated. I exercise to help that and try to control stress any way I can. I try my best to look on the bright side--like how it doesn't hurt my chest to be in cold weather or to swim in cold water, and I don't sweat much anymore in my damaged armpits or between my foobs. And I live in a hot climate. But I'd be lying if I said I didn't miss having feeling.  With time there just comes more acceptance. Oh, and my friend and I both wear more makeup and nicer clothes and try to be more feminine these days than we were before the surgery (although we were perfectly happy with ourselves then). It helps our feminine self esteem in a way we never needed before.  I have to say I drink more alcohol than I did before, so that I can relax in the bedroom. And I talked and talked to my husband until I think he finally understood what was in my mind and how to help me get through it. Now I also have a therapist to whom I can say whatever I need to say and it helps, even though he's a man.  He just listens and doesn't judge or deny or downplay what I'm going through.  I'm wishing the best for you. Keep talking.  I too think there are so few people who understand; there seems to be a wall of silence. Maybe they are afraid to scare the newly diagnosed. And I've learned others put up a wall because they are scared and don't want to hear it. But maybe that wall needs to come down so people know how hard the aftereffects really are.  It's not pretty or pink or cute or fluffy or anything good.  And it would be great if it never happened to another woman. But I've learned to respect my strength for having lived through it so far. You are strong too, and a beautiful woman for it.  Try to enjoy every good thing that you still can!

And Hope, I have had a lot of anxiety since the DMX. Therapist and exercise helps with that too. Again, the hormones, especially cortisol, might be partly to blame.  Plus just having BC taking away the illusion of having control over our life.    I'm rooting for you too!

I choose to think that my breast tissue was used for doing research and helping someone else.  I have no idea if it's true, but I did sign releases about that so it helps my mind to believe it.  I've met other mastectomy survivors who also wondered and were upset about it. Maybe it will help you just to know that. Again, you aren't alone.

Hello all.. I've been thinking about this whole awful experience. I want to be positive and strong but let's get real.. It sucks!!! And I hate that word..but it's so true. I was diagnosed at 36.. It was invasive and aggressive, so I had DMX and aggressive tx. That put me into menopause and now I take tamoxifen so I will stay there.

Trying to have sex is a chore for me. Not having your breasts is a awful thing for a woman to go through. I just had my recon surgery and was really hopeful that would help my confidence, but it's been kind of disappointing. It's so obvious they are reconstructed.. at least on my bad side. And not having nipples is the worst. I think that bothers me the most.

So I feel your pain. I have barely any desire for sex. My husband understands this is hard for me but he doesn't know how hard it really is. I am talking to a therapist so I hope that helps. I want to be confident again. I feel like someone else in my body. My hair is growing back but it's super short and I have had long hair for years. It's just so hard to to become comfortable and confident again. Any suggestions?

There is a Sex Matters forum on here. You should come over there.