Missing My Nipples Really Badly

Outfield

This is just hard for me right now.  My BMX will have been two years ago 7/1/12, so I've had some time to get used to it.  I'm sure I'd choose the same thing again, although I also don't think I had any other good options.  I'm happy to be flat.  I don't miss my breasts all the time, or even much of the time.

But I miss the nipples terribly.  I've been dreaming about them.  First that I was growing a new set of breasts and was kind of disappointed to see them sprouting up again, but then I became very excited about growing new nipples.  Then last night I dreamed that the BS had left a tiny bit of one.  Both times I woke just so upset. Such a tease dreams are.  I really, really miss them.  I don't want reconstruction, I want my sex organs back.   

I'm so pissed to have had to make these choices.  I'm just so pissed and sad.  I have no sex drive on anastrozole, but it doesn't help that I feel like I'm missing so much of my sexual experience.    

I can't be the only one experiencing this, how do you all deal with it?  Does anything help?  I've thought about piercing where they would be if I a male, so that there would be something on my chest that maybe I could feel a little - I'm guessing I'd feel the pressure if I did that.  I hate this blank of sensation.

BikerLee

I miss my nipples too - although I would swear to you sometimes that I still have them (phantom nipple sensations never timed ideally with other activties!).

I hear you.

I had the bmx in Feb of 2012, and I was triple negative.  I'm now on HRT for chemo-pause, and I'm feeling MUCH BETTER!  I'm guessing that you were estrogen positive based on your med. Anyway, my sex drive is returning... and I'm generally just feeling overall better. Included in my HRT is testosterone.  I wonder - is it possible for you to ask about your testosterone levels?  I don't have any answers at all, but I do know that testosterone is important in sex drive and feeling energetic and so on.  I've been on it a little over a week now, and the difference is... amazing.  I feel like me again.  

I hope that helps a little bit.

Hugs.

Lee

New-girl

I feel the same.  Although my boobs were sagging and well used from nursing two kids, I loved them.  They were essential in our sex life.  I look now and see the little patches that will somehow be made into nipples in my next surgery.  No feeling but I am assured not so scary looking at the patches.  Husband just doesn't touch me there anymore.  I so miss it.  I hate the surgery and hate cancer.  I really have trouble with the other women who tell me they would happily get rid of their breasts.  I didn't get new cute ones.  I got a sorry replacement for ones that had nerve endings and brought me pleasure.  It scares me that Outfield still misses them almost two years later.  Been only 3 months for me and I am angry that I didn't have another choice. 

BikerLee

Oh - I don't really miss my breasts.... JUST the nipples.....

GreenEyes57

Me too. I have dreams too about my nipples and my soft, warm beautiful breasts. Unfortunately - they were going to kill me. I am fighting for my life here.

Outfield

I get it that the breasts were going to kill me, I really do. I was diagnosed with stage III IDC that had exploded on my mammogram over 8 months, I had a huge area of DCIS, I had LCIS too.  I don't want my breasts back.  I just miss those nipples so much.  

Texan, sorry to scare you.  Most of the time I'm better than this.  I just feel really down about it now.   BikerLee, I'm not sure about testosterone.  I know some tumours do have testosterone receptors but it's my understanding they're not routinely tested for, probably because the result won't change treatment.  I am so nervous to do anything hormonal to my body.

Wrongchick

Shucks Outfield,  

 I have nothing much to say to assist you, except to say to say: I get it.  There's a gal here on BCO that described her  former breasts as her  "on button."  I love this phrasing, but it depresses me; it's hard for me to imagine how sex will ever feel the same without them.  I'm married to a great guy who assures me that we will find our way again... but I'm not taking it to Vegas, if you know what I mean.

Do you remember that scene in Star Wars when the crew on the Millenium Falcon is  trying to outrun the empire fighters?  Han Solo is super confident that there is nothing to worry about... but when he tries to make the jump to warp speed, nothing happens.  They just kinda sit there, because some vital mechanism has been disconnected.   Sorry for the nerdy SW reference ( I blame my younger brother), but my nipples were the hyper drive for my, uh--spaceship.  At the time of my diagnosis, I was breast feeding my youngest, which makes the outrage all the worse.  I was certain that once I weaned her, I would resume my existence as your average libidinous 40-something.  I loved nursing, but I was REALLY looking forward to her second birthday.     

 I'm not sure where you stand on all the CAM stuff, but I've been anxiously complaining about the nipples/pleasure/drive to my acupuncturist, and he says that once I am out of active treatment there is work he can do to help me with the drive issues.  He maintains that if desire increases, the willingness to find new ways will improve.  Yet I'm still pissed off; I don't want my sex life to be so damn deliberate.  I miss my former body and its responses. I  made an informed choice to  dramatically improve my post-dx odds by sacrificing a beloved part of myself.  As you say, it was the right decision and I would do it again.  But it still breaks my heart.  

I once heard the grief  process described as climbing up a steep spiral staircase.  You are slowly making progress from the starting point, but in order to do so, you've got to pass through the same place over and over again.  So maybe as time elapses, the  sacrifice of our breasts and their super-cool parts will feel less acutely painful and distressing. Two years is not that much time, especially when you consider the enormity of the loss.  Be angry.  But be gentle too.  

Erica3681

FWIW, I want to reprint something I posted on this forum a few years ago, in response to another woman writing about getting phantom nipple sensations:

I know what you mean about the phantom nipple thing. I get it, too, in a weird way. Since I do wear breast forms, I find that if I touch the nipple protrusion on the form, I get a sense of arousal. I feel as if I'm really touching my own nipple. And even when my husband touches it (which I can't even feel, but I can see him doing it), I get aroused. It's kind of a cool (though definitely weird) effect. Early on, it reassured me that even without breasts (which had been such an important erogenous zone for me), my sexuality was okay.

I hope that provides just a little bit of reassurance. Our brains play such an important role in our sexuality. I seem to still be wired to feel aroused when a protruding nipple is touched (by me or my DH), even though it's made of silicone.

MT1

You know? Thanks. Just thank you for starting this topic.

My husband and I just came back from a yoga retreat place that we have been going to for years. We go for rest and relaxation. They have a sauna, whirlpool, yoga, good food. We haven't been since just before I was diagnosed. I love the whirlpool and never used to wear a suit in it, so I intentionally decided to do the same now. It was a busy weekend and two times when I went into the whirlpool, it was quite crowded (women only). I am flat, bilateral without reconstruction, my right breast was affected though it is healed where the left is catching up and has a red line. I walked into the whirlpool and the room got quiet. I was breast cancer incarnate. The second time I tried hopping into a conversation, which was accepted but also fell flat, excuse the pun. Later in the dressing room, a woman was talking about curly hair and I chimed in that they told me mine might come in curly after breast cancer treatment and a few women spoke up and allowed my entrance into the conversation, which helped.

I do not regret my decision at all. I do miss MY breasts. I miss having nipples.

Today I spoke with my husband about perhaps having nipple construction, so that my shirts could rest on something. We also spoke about 3d nipple tattoos and I emailed Vinnie Meyers: http://vinniemyers.com/section/105672_Nipple_Areola_Tattooing.html about it.

I know it won't give me sensation in my nipples back, but it might be nice to feel as though I had something to be modest about. It might be nice to have a semblance of the look of breasts, so that the next time I go to the whirlpool, eyes might glance off, rather than stick.

And yeah, I could wear a suit, but why? I don't want to change who I am because of this disease. I just want to take up the same space as I did before.

Outfield

Thank you all, this is all helpful for me.  I'm glad I started this discussion too.

Erica, that is really interesting.  Makes me wonder, if my dreaming mind can do it, why not my awake mind? 

vivirasselena

I never thought I'd say that...but yes maam...I miss mine, too.

It's great when you want to wear a tight t-shirt and not worry about headlights, but all in all....

I'd like them back.

But it is what it is...or should I say, they were what they were!

Love,

michele 

starzhere

I, also, get the phantom breast feelings and it's been 23 years.  I have also entertained the idea of getting niple reconstruction or a tatto.  Not having the nipple it was seems odd to me, as opposed to not having the breast.

Tpettis

What about those women out there that are single like me??? I had issues before now I feel like a guy won't even want me. Went on two dates told both guys I had BC and opted for implants thought the dates went good and then nothing from either of them!!!!! I'm so mad that men are vain!!!!!!! Plus I had to deal with egg freezing and I will ultimately have to have in-vitro just to have the child I've wanted since 25 when I found out I was BRCA1 positive. I feel like I'm gonna end up single going to the sperm bank when it's been my dream to get married and have a baby. I watched my mom go thru BC at 35 and then ovarian at 46. My OB/gyn says I need to have my baby as soon as my oncologist gives me permission.

preventbc4

Hi,

Your story sound almost exactly like mine. Im going for another reconstruction soon and on the fence about having them create those skin nipple nubs or just going for the flat 3d tattoos. Any advice?

Also, Did you find a man thats attracted to you with your breath as is? I think I'm really in my own head but Ive had real intimacy issues because of mine.

MommaS

I'm sad too. Surgery dec5, so pretty new into this but don't know how sex life will be or continue. I do have implants and my nipples but they don't feel. I could have chosen conservative surgery bu I don't think I could've dealt with the risk. I don't regret my decision but it does change my sex life