Sex life after mastectomy, need success stories

November 20, 2016 8:48 AM

NSFW. I had a mastectomy with reconstruction in June, and it appears my ability to have an orgasm went the same way as my breasts. I really need to hear some success stories from women where surgery changed your sexuality, and recommendations/suggestions/anything please.

I'm 30 years old, I'm a BRCA2 mutation carrier, and in June I went ahead with a prophylactic mastectomy with delayed implant reconstruction. So from June through earlier this month, I had tissue expanders in, and I just had the implant exchange surgery a week ago. Yay.

Prior to surgery - my breasts/nipples were extremely sensitive, and a significant part of my sex life. Since the first surgery, basically, I can count the number of orgasms I've really had on, like, one hand? two hands after a table saw accident? This is after a lifetime of it being pretty god damn easy. This is also using a broad definition of "orgasm" because now it feels like this more uncomfortable "ouch" than anything else.

Masturbation sucks. It takes forever now to get my body to respond in the slightest, direct clitoral stimulation or not, my body is just like "whatever", and in that rare instance that it actually goes somewhere, the "orgasm" feels like this aforementioned uncomfortable kind of painful ouch than anything particularly good or fun. Used vibrator yesterday, nothing.

What's funny to me is that I still get (very) wet/lubricated when making out or having sex with this guy I'm seeing, or fantasizing, but otherwise it's zilch if I'm actually trying to stimulate myself directly (or he is). It's like my clitoris went on strike. Him doing oral feels good, until it just hits that brick wall of now-any-stimulation-hurts-in-a-bad-way, precluding orgasm.

speaking of the guy, so I've met a really delightful guy that I'm thoroughly twitterpated about, we've been hanging out for about 3+ months (sexually active in that time). He has been really understanding/respectful/fantastic, and PIV sex feels great!! but I've never in my life had an orgasm from penetrative sex, ever.

This is all making me fairly unhappy, and I would really like to hear from women who feel like they have a success story about surgery changing their sexuality and still making it work, or things they did/tried, especially from anyone who's had a mastectomy, or run into similar issues. I could really use a pep talk here. This was not an anticipated consequence of the surgery.

old throw-away email if you want to use that: [e-mail]

posted by circle_b to Health & Fitness (7 answers total)

Wow, this is a really tough situation.

I do not have experience with cancer or mastectomy, but I'll still offer a few suggestions in hopes that they'll give you some avenues.

One is aasect.org, the American Association of Sex Educators, Counselors, and Therapists. I have to think that if there are experts and helpers in the world about how mastectomy can affect sexual response, they'll know who they are.

Second thing, which at first blush may seem really far out, but please bear with me. Orgasmic Meditation, otherwise known as OM, is a partnered meditation practice centered around stroking a woman's clitoris. The practice is a meditation, which is to say it's not sex or foreplay, and the only goal is for both the stroker and the strokee to feel whatever they feel. Like any meditation practice, this sounds straightforward in a sentence but can be very complex and multilayered in practice. I have known quite a few practitioners and it can be profoundly impactful to peoples lives in general and sexuality in particular. There is an organization/business that teaches/promotes it, which sometimes puts people off around the air of promotion, etc, but you don't need to buy into that part at all. In any event, developing a meditation practice like this which is deeply related to reconnecting with sensation and learnings from that, might be helpful to you.

I'm glad you're taking care of yourself, both in terms of your health and in terms of your pleasure. Best of luck.
posted by Sublimity at 9:01 AM on November 20, 2016 [1 favorite]

circle_b, you're a week out from a 6-month long process that changed part of your body that you use for sex. It makes so much sense to me that you haven't yet adjusted to this change. My primary suggestion is be kind to yourself!!!! and be patient with your body. My secondary suggestions are to ask your breast surgeon if they have any advice or know of any lectures or support groups about sexuality after mastectomy (the breast center at the large hospital I work and am a patient at has them), and to ask your Gyn for the same.
posted by i_am_a_fiesta at 10:41 AM on November 20, 2016 [5 favorites]

Please be patient with yourself. Right now you're in a process of reconnecting to your sexuality without a key component -- of course you're having trouble! But you're not permanently broken, please don't think that. You just need time to learn how your body works now. Your body is still in a state of shock and healing, and this may be your body's way of telling you 'no babies! not now! we're busy with other stuff!' Your motives, I'm sure, are not totally towards pregnancy, but your body may not have gotten that memo yet.

Also, this is anecdata and kind of unrelated, but after a serious trauma I was also unable to orgasm for about 6 months. Nothing was wrong physically, I just had to process the experience and heal from it. It felt like I had to kind of climb back into the experience of my body after shutting it out for so long, if that makes sense.

I'm glad you have a supportive partner. I would suggest some taking orgasm off the table for a month or so, just so you and your partner can learn your body's new stimulation process.

Are they having you take tamoxifen? It's usually only prescribed after breast cancer has been detected, but if you are, reduced sexual response is a known side-effect.
posted by ananci at 11:21 AM on November 20, 2016 [1 favorite]

I was going to ask about tamoxifen too, as I know it's sometimes prescribed to BRCA+ women as a preventative. I had breast cancer last year and have been on tamoxifen since last July. It has definitely had a huge impact.

I didn't have a mastectomy - I had lumpectomy and radiation - but I think the mental aspect of having your breasts become something that can kill you, as opposed to fun and sexy things, cannot be overstated. I still have mine but they are useless to me. I don't even want to think about them in relation to sex, and when my husband touches them it makes me think of cancer, which is not sexy.

I know it's hard not to freak out and worry that your sex life is forever ruined. I've had lots of those freak out moments, particularly during and immediately after surgery and chemo, when things were much worse. But my body did recover and get better. My sex drive and response is still not what it was before this happened to me, but I've found ways to adjust and it's not something I spend a lot of time thinking about or grieving over anymore. I can't offer you specific advice, but I do genuinely believe you'll be okay. Your body has been through hell - surgery and anesthesia and painkillers and all that can wreak longtime havoc on your system, breast-specific issues aside. You may find that once you're through active reconstruction this problem will largely resolve on its own. But please know you aren't alone.
posted by something something at 2:35 PM on November 20, 2016

I had gender reassignment surgery four months ago and I'm just starting to re-learn how to have orgasms. It is pretty common for it to take longer: a lot of post-op trans women say they didn't get there for a year or so. Having a part of your body that's part of your sexual response suddenly feel and work totally differently is really weird and hard to adjust to -- even when (as in our case) the changes are ones you've been hoping for. It is very, very normal for it to take time to work through your feelings and to figure out the logistics of making your body feel good in new ways. But it is also a thing that most of us do manage to figure out. Obviously the details are different in your situation, but I suspect it will also be true for you that it will take time but that you will probably get there.
posted by nebulawindphone at 4:15 PM on November 20, 2016 [1 favorite]

I have not had any cancer or breast surgery. (And I'm sorry you've had to deal with it and wish you the best.) But I have had surgery (gallbladder) and I have a chronic illness, had a few cervical biopsies with healing times, and I might have endometriosis.

I can't IMAGINE even trying to feel sexual a week after surgery. Your body is still healing. It's devoting ALL of it's energy to healing. It's been "healing" and in flux since your first surgery. It can't be bothered for easy sexiness right now. (And anesthesia can have effects on physical sensations following surgery.)

I feel the same way when I have a bad illness day, or bad period cramps or pains. It's like my brain and body forget sex exists. Then, after a long time of not feeling well (say a couple weeks) trying to get back into "sexy mode" takes quite a bit to get my body to respond sometimes even if my brain is TOTALLY into it.

Sex is like a muscle. You just have to be patient and work your sex muscle. Don't get frustrated. Do you have a therapist? Get familiar with your body again, slowly. Try some sexy lingerie. Take some sexy photos. Get your brain into it and don't pressure your body too much.

Getting frustrated or anxious about my body "not working" after a couple weeks of me not feeling well is almost a guarantee to make it all worse because I wasn't out of my head.
posted by Crystalinne at 5:31 PM on November 20, 2016 [1 favorite]

Talk to your doctor about this. Sex is so important for your recovery, and I hope your doctor will be able to give you help or access to resources for sex after cancer. There may be "sex after cancer" workshops at clinics, non-profits or even sex toy shops in your area. There's a lot you can do and like others have said, a week after surgery is so early. (Although I think it's a good sign you're willing and interested in sex a week later).
posted by areaperson at 5:01 AM on November 21, 2016