Here lately, I am like stuck on this subject…I guess I miss all the feelings and sensations that no longer exist in my body. I wonder if there is any way of regaining what was lost. If I stop taking the Tamoxifen, would I regain my sexual desire?
Sex and intimacy was the furthest thing from my mind when a cancer radiologist told me I had breast cancer needed a mastectomy, but electively chose a bilateral mastectomy, three years ago.
No matter what kind of cancer you have, the surgery and treatment you go through will have a overwhelming effect on all aspects of your life, including your sex life. The changes in your body image to hormonal depletion to amputated bits and pieces, things just don’t quite work the same for many after a cancer diagnosis. But for whatever reason, most of us don’t sit around talking about sex as readily after cancer treatment Aswan did before, when it was normal.
And doctors never bring it up, so neither do the majority of us.
I was told by my Plastic Surgeon that my mastectomy would most likely leave my chest as a dead zone…no nerves, no feeling, no nothing. I’d reached out to other patients in breast cancer groups asking if anyone else felt the way I did. I had no inkling of what I would hear from them. Most breast cancer patients told me they ha no idea this is going to be their reality. I still hear horror stories about women who have mastectomies then turn to their doctors in total bewilderment when their skin and/or nipples remain numb.
Losing my breasts and sensations they use to produce in my body was just the beginning of the end. Tamoxifen pretty much neutered me, stomping out that sweet inferno of desire that once raged within me. It literally took me from wanting sex all the time( I could not get enough once I started) to nothingness. And when I say nothingness, I mean not even a trickle of desire, when before my insides use to throb with desire. My mind wants to feel…my body not so much. I’m sure my oncologist went through all the potential side effects before I started treatment, but all I heard was hot flashes, possibly nausea and weight gain, but I do not remember the word sex ever being mentioned.
Nausea went away…hot flashes come and go but my sexual desire has not come back. Having a man that you have desired in the past make advances and your body doesn’t respond, put you in a place you have a hard time getting out of. Do you know how frustrating and devastating it is to loose your sexual desire?
The sad truth is along with saving your life (knock wood), cancer treatment can squelch your sexual drive, makes sex painful and/or impossible, mess with your ability to have an exasperating orgasm and even renders your private parts numb or dead as a door nail. It’s not a given, it’s a matter of degrees for each of us, but it happens. It is a matter of how our personal chemistry set reacts to what it is put through.
I skipped chemo and radiation that can wreak havoc with the soft, deliciously sensitive parts of your body, damaging the mucous membranes in your mouth, nose, eyes, ears, and yes, vagina, penis and anus. Radiation can also burn your skin, fry your ovaries and sperm and turn soft, sensitive tissue thick and tough. Mine is all caused by anti-hormone treatments, the bane of breast and prostate cancer patients, put a halt on intimacy in about 17 (everything listed above, included) different ways — even cuddling is out when hot flashes make people feel like they’re going to spontaneously combust. And all three reduce blood flow, which keeps our private bits plump and moist and, well, sensational — the very stuff of sex. Without it, these delicate tissues wither.
Cancer cuts us to our sexual quick. Men may struggle with impotence, women may lose their natural lubrication and most everybody’s joy button is turned off, thanks to the physiological, emotional and/or psychological changes wrought by diagnosis and treatment. It’s hard to feel sexy when you’re suddenly wearing surgical drains or a colostomy bag or your prostate meds have given you man boobs.
And surprise! Nobody wants to talk about it: not doctors, not patients, not even their partners. Sex after cancer has become the big pink elephant in the bedroom.
But the inexcusable happens. I read on a breast cancer page on Facebook, one woman said when she brought up lack of libido with her doctors and nurses, they just gave her “a blank stare, like this was just another one of those things I just had to accept.” Any topic relating to sex does seem to be almost taboo for many doctors, maybe because they don’t know what to say.
I remember my oncologist started giving me a list of side effects. Was sexual desire on that list? Nope. He brought up hot flashes when I started tamoxifen, but he didn’t say that as soon as I started taking the estrogen-blocking drug, I felt like my sexual antenna had been snapped clean off. If men were putting out signals, I was no longer able to read them; it was like everyone was suddenly speaking a language I had somehow forgotten. Granted, I was headed in that direction anyway (being 54), but there’s a big difference between easing into menopause and hitting it like a brick wall at 60 miles an hour. I talked with a 20-something woman who’d gone throug oophorectomy and within days is rocking night sweats, vaginal dryness and the sex drive of a 75-year-old.
Understandably, not having a libido and missing bits and pieces has made marriage challenging, but I’ve also got a husband with prostate issues caused by his lymphoma. Exercising and working constantly can be a wonderful distraction. For a time
I read a survey on the private Facebook group Beyond the Pink Moon prompted a slew of anecdotes from breast and ovarian cancer patients. While some received great proactive care or had few side effects, many more talked of dismissive doctors, baffled partners and their frustration over a new normal that was surprisingly asexual.
One patient, thrown into “chemopause” when she started treatment at age 39, put it this way: “I’d only been married for two years when suddenly I was post-menopausal, fat, bald, had a dented boob, no libido and a painful vagina. It really sucks for everyone. I wish people talked about this more! My doctor didn’t tell me about anything.”
But doctors aren’t the only ones who don’t talk about cancer’s sexual aftermath. Patients and their partners often don’t discuss it either. Here is where part of the problem lies.
Sexual desire is only one of the reasons we women choose to be sexually intimate. Intimacy is a way of showing our partner that we love and desire them, to feel close to or loved by our partner, getting back a sense of normality, to release tension, or to give or receive comfort.
This changes in most of us after treatment. You may want less sexual contact because of the side effects of treatment, prolonged fatigue, changes to your body and confidence about how you look, the stress of his real feelings relating to your disfigured body, or because you can’t concentrate on anything other than your diagnosis and treatment.
Even if your sexual activity decreased or stopped completely during and after your treatment, you may want to maintain a level of closeness with your partner, if you have one. You may not feel like having sex, but you may be happy holding hands, hugging, kissing or finding your own ways of being intimate. Sexual activity can also include touch and other signs of affection that don’t always lead to oral or full sex, but still result in pleasure.
One woman, on a private Facebook page for breast cancer patients, mentioned when you are ready to increase or resume sexual activity, you may want to make some time specifically for you and your partner, free from distractions. It may help to consider what you and your partner now expect from intimacy and sex and explore new ways of sharing sexual pleasure. Try not to compare things now to how they were before you were diagnosed with breast cancer. It can take time and patience to adapt to the changes resulting from breast cancer.
Another woman stated, sensual and genital touching, with a partner and on your own, can help remove anxiety associated with sex and can be a helpful starting point for people resuming sexual activity. If you have a partner you can share your discoveries with them to make sex as fulfilling as possible. Using a vaginal lubricant or moisturizer on a regular basis will ease vaginal dryness and help prevent pain.
Taking things slowly at first may help. Think about what kind of level of intimacy you feel comfortable with and how much energy you have. There may be practical things to consider, such as taking pain relief if necessary.