Look, Ma! No Libido!

This is a delicate issue that isn’t talked about enough. It’s time we brought it out into the open.

Based on the reactions that I’ve received from some health professionals, I believe that loss of libido is a highly underreported side effect of aromatase inhibitors, medications that are prescribed to suppress estrogen production in women who have or have had hormone receptor-positive breast cancer; aromatase inhibitors are generally given only to postmenopausal women. Sure, low libido is listed as a possible side effect on the informational insert that you get with the pill bottle, but its mention feels like an afterthought. The reality is, AROMATASE INHIBITORS STOMP OUT YOUR FREAKIN’ LIBIDO.

Why don’t we talk about this more? This may be due to the average age at diagnosis of breast cancer being the mid-60s, give or take. I’m willing to wager that many women of this age don’t feel very comfortable discussing intimate details of their personal life with (especially male) oncologists.

Couple that with the fact that as much as we’re trying to change as a society, postmenopausal women are still not valued very highly. Youth equates to beauty, and women continue to be judged by their appearance. Even the inhabitant of the White House has reflected the notion that an “older” woman wouldn’t be a fit companion for a high-powered man, presumably because he deserves “better”.

So let me stress, everyone deserves the opportunity to engage in meaningful intimate relationships. As we get older, sexual intimacy may not have the same prominence in our interactions, but it is still an important part of bonding.

This is a perfect example of a “quality-of-life” issue. It can’t be measured by a laboratory test, but it’s something very valuable. When the medical profession obsesses about breast cancer survival rates, and when the pharmaceutical industry develops even more-effective medications, those lives saved can be counted as numbers. But sadly, a drop in desire for intimacy, or a similar quality-of-life marker, can’t be measured in the same way and, therefore, doesn’t bear the same weight in decision-making.

Loss of libido can lead to a decrease in perceived quality-of-life

It rankles me when some of these complicated low-hormone effects experienced by women taking aromatase inhibitors are written off as simply symptoms of natural menopause, as if the cancer survivor is making a big ado about nothing. As someone who was premenopausal when originally diagnosed with breast cancer, and then chemically forced through menopause via chemotherapy and tamoxifen, I can assure you, none of this is what my body would “normally” be doing. The change from what I was to what I am is really striking.

I often think, if a medication could reduce the risk of cancer, but you would have to sacrifice your left arm for it to work, it probably wouldn’t sell well. But if the cost weighs heavily on quality-of-life, taking a toll on intimate relationships, that’s perfectly acceptable? Women who stop aromatase inhibitors are called “non-compliant”, as if they’re foolish and don’t know what’s good for them. But maybe doctors need to consider more than just statistics when it comes to treatment recommendations.

So why aren’t we forcing this conversation with more medical professionals? It’s easy to write prescriptions for medications. It’s much more uncomfortable to navigate the complexities of how intimacy suffers from them. The level of detriment will differ from person to person, as will the value of an intimate experience. While oncologists work to improve the length of our lives, as cancer survivors we need to apply pressure in the other direction, to make sure that their decisions are also informed by the quality of our lives.

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It’s important to note that while libido takes a huge hit from hormone-suppressing medications, it’s not even the main reason women stop aromatase inhibitors. There are other side effects that make the medicines difficult to continue. If you are having troublesome side effects, then tell your doctor as soon as possible. If your doctor doesn’t listen and doesn’t offer ways of alleviating your complaints, it’s time to find another doctor.

Invisible Effects: Libido, Where Art Thou?

I was warned about this. I mean, where do you want to start counting the reasons for libido to take a hike? Anxiety of a cancer diagnosis, fear of losing breasts (the societal hallmarks of femininity), chemotherapy (which pretty much kills everything), tamoxifen (blocks estrogen, so there go the hormones)…

Out of all the things touched by breast cancer and its treatment, this is one of the most personal that not only affects the patient but also the one you love, because it throws a monkey wrench into your relationship. As with many of these “invisible effects” of cancer, this one is not discussed enough, but really should be.

A marriage that is strong should survive this. A marriage that is new or rocky may take more damage. Married your wife mainly because she had long blonde hair, lovely breasts and looked good in your Porsche? Uh-oh. Stories circulate about the high percentage of divorces that result from lack of adherence to the “in sickness and in health” part of marriage vows. I’ve read that those statistics are inflated, and yet, it’s hard to ignore confirmed instances of, “he didn’t find me attractive anymore,” or “she no longer wanted to have sex with me.”

Emotional isolation is a real possibility following cancer treatment if you’re not communicating effectively with your significant other.

In my experience, all the effects of cancer dropped onto your libido won’t necessarily squash it into oblivion. But they do add a degree of difficulty in maintaining intimacy. There is nothing normal about having cancer, and so it’s not surprising that it wrings the “normal” out of a marriage. Communication is critical, and if things are going to break down, I think that’s where it’ll happen.

It’s not that there wasn’t desire throughout my cancer treatment. It’s that it was hard to Tetris sex into the chemo schedule, when I was dead tired and feeling like the lining of my GI tract had sloughed off. Hubby was taking care of the kids and I was lucky if I could make it to the toilet by myself. Perhaps desire was there, but any available energy was better utilized for self-care.

Chemotherapy left me feeling very “neuter”, in that gray area between female and male. Being scrawny and bald didn’t help. I didn’t look feminine and felt even less so. My reality was fuzzy, as if I had one foot in this world and one in the next, which wasn’t the greatest recipe for firing up desire. We went through about a year of unintentional celibacy and that took a lot of discussion to patch up.

Now in survivorship, sexual intimacy has taken a backseat to the rest of life. I mean, I’m still alive, so I’d better make the most of it, and languishing in bed is not where I want to be. I’ve spent enough time supine. Weekdays I need to get the kids ready for school and get myself to work. On weekend mornings, there are workouts to do, posts to write, meditations to finish, coffee to brew. If there are insufficient hormones to drive me into the arms of my beloved, then he’s left to get a few extra hours of sleep while I get on with life. Once in a while, we reconnect, but we’re behind the curve on this.

At the same time, intimacy is an inextricable part of a healthy long-term relationship. I am not giving up on finding my mojo again, but as with everything in cancer recovery, it’s going to take time.