Tamoxifen Turn Off

Tamoxifen has rendered me anorgasmic. Not happy! It’s also doing nothing to help my sleep, as well as giving me a dry fanny and a paunch. Ugh! The Internet and the information sheet in the tamoxifen packet will warn you of the common side effects, such as menopause-like symptoms. The literature on tamoxifen majors on its paradoxical mechanism of action whereby it blocks the effects of oestrogen in breast tissue, thus preventing breast cancer, whilst acting as an oestrogen agonist in the uterus and in bone. However, there is precious little written on its sexual side effects, other than to say that the aromatase inhibitors are worse! I was hopeful to start with that I might be spared these side effects, but after a couple of weeks on the drug there was a distinct change in my ability to “get there”, shall we say! I hesitated before writing this post, as it does expose me rather, but sex is something which we so rarely talk about and I feel that the taboo needs to be broken.

Breast cancer and body image

There are plenty of great blogs detailing the impact of breast cancer on a woman’s body image and sexual desire. I am unusual in the sense that my cancer has not diminished my sex drive one bit, other than to deprive me of one erogenous zone (left nipple). At least I still have one left! I count myself extremely blessed not to have had to go through chemo and radiotherapy so I have only had to recover from surgery and not all of those other indignities. I am very lucky in that my new fake boob looks very symmetrical and very similar to my real one, and my husband still fancies me. He also keeps forgetting that the new boob has no sensation! We have always had a very satisfying sex life and I have every intention of that continuing. I still feel desire, get aroused and want to be intimate as much as I ever did. The trouble is that the tamoxifen has flipped some sort of physiological switch, thus preventing me from “getting to the finish” every single time. I feel that some background is required to help understand where I am coming (or not as the case may be) from.

Let’s talk about sex, baby

I’ve always had a healthy interest in sex. From Judy Bloom’s Forever being passed around class aged 11 (I remember my Dad looking over my shoulder when I was reading it by candlelight during a power cut and exclaiming, “I wish we’d had such educational books when I was your age!”) to discovering The Happy Hooker on my parents’ bookshelf aged 12, I enjoyed a vicarious sex life for many years. Just reading about sex would cause my blood to start flowing into places I had yet to discover, and I’d get a tight feeling in my lower abdomen. As a Christian who didn’t believe in sex before marriage, I didn’t even have a clue what an orgasm was until a friend enlightened me during a game of “truth or dare” in my first week at uni. I wasn’t actually to experience one myself for another 18 months, though not for want of wishing!

My first sexual relationship almost caused me to fail my second year exams, so caught up was I in my newfound experience. I discovered that I was anatomically normal and that my libido was rather high. Trouble was that I still believed that sex before marriage was wrong but I had broken my own rules. My 20s came and went, mostly single. I managed to repress my sexuality more or less successfully. The point I’m trying to make is that it wasn’t until my late 30s that I was able to realise my sensual and sexual potential. I had a disastrous short marriage in my mid thirties, where I can count the number of times we had sex in two years on the fingers of one hand (well, maybe two).

Finally free to enjoy sex!

You can imagine what a revelation it was to me to discover, at the age of 37, that I could find both love and a great sex life with my now husband. What followed was plenty of heartbreak with infertility, but even through that we managed to retain our intimacy. I have written other posts about the devastating impact of childlessness on my life, but one perk of having no little ones around is that you have far more opportunity to have sex whenever you like. Then breast cancer comes along and puts the kibosh on my ability to enjoy one of the pleasures of my childless life. Not amused!

What is tamoxifen doing to me?

With my psychopharmacologist’s hat on, I did a bit of a literature search to try to understand why I can’t orgasm. Believe it or not, no one really understands the neurophysiology of female sexual arousal and orgasm. Now, as well as cancer and being infertile I also have a rather pesky recurrent mental illness which means that I need to take antidepressants long term. Selective serotonin reuptake inhibitors (SSRIs) are notorious for causing sexual dysfunction and the one which I take is no exception. Until I started the tamoxifen the benefits of the SSRI outweighed the downsides as we could still, with a little battery powered help, have a normal sex life. Since the tamoxifen nothing, but nothing works! I have come to the conclusion that there must be some interaction between serotonin and oestrogen which is necessary for the female orgasm pathway to function. Either tamoxifen or the SSRI alone may not be sufficient to kill it dead, but the combination is the nail in the coffin.

What are my options?

I’m planning to try topical oestrogen (safe in breast cancer) to see if it helps. I’m not holding out much hope as I think the effects are in my central nervous system rather than “down there” but it’s worth a try. Failing that I might try reducing my SSRI dose or switching to another antidepressant which has fewer sexual side effects. Inherent in that is the risk of a depressive relapse or winding up with different, but no less troublesome, side effects from the new antidepressant. Trial and error. I could stop the tamoxifen but then will I get cancer in my other breast? Thank you breast cancer for not letting me forget you even though I am cancer free. Oh, and I ran this by my husband before I even thought of publishing it!!

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