Before I get into this blog post I want to announce a free, online, 45-minute, Sexuality Support Group for Gynecological & Breast Cancer Patients on Sunday, August 18, noon PSDT.

I’ll be facilitating, but the idea is for us to learn together and support one another! If the idea takes off, this will be a monthly event. Contact me at dr.amymarshsexologist@gmail.com to register.

So very personal

Cancer and sexuality is not a “niche” interest, though it can look that way from the outside. After all, as a sexologist, I have a lot of very particular (and peculiar) interests. But this? It’s incredibly personal. I’m thrown into the thick of it–trying to figure out how to manage and navigate completely uncharted (and often physically painful) terrain, while also nurturing what’s left of my body’s capacity for joy and hope. As a post-surgical patient about to plunge into yet another round of chemotherapy treatments, I have to bring an often chemo-fogged brain to understanding all that I must in the way of exercise advice, nutritional guidelines, compliance, and so on.

And as a sexologist, I want to share what I unearth in the way of resources and helpful information because so far no single website, book, or clinic has everything I need and want to know. And you could be in that position too.

Hunting for pertinent research

For the last several weeks I’ve been collecting abstracts and whole studies (when I can download them for free). It’s clear that researchers have many different ways of defining context(s) and their research questions and methodologies. Human sexual health and behavior, especially when it impacts reproductive organs and (binary) gendered expectations about reproduction, can be incredibly complex.

Unfortunately, most of the studies I’ve found concern themselves with cisgendered women and heterosexual relationships, often with the added elements of child-bearing and child-rearing. It’s enough to make one’s head spin!

So let’s acknowledge, now and in future blog posts, that other people besides cisgendered women and people in heterosexual relationships are affected by these issues, even though I will have to use binary-gendered language to describe various research topics and findings.

Sexuality in the context of “quality of life” (QoL)

For an overall context, I found a lot to value in ‘Sometimes I can’t look in the mirror’: Recognising the importance of the sociocultural context in patient experiences of sexuality, relationships and body image after ovarian cancer, by Boding, et. al, in European Journal of Cancer Care in 2022. This was an online survey study of 98 Australian women over the age of 18.

Here’s how the authors described the themes identified through survey questions and open-ended responses:

“Failure and Loss of Femininity and Womanhood, Internalising Public Perception of Body and Illness and Altered Relationships which comprised two subthemes, Loss of the Sexual Self and Relationship Burden. These themes suggest women view themselves and their relationships in comparison with sociocultural understandings of body normalcy. Women often questioned their self-worth, their relationships and place within society due to changes in fertility, sexuality and bodily functioning.”

(We can imagine a more inclusive “Failure and Loss of Gender Identity and Roles” as a substitution for the first theme.)

The above themes are organized under the umbrella of “Quality of Life,” a concept applied to sexual health, function, and pleasure that is fortunately showing up more and more in the studies I’ve found.

So what ARE the bio-psycho-social sexuality issues facing patients and survivors of ovarian and other gynecological cancers?

Three major aspects of gynecological cancers are (1) the cancer itself, (2) chemotherapy and/or radiation, and (3) surgery. These very physical, biological aspects are combined with the emotional impact of existential crisis and coping with the demands of this new reality, plus familial, social, financial, and other socio-economic factors. And all of these factors affect or bleed into the others. There is no simple compartmentalization. Even so, I’ll attempt to categorize the factors I’ve found in the research literature so far.

An excellent study of the psychosexual morbidity of ovarian cancer patients, by Logue et al, was based on a literature search from ten databases (publications from 2008-2019). It identified 29 publications with combined data from a total of 4,116 patients. The 2020 study found:

“Up to 75% of women with epithelial ovarian cancer reported adverse changes in their sex lives following diagnosis and, of the sexually active, vaginal dryness affected 81–87% and pain 77%. Other prevalent symptoms included: reduced sexual desire and activity, impaired orgasm, diminished perceived body image, and reduced partner intimacy. Psychosexual morbidity represents a significant unmet need for women with epithelial ovarian cancer.”

BIOLOGICAL

Impacts of chemotherapy

Side effects of chemotherapy include hair loss, fatigue, nausea, bone pain, and neuropathy. Also some people report brain fog and memory issues (“chemo brain”).

It can also be a cause of sexual problems. According to this study by Sodeifian, Mokhlesi, & Allameh, “chemotherapy is one of the most common cancer treatments affecting sexual health aspects, such as decreased libido, arousal and orgasm, dyspareunia, dysfunction of the sexual response cycle before puberty, and vulvovaginal atrophy. However, many patients are reluctant to discuss their sexual problems.”

Impacts of “maintenance drugs”

More on post-chemotherapy/post-surgery medications in a future blog.

Impacts of surgery

Gynecological cancer surgeries include (a partial list):

Hysterectomy. From Johns Hopkins website: “Total hysterectomy removes the entire uterus and the cervix (most common type). Partial hysterectomy (also called supracervical hysterectomy) removes only the uterus, leaving behind the cervix (research is ongoing about the risks and benefits of leaving the cervix intact). Radical hysterectomy removes the uterus, cervix and upper part of the vagina (usually for cancer treatment).”

Oophorectomy. (bilateral or unilateral) or salpingo-oophorectomy (removing the fallopian tubes as well as the ovaries).

The Logue (2020) study says: “Physically, ovary removal leads to a drop in circulating estrogen, more profoundly if pre-menopausal at the time of treatment, leading to vaginal atrophy, and reduced circulating testosterone and androstenedione contributing to reduced libido, and reduced peripheral conversion to estrogen. Psychologically, the visual effects of surgery andchemotherapy such as scarring, stomas, and hair loss can affect the woman’s perceived body image, which is associated with psychosexual morbidity.”

Omentectomy: Removal of the omentum, a fatty lining which supports abdominal organs. From cancercenter.com: “An omentectomy is most frequently used in patients with epithelial ovarian cancer. In these cases, the expert performing the surgery should be a surgeon trained in treating ovarian cancer, such as a gynecologic oncologist.”

Debulking, also called Cytoreduction. From cancercenter.com: “The advantage of debulking surgery in advanced cases is that it leaves behind no visible or only small amounts of cancer in the body, which may be more easily treated by chemotherapy. Tumors that are “debulked,” or made smaller, are more vulnerable to chemotherapy. The goal of debulking surgery is to leave behind as little or no cancer if possible.” This is often done in advanced ovarian cancer cases. The surgery may be either a partial omentectomy or a total or supracolic omentectomy.

Removal of secondary tumors.

These surgeries may be performed as laparoscopic, robot-assisted surgeries or as open surgeries. Laparoscopic surgery usually has a shorter recovery time. It takes more time to recover from open surgeries. Some activity restrictions will be in place for as long as 6 to 12 weeks. These restrictions will most likely include lifting over ten pounds (6 weeks) and vaginal penetration (12 weeks), but there may be others.

Surgery is not just a physical experience. The prospect of surgery may be scary and the logistics of lining up post-surgical support may be daunting. Financial impacts can also be enormous. And there is pain.

Early Menopause

This results from removing the ovaries, which make estrogen and progesterone and therefore govern the menstrual cycle. Once the ovaries are removed, menstruation will stop (if it hasn’t already).

Infertility

Hysterectomy: without a uterus, one cannot become pregnant or carry a child. Oophorectomy without hysterectomy: one cannot conceive and carry a pregnancy without the help of a fertility specialist. And even with a specialist, this may not be possible.

Hot Flashes

Also a result of removing the ovaries. More on this in a future blog.

Vaginal Dryness

Also a result of removing the ovaries. Solution: purchase and use good-quality lube for vaginal penetration. (If you use silicone sex toys, make sure you use water-based lube.) More on this in a future blog.

Vaginal and Pelvic Pain

Pain during vaginal intercourse or penetration with a toy (dyspareunia). A result of the surgeries. See a pelvic floor therapist if at all possible! More on this in a future blog.

Diminshed Sex Drive

Also a result of removing the ovaries. There are also psychological, relational, and social aspects to loss of libido and desire. More on this in a future blog.

Orgasm Difficulties

Orgasms may take longer to experience, feel less intense, or may even be “impossible” for some patients, particularly hysterectomy and oopherectomy patients. Much on this in a future blog.

Osteoporosis: Loss of Bone Density

Also a result of removing the ovaries. More on this in a future blog.

Increased Risk of Heart Disease

Also a result of removing the ovaries. More on this in a future blog.

PSYCHOLOGICAL

Body Image

Psychologically there is so much to unpack. Body image, which also includes our perceptions of health and a trust in our own body, has a lot to do with how desirable or desiring we feel. For some, cancer can feel like the ultimate betrayal of bodily trust.

Of course, body image has physical and social aspects. If we’re fatigued or unwell, sexual activities might be the last thing we want to consider. And how we perceive our body’s appearance (and desirability) is often shaped by social factors.

“Perceptions of bodily changes often occur through medicalised perspectives, like sexual dysfunction viewed as the inability to engage in penetrative sex and the cause of subsequent psychological distress (Ussher et al., 2013) rather than considering sociocultural norms as influencing emotional and psychological well-being.” Boding, et. al, 2022

Body image isn’t just about appearance. It also includes other senses like smell, taste, and touch. A person might worry about the effect of chemotherapy on how they smell or taste during sex. Or certain touches might have become painful and the cancer patient may feel “broken” and less confident in their physical responses and capacities.

Hair Loss

This loss is often shrugged aside by others as “it will grow back.” Yes, hopefully it will, eventually.

But hair color, abundance (or lack of it), shape, length, style, etc. is a major physical feature. For many people, how their hair looks is an intrinsic part of their self-image and may be considered (by that person and others) as a measure of their attractiveness. Social beauty standards being what they are, it is probably safe to say this is most starkly apparent for a large percentage of cisgender women and nonbinary femmes.

Sudden and total hair loss due to chemotherapy doesn’t just cause a profound shift in a person’s self image, it also makes that person stand out AS a readily identifiable cancer patient. Like someone with a visibly pregnant belly, the status of a bald or hat-wearing cancer patient (especially one who is presumed to be or perceived as female) suddenly becomes public property. Based on appearance, the cancer patient is now liable to receive unwanted and unsolicited comments, nonverbal communications of pity, disgust, or unacceptibility, and even micro-aggressions. A whole person is suddenly made into a one-dimensional “poster child” for their condition.

This status change can be emotionally disconcerting and socially frustrating, or worse.

Fear

Of death, of pain, of abandonment, of financial ruin, of not being lovable any more, of being a burden to your intimate partner–you name it! A huge topic, particularly when fear intersects sexual health and behavior and impacts intimate relationships.

Grief

As above. And more so.

SOCIAL

Lack of Information and Support for Cancer and Sexuality Issues

Finding and sharing resources and information is a major reason I have started this blog series. I will also create a page on my website that will have a list of resources.

Cancer’s Intersection with Loneliness and Isolation

More on this in a future blog.

Quality of Support from Partners, Friends, Family Members and Community

More on this in a future blog.

Racial, Ethnic, Economic, and Gender Disparities in Access to Medical and Surgical Care

More on this in a future blog.

And yes, there are other issues to add here!

Finally

This overview is likely to receive updates as I learn more about this huge topic and subtopics. However, in my next blog I will focus more on specfic sexual concerns. I promise.

References

Boding, Sally‐Anne, et al. “‘Sometimes I can’t look in the mirror’: Recognising the importance of the sociocultural context in patient experiences of sexuality, relationships and body image after ovarian cancer.” European Journal of Cancer Care 31.6 (2022): e13645.

Logue, Chloe A., et al. “Psychosexual morbidity in women with ovarian cancer: evaluation by germline BRCA gene mutational status.” Sexual Medicine 10.1 (2022): 100465-100465.

Sodeifian, Fatemeh, Aida Mokhlesi, and Farzad Allameh. “Chemotherapy and related female sexual dysfunction: a review of literature.” International Journal of Cancer Management 15.4 (2022).

This blog post also makes use of links and quotes from these websites: Johns Hopkins, Cancercenter.com, Mayo Clinics, and Healthline.

And please do check out the first blog in this series.

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