Blogged while: Multi-tasking like crazy
In June 2016, there were more than 50,000 online conversations about women’s gynecological cancers. September is National Ovarian Cancer Awareness Month, an appropriate time to bring to light the 2,000+ patient conversations around gynecological cancers taking place across social media channels. This blog post specifically examines female patients who are considering or have received surgery for early-stage gynecological cancer, most commonly hysterectomy. Within these posts, I examined how patients undergoing a hysterectomy or related surgery discussed issues around sex, gender, and feminine identity. Narrowing in on about 180 posts from patients discussing a variety of issues I will discuss the major themes of sexuality, self-image, and motherhood.
Sex & Sexuality
Sexuality is an important aspect of gendered identity for hysterectomy patients. Women who have undergone hysterectomies regularly discuss how their sexuality and relationships have changed following the surgery. This discussion includes both physical and emotional elements. Some patients connect decreased libido directly with the hysterectomy:
“After the hysterectomy I received for my cancer, I had no desire for sex whatsoever.”*
These physical issues are often tied to emotional ones. The issue of libido comes up regularly as a concern for these patients, both for their own emotional health as well as the health of their relationship with a partner or husband. When sex drive decreases following surgery, recently operated patients state that they are worried about how their partners will react; those whose husbands are supportive express pleasant surprise that, in spite of a lowered libido, their partners are variously ‘patient,’ ‘understanding,’ and ‘supportive.’ If the relationship is not so healthy, women may alternatively state that their decreased libido led to a decline in the relationship and view the hysterectomy as a contributing factor in this decline:
“When my libido decreased, that’s when we started having issues.”*
For these women, physicality is highly related to emotionality. When the physical aspect of a relationship changes, the emotional aspect of the relationship can come with it.
Motherhood & Fertility
Another issue that arises in these discussions is motherhood, the desire discussed by many women in online forums to have children and care for them. In discussions around gynecological cancers, where removing the tumors can often cause infertility, it makes sense that the desire to live and the desire to procreate come into conflict. Interestingly, it is often in the context of non-fatal conditions such as endometriosis or PCOS that women express relief at surgery and accept that they cannot have children; in these gynecological cancer discussions, what I see frequently is that although the patients understand that it is a choice between losing their own lives and becoming infertile, there remains an immense sadness around the issue.
Although infertility is a physical issue, it becomes part of a highly emotional discussion for patients of gynecological cancers in online forums. A major complaint for patients is that others cannot understand what they’re going through. One woman relates that her husband wants her to stop ‘whining’ about the surgery now that it is over:
“He says I should just get over it and stop worrying now that the tumor is gone […] but infertility is so hard to accept.”*
Women in their 20s and 30s particularly feel isolated in these online discussions, as their friends and significant others cannot understand this sense of loss that they’re experiencing. One patient poses the question,
“How can I be excited at someone else’s pregnancy when I will never have the chance to be pregnant myself?”*
Frequently, these patients state that once the surgery is over and the doctor reports that they can no longer have children, they go through a period of mourning for the children they can no longer have. This feeling of loss can occur whether the patients already have children or not. One patient says,
“I already have my family, but I can’t shake this feeling of losing something.”*
Other patients describe this emotion as ‘devastation,’ ‘depression,’ ‘mourning,’ and even ‘anger.’ Some patients report feeling emotionally empty. Deeply emotional posts describe patients’ thought processes and attempts to cope with infertility; one patient simply states,
“I am not happy. I am not fine.”*
With the onslaught of visual social media including photos on Facebook and Instagram, patients can be reminded about others’ fertility on a regular basis due to photos of babies and status updates from pregnant friends. This can be a tragedy for patients of gynecological cancers who have undergone surgery and who want children but can no longer have them, who go through this period of mourning and express longing for something they can never have. In one online post, a patient addresses her body directly after confronting one of these social media photos:
“I hate you because that woman and I share a very similar scar. We both delivered something from our uterus – but she delivered a beautiful baby. […] What you delivered was a tumor, and when I saw the photo of that tumor, all I saw was a bloody dead lump where a baby could have lived instead.”*
It is not a coincidence, given the close relationship between body and emotions highlighted in the two topics above, that self-image is also an important issue in the discussion of gendered identity for women undergoing surgery for gynecological cancers. In fact, self-perception is a central emotional concern for these patients, given the changes effected by the removal of parts of the female anatomy, including weight gain and scars. Negative emotions that can be reflected in the online conversations include shame, self-hatred, unhappiness; on the other hand, some women make peace with their new image in the mirror and find self-love, agreement, and positivity. These two sides of the scale can often be seen within the same post, as gynecological patients struggle to accept their new bodies as they go through menopause, sometimes years or even decades early.
Many patients express self-consciousness when they look in the mirror, seeing the changes that their bodies have undergone, and some state that they are ‘in tears’ when they look at themselves; one patient says,
“There were times when I would look in the mirror and be completely in tears because of how different I looked: so ugly and fat. My self-esteem took a steep dive. I was just surviving, not living.”*
This is a common topic of discussion for gynecological patients, who feel that their surgery has drastically changed their bodies and has made them unappealing and unlovable.
However, this is not the end of the story; many women recover self-love after several weeks or months following the surgery, and gain a new respect for their bodies as warriors in the battle with cancer. The patient quoted in the paragraph above relates that she recovered from this self-loathing and has become more positive about her body:
“I can say now that I am on the path to living… not just surviving but truly living.”*
The patient who directly addressed her body to discuss infertility apologized for her self-loathing and promised to be more self-validating in the future:
“I promise not to rely on anyone else to validate your beauty and strength. I promise to believe in you.”*
These three concepts of femininity reflect the primary concerns of female patients in their consideration of surgery for gynecological cancers. In defining their gendered identity, these patients focus on sexuality, fertility, and self-perception. All of these issues revolve in some respect around the absence of reproductive organs, which becomes a fundamental issue for women who require surgery to remove cancerous cells and tumors.
These issues are highly relevant to gynecological patients’ lives, and such patient insights can be crucial to learning how to better understand and cater to patient needs. The Internet is a big place, and there are a lot of people talking, but it’s my job to whittle down the noise and reveal the key insights. In a future post, I’ll discuss the gendered identity issues that men with reproductive cancers undergo, and how they overlap with and differ from those experienced by female patients.
With September being recognized as Ovarian Cancer Awareness Month, the takeaway here is to be aware that there are multiple layers to the conversations patients are having. There are complex issues going on under the surface, and in the case of these gynecological patients undergoing surgeries including hysterectomy and oophorectomy, there are issues of gender and identity at play. Bear these in mind when examining and/or engaging in patient conversations, as there is often much more going on under the surface than may be visible at first glance. What these patients undergo with surgery for gynecological cancer is not just a physical process; it is also an emotional and highly personal one as well.
Social Media Research Analyst
*All quotations anonymized for privacy