When You Have Pain “Down There” During Pregnancy …

Imagine for a second what your life would be like without Google (scary thought, isn’t it?). If you’re a university student, you can probably attest that much of your existence relies on Google, the almighty search engine that we use to look up pretty much everything from “restaurants near me”, to song lyrics, to even ourselves (everyone has done it at least once). But, perhaps one of the most common uses of Google is to search our symptoms of something that is ailing us. If you’re like me, you’ve perfected the art of the Internet self-diagnosis. The search starts off innocent enough, but next thing you know, 20 minutes have passed and you’ve spiraled into a black hole and conclude that you may be dying.

For me, sometimes Googling my symptoms helps to alleviate these worries, and I end up feeling better knowing that whatever is afflicting me has also happened to someone else in the past. However, sometimes this fury of searching can also leave me feeling more anxious than when I started. But the bottom line here is that the Google search usually DOES have a possible explanation for our symptoms (even if we don’t like what it has to say), right?

But what if it didn’t? What if you resorted to the Internet to search for a possible explanation for your symptoms, but there was no solution? What if you didn’t see anything come up with your search? What if there was no information on the pain or symptom that you were experiencing? You might think “oh, I’ll just go see my doctor about this and it will be fine”. But what if your doctor also has no explanation for the pain you’re experiencing? What if you are otherwise physically healthy, and they have no explanation for the pain you’re experiencing?

Up until recently, this was the case for women who experienced vulvar and genital pain during pregnancy. If you typed in anything to do with “vulvar/vaginal/genital pain in pregnancy” in Google, you wouldn’t get much that popped up as a result. That’s another scary thought, isn’t it? To be pregnant and experiencing pain and not knowing how or why it’s occurring – not to mention the lack of information on the Internet that could ease your anxieties.

Thankfully, things are changing: there is a lot of work is currently being done to improve our understanding of pain experiences of women during pregnancy, and sexuality during this period more generally. As a part of a larger study at Dalhousie University [3], we wanted to get a snapshot of what women’s pain experiences were like at the half-way mark of their pregnancy (around 5 months gestation). Over 700 women who were pregnant with their first child responded to our survey.

The first question we wanted to answer: how common is genito-pelvic pain and pain during intercourse during pregnancy? * Genito-pelvic pain can be defined as pain experienced in the genital or pelvic region.

  • Out of 712 women, 9.1% were experiencing genito-pelvic pain. The majority of these women reported that their pain began during their pregnancy, and occurred spontaneously during certain daily activities. For women with pelvic pain, it most often occurred while sitting and walking; for women with genital pain, it most often occurred during sexual activities involving penetration.

  • Only 320 women answered our question on pain during intercourse, but of those who did, approximately two-thirds (66%) reported experiencing pain during sexual intercourse. It can be estimated that approximately 7-12% of non-pregnant women experience pain during intercourse [4,5], so the rates that we saw are quite a bit higher than what we would expect the see in the regular population.

Second, we wanted to answer the question of whether certain predictors (like depression or sexual distress) were associated with the presence and intensity of genito-pelvic pain and pain during intercourse.

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  • As outlined in the table above, of the 320 women who answered both measures of genito-pelvic pain and pain during intercourse …

    • Approximately 57% reported pain during intercourse alone

    • Approximately 8% of women reported both pain during intercourse and genito-pelvic pain

    • Approximately 2% of women reported just genito-pelvic pain

    • Approximately 33% of women reported neither type of pain.

    • Women who had higher levels of sexual distress, higher levels of depression, or higher intensity of non genito-pelvic pain were more likely to report pain (either pain during intercourse or genito-pelvic pain)

    • Having greater sexual distress and intensity of non genito-pelvic pain were each linked with higher pain intensity during intercourse

    • Greater intensity of non genito-pelvic pain also predicted (1) experiencing genito-pelvic pain and (2) genito-pelvic pain intensity.

What do these results mean? First of all, only 1/3 of participants in this study did not experience genital or pelvic pain of some sort at the half-way mark of their pregnancy. This seems like a pretty small proportion, doesn’t it? The reassuring aspect of these findings is that if you happen to be experiencing this pain, you are certainly NOT alone! The even better news is that there is preliminary evidence to show that this pain resolves for many people [6]—of course, more research needs to be done to figure out how this happens, and for whom. One thing that you can do to help? Try to find ways to reduce your pain-related anxiety.

There is evidence to suggest that pain-related anxiety (such as fear of pain, and escape/avoidance of activities that may induce pain, etc.) may worsen genito-pelvic pain symptoms in the early postpartum period [6]. If you notice that you’re worrying about painful experiences (both at present and in the future), try to identify the specific negative thoughts surrounding pain that produce anxiety or distress (for example, “the pain is terrible and I think it’s never going to get any better”); once you identify these negative thoughts, try to shift your focus to more positive internal self-statements [7]. Another suggestion is to do your best to learn more about your specific pain condition so that you can reduce the likelihood of distorting your perceptions about your own health [7]. It’s also common to experience sexual distress [8] and concerns in pregnancy [9,10], but this distress may be making your pain worse as well. Similar to what was mentioned above, identifying the specific negative sexual thoughts that are causing you distress and working to reframe these negative thoughts into positive ones may help reduce the impact of this distress on your pain experiences.

Now, these finding may seem a tad bit discouraging but the good news is that researchers out there (including some here in the SexLab) are working hard to better understand the pain experiences and sexual functioning of women during pregnancy and postpartum. Not only that, but we’re also working hard towards putting this research out in the community so that more individuals (who, like me, Google their symptoms) can more easily access the answers to their health-related questions!

Afterthought. I refer to the Internet or Google throughout this post as sources of information, but it’s very important to know where your information comes from in order to make informed judgments on the accuracy and legitimacy of the information you’re consuming. Always pay attention to the author (or authors) of an article, the author(s)’ credibility, the date of the article, the types of sources that the author cites, and the source of the information itself (e.g., institutional or governmental websites, etc.). Consult https://studyclerk.com/blog/media-literacy to learn more!

Kayla Mooney M.Sc. Student (Clinical Psychology)

[1] Bartellas, E., Crane, J. M. G., Daley, M., Bennett, K. A., & Hutches, D. (2000). Sexuality and sexual activity in pregnancy. British Journal of Obstetrics and Gynacology, 107, 964-968. doi: 10.1111/j.1471-0528.2000.tb10397.x [2] Pauleta, J. R., Pereira, N. M., & Graça, L. M. (2010). Sexuality during pregnancy. The Journal of Sexual Medicine, 7, 136-142. doi: 0.1111/j.1743-6109.2009.01538.x [3] Rossi, M., Mooney, K., Chorney, J., George, R., Pukall, C., Snelgrove-Clarke, E., & Rosen, N. O. (in prep.). Prevalence and predictors of dyspareunia and genito-pelvic pain in women 18-24 weeks pregnant. [4] Harlow, B. L., Kunitz, C. G., Nguyen, R. H., Rydell, S. A., Turner, R. M., & Maclehose, R. F. (2014). Prevalence of symptoms consistent with a diagnosis of vulvodynia: Population based estimates from 2 geographical regions. American Journal of Obstetrics and Gynecology, 210, 40.e1-40.e8. doi:10.1016/j.ajog.2013.09.033 [5] Harlow, B. L., Wise, L. A., & Stewart, E. G. (2001). Prevalence and predictors of chronic lower genital tract discomfort. American Journal of Obstetrics and Gynecology, 185, 545-550. doi:10.1067/mob.2001.116748 [6] Glowacka, M., Rosen, N., Chorney, J., Snelgrove-Clarke, E., & George, R. B. (2014). Prevalence and predictors of genito-pelvic pain in pregnancy and postpartum: The prospective impact of fear avoidance. The Journal of Sexual Medicine, 11, 3021-3034. doi: 10.1111/jsm.12675 [7] Gatchel, R. J. & Neblett, R. (2017, April 12). Pain Catastrophizing: What Clinicians Need to Know. Practical Pain Management. Retrieved from https://www.practicalpainmanagement.com/pain/other/co-morbidities/pain-catastrophizing-what-clinicians-need-know [8] Vannier, S. A. & Rosen, N. O. (2017). Sexual distress and sexual problems during pregnancy: Associations with sexual and relationship satisfaction. The Journal of Sexual Medicine. [9] Beveridge, J. K., Vannier, S. A., & Rosen, N. O. (2017). Fear-based reasons for not engaging in sexual activity during pregnancy: Associations with sexual and relationship well-being. Journal of Psychosomatic Obstetrics & Gynecology. doi: 10.1080/0167482X.2017.1312334 [10] Schlagintweit, H., Bailey, K. & Rosen, N. O. (2016). A new baby in the bedroom: Frequency and severity of postpartum sexual concerns and their associations with relationship satisfaction in new parent couples. The Journal of Sexual Medicine. doi:10.1016/j.jsxm.2016.08.006.

“A Truly Invisible Species”: What we know about GBTQ+ prostate cancer patients—and what we don’t!

“If prostate cancer, in general, is off most people’s radar screen, then gay men with prostate cancer are a truly invisible species.” [Vincent & Lowe, 2005, p. 2]

Prostate cancer is the most commonly diagnosed cancer and the third-leading cause of cancer death among Canadian males [1]. Prostate cancer is very treatable, so most individuals diagnosed with prostate cancer survive. This is great news, since it means that most patients live with prostate cancer, and aren’t dying from it. However, this also means that prostate cancer patients live with the many effects of the cancer itself and the side effects of the treatments undertaken. As such, one area of research has focused on the experiences of patients, and how the cancer and its treatments impact their lives. This work has been really useful in terms of creating supports and resources for prostate cancer patients.

But there is a problem: much of the research on prostate cancer patient experiences has been restricted to heterosexual (i.e., straight) men. This means that gay, bisexual, transgender, and queer prostate cancer patients, as well as prostate cancer patients of other sexual orientations and/or gender identities, have largely been left out of previous studies. In fact, from 2000 to 2015, only 30 studies on gay and bisexual prostate cancer patients were published [2]. And while there are likely many similarities between prostate cancer patients of different sexual orientations and gender identities, we obviously can’t assume that their experiences are completely identical.

In fact, the research that has focused specifically on gay and bisexual prostate cancer patients tells us that there are many differences. For one, the sexual side effects of prostate cancer treatment might impact gay and bisexual men differently than heterosexual men. To name one example, firmer erections are required for anal penetration than for vaginal penetration, so treatment-induced erectile difficulties might cause men who typically assume the insertive (or “top”) role in anal intercourse to change sexual roles to being the receptive partner (or “bottom”) [3]. A man’s sexual role can be strongly tied to his identity, so having to switch roles is not necessarily a simple solution to this problem [4; 5; 6].

It’s not just sexual issues that prostate cancer patients have to deal with. A minority of prostate cancer patients report significant depression and/or anxiety [7; 8]. When gay and bisexual prostate cancer patients are compared to previously published data from (heterosexual) prostate cancer patients, they report worse mental health functioning [5]. However, it’s important to note that gay and bisexual men generally tend to report worse mental health functioning than heterosexual men [9]. Still, this difference between heterosexual and gay and bisexual prostate cancer patients shouldn’t be dismissed; worse mental health in prostate cancer patients has been shown to have a negative impact on their quality of life [8]. On the other hand, positive social support, such as from friends and family, has been associated with better mental and physical health-related quality of life [10].

So, even though the research is limited, we know that gay and bisexual prostate cancer patients have unique experiences. In a perfect world, their healthcare providers would address their specific needs and tailor their care to suit them. Unfortunately, not all LGBT (lesbian, gay, bisexual, and transgender) cancer patients choose to disclose their sexual orientation or gender identity to their healthcare providers, and about half of those who do disclose only do it to correct assumptions made by their healthcare providers that they are straight [11]. In other research, many gay and bisexual prostate cancer patients reported that their healthcare professionals were either unable or unwilling to discuss their sexual concerns [12]. Unfortunately, this isn’t limited to gay and bisexual prostate cancer patients; cancer patients in general report unmet needs when it comes to their healthcare providers talking to them about sexuality after cancer [13].

You’ve probably noticed that I’ve spent this entire blog speaking only of gay and bisexual prostate cancer patients. What about prostate cancer patients of other sexual orientations? What about transgender prostate cancer patients? Unfortunately, the research just isn’t there yet. Previous research suggests that prostate cancer is pretty rare in transgender women who have undergone gender affirming care (specifically, the surgical removal of testicles and estrogen therapy), but also possibly more aggressive [14; 15]. But we don’t know anything about their experiences. There are so many questions to answer.

I’m getting ready to launch the study that will serve as the basis of my Master’s thesis, and it’s going to focus on the experiences of prostate cancer patients of all sexual orientations and gender identities, in order to be able to make comparisons between groups. We are the SexLab, so of course I am particularly interested in sexual functioning and sexual and relationship satisfaction in this patient population, but I also want to know about their mental and physical wellbeing, their sense of social support, and their experiences with the healthcare system. As I hope you’ve learned from reading this blog post, there are a lot of unanswered questions when it comes to prostate cancer patients of different sexual orientations and gender identities, and I’m hoping to answer as many of them as I can.

Our study will be launching within the next month. If you were diagnosed with non-metastatic prostate cancer within the past five years and are interested in participating, or you would like more information about the study, please contact us at sex.lab@queensu.ca. If you know someone who might be interested in participating, have them get in touch with us.

Meghan K. McInnis, BScH MSc Student, Clinical Psychology Sexual Health Research Laboratory

  1. Canadian Cancer Society’s Advisory Committee on Cancer Statistics (2017). Canadian cancer statistics 2017. Canadian Cancer Society: Toronto, ON.
  2. Rosser, B. R. S., Merengwa, E., Capistrant, B. D., Iantaffi, A., Kilian, G., Kohli, N., … West, W. (2016). Prostate cancer in gay, bisexual, and other men who have sex with men: A review. LGBT Health, 3(1), 32–41.
  3. Goldstone, S. E. (2005). The ups and downs of gay sex after prostate cancer treatment. Journal of Gay & Lesbian Psychotherapy, 9, 43–55.
  4. Asencio, M., Blank, T., Descartes, L., & Crawford, A. (2009). The prospect of prostate cancer: A challenge for gay men’s sexualities as they age. Sexuality Research and Social Policy, 6(4), 38–51.
  5. Hart, T. L., Coon, D. W., Kowalkowski, M. A, Zhang, K., Hersom, J. I., Goltz, H. H., … Latini, D. M. (2014). Changes in sexual roles and quality of life for gay men after prostate cancer: Challenges for sexual health providers. The Journal of Sexual Medicine, 11, 2308–2317.
  6. Thomas, C., Wootten, A., & Robinson, P. (2013). The experiences of gay and bisexual men diagnosed with prostate cancer: Results from an online focus group. European Journal of Cancer Care, 22(4), 522–529.
  7. Sharpley, C. F., & Christie, D. R. (2007). An analysis of the psychometric profile and frequency of anxiety and depression in Australian men with prostate cancer. PsychoOncology, 16, 660-667.
  8. Punnen, S., Cowan, J. E., Dunn, L. B., Shumay, D. M., Carroll, P. R., & Cooperberg, M. R. (2013). A longitudinal study of anxiety, depression and distress as predictors of sexual and urinary quality of life in men with prostate cancer. British Journal of Urology International, 112(2), E67-E75.
  9. Cochran, S. D., Mays, V. M., & Sullivan, J. G. (2003). Prevalence of mental disorders, psychological distress, and mental health services use among lesbian, gay, and bisexual adults in the United States. Journal of Consulting and Clinical Psychology, 71, 53–61.
  10. Mehnert, A., Lehmann, C., Graefen, M., Huland, H., & Koch, U. (2010). Depression, anxiety, post-traumatic stress disorder and health-related quality of life and its association with social support in ambulatory prostate cancer patients. European Journal of Cancer Care, 19(6), 736–745.
  11. Kamen, C., Smith-Stoner, M., Heckler, C., Flannery, M., & Margolies, L. (2015). Social support, self-rated health, and lesbian, gay, bisexual, and transgender identity disclosure to cancer care providers. Oncology Nursing Forum, 42(1), 44–51.
  12. Rose, D., Ussher, J. M., & Perz, J. (2017). Let’s talk about gay sex: Gay and bisexual men’s sexual communication with healthcare professionals after prostate cancer. European Journal of Cancer Care, 26, e12469.
  13. Gilbert, E., Perz, J., & Ussher, J. M. (2016). Talking about sex with health professionals: The experience of people with cancer and their partners. European Journal of Cancer Care, 25, 280–293.
  14. Gooren, L., & Morgentaler, A. (2014). Prostate cancer incidence in orchidectomised male-to-female transsexual persons treated with oestrogens. Andrologia, 46(10), 1156–1160.
  15. Hoffman, M. A., DeWolf, W. C., & Morgentaler, A. (2000). Is low serum free testosterone a marker for high grade prostate cancer? Journal of Urology, 163, 824-827.