Meet Gillian, Patient Educator on a Mission to Tell you “You are Not Alone”

 

WomanLab is on a mission to share truths about sex and cancer. One basic truth we have to share is that you are not alone. There are advocates, health professionals, and researchers who work directly for and with women whose sexual function has been affected by cancer.

Meet Gillian, a WomanLab scientist and patient educator working in the Program in Integrative Sexual Medicine (PRISM) clinic since 2014.

KP: Can you describe your role as a patient educator for people who may not have heard of this role before?

GF: One of the core responsibilities of the patient educator is to share basic, non-medical information on sexual function. Despite what the title may imply, patient educators do much more than provide education to patients. In order to uphold the mission of PRISM, this role is designed to support the operational, clinical, research and engagement needs of the program.

Because of the unique structure of the clinic, we have a lot of “stuff” that we carry with us into the exam room: dilators, a pelvic model to help educate women on basic anatomy, a hand mirror and a huge binder with various resources for our patients. It’s a little comical when you see us walking around the clinic.

As a patient educator, primarily what we do is listen. Common concerns we hear include painful sexual intercourse and decreased desire for intimacy. Dr. Lindau elicits the patient’s cancer history, their sexual function history, why they’re here to see us and conducts a specialized physical examination. All the while, the patient educator is listening along and curating resources from our binder to share during the patient education session that would be helpful to the specific concerns of the patient. This includes things like improving sleep quality, vaginal hygiene, pelvic floor muscle information and much more. The education session is 5-10 minutes at the end of every visit.

KP: What kinds of questions do women have during the education session?

GF: I would say that a lot of the questions I get as a patient educator are logistical questions. A patient may come to me and say, “Dr. Lindau recommended that I get a dilator in this size. [We provide a handout with actual measurements that reflect the measurements of a dilator that we used in clinic] I’m having trouble finding what you recommended; can you send me a few links to examples of what I can use on Amazon?”

KP: What other types of questions do you hear from women during the patient education session?

GF: Let’s say we’ve recommended that a patient use a vaginal moisturizer or a lubricant to make intercourse more comfortable. Maybe they go home and try it and they feel like it’s not working or they have questions. They might mention something like, “I used [the lubricant] this way and I feel like I’m not getting benefit.” So I am adding clarity in terms of—literally how do you use a lubricant during sexual activity. We get a lot of those type of questions.

We also get questions that are more abstract. Things like:

“Am I ever going to be able to have sex with my partner again?”

“Will it always feel this way?”

“What can I do to improve my sex life?”

“How do I compare to other women?”

We use validated survey tools to objectively assess a patient’s sexual function (e.g. libido, pain, arousal, distress). This allows us to track sexual function over time. As a patient educator, I walk through the responses with patients and track progress from visit to visit. This way we can say, “look at the improvement in X since last time” or “these responses seem to resonate with the struggles you describe.”

Many women are interested to know things like “How did I score?” There is no “right” answer to that. Even for someone without a history of cancer, it is reasonable to experience sexual concerns or distress. I help our patients to understand where they are and where they can expect to go with the treatment plan. It’s definitely powerful to be able to show patients their objective improvement.

KP: It sounds like there are many different factors that can affect sexual function that I would have never thought of, for example sleep quality.

GF: Yes, there are many ways that all of us can improve our sexual function and learning about those things before disease sets in can really help to set a good baseline of “okay this is what good sexual function is for me.”

KP: I’m wondering, with all of the experience you have had meeting a diverse array of women with cancer—what advice would you give to a lay person on the best way to support someone they know that has cancer and/or sexual dysfunction?

GF: One thing that we frequently share with patients is that this clinic for sexual function and cancer wouldn’t exist if it wasn’t a problem that a lot of people have. I think that information can be especially helpful for patients who may be less comfortable or have never talked about their sexual issues with anyone before. We hear it every day.

KP: Can you tell us about an experience with a patient that is particularly noteworthy?

GF: We once had a patient who had a history of cancer, was in her 70’s and had never had an orgasm. Long story short, after coming in to see us, she had her first orgasm. She was super happy to share that with us. We all high-fived—Dr. Lindau, the patient and the patient educators. It was a really happy moment. It’s never too late to get help or to focus on something that’s important to you.

KP: Definitely, I love that. One last question. What is one thing you want all women to know about sex and cancer?

GF: I think that every woman should know basic things about:

•          vaginal hygiene
•          lubricants and moisturizers
•          good helpful resources to read to self-educate
•          10 questions you should always ask your doctor

Yes, some people would benefit from seeing a specialist, like Dr. Lindau, but there is also a lot that you can do right now to improve your sexual function.

The other thing I would say every woman needs to know is that even though it’s really hard—by sharing what you are going through with someone, things can get better. Sharing your story can help other people share their story and get help too.

WomanLab is your resource for trustworthy information about self-care tips and resources that women can use to address changes to their sexual function. There are many strategies you can try at home! If you’d like to find a provider near you who specializes in treating sexual dysfunction, visit the Scientific Network on Female Sexual Health and Cancer’s “Find a Provider” page.

For more information on our PRISM clinic, visit our website here.

*This interview has been condensed and edited*