There is nothing like the shock and confusion felt with the words, “I’m sorry, you have cancer.” However, with those words, my journey began.

Following 48 hours of exams, tests and scans, I was diagnosed with non-advanced anal cancer. According to my medical team, my physical response to chemotherapy and radiation treatment was similar to that of other patients, but the sexual health side effects realized after treatment surprised them all. I was told on two separate occasions sexual dysfunction would not be an issue. Once I was cancer-free, that was unfortunately not the case.

Talking with Doctors About Sexual Health After Cancer

As a patient, I wondered how, when and who to approach about the sexual side effects of my treatment. I felt greedy and guilty about not accepting a positive prognosis as “good enough.” It wasn’t clear to me if others had successfully worked through this problem, and if so, where they found helpful resources. I tried everything from creams and moisturizers, surgery and dilation tools, to rehabilitation therapy and pain medication. Nothing helped.

I would spend the next five years searching for a solution to make intercourse with my husband possible again. What I found is that there is a communication gap between providers and patients when it involves sexual health topics. This communication gap leaves patients who have survived their disease alone in the search to survive the sexual health side effects of their treatment.

Why don’t doctors ask the important questions about sexual dysfunction after cancer?

The economics of medicine in terms of time physicians spend with patients, lack of formal training, and concern for patient privacy contribute to this communication gap. Until providers have better screening tools and develop consistent practice behaviors to normalize this topic for patients, millions will continue to suffer in silence.

Though it can feel awkward initiating a discussion about sex in a medical setting, there may be rehabilitative exercises that can be started early to lessen the severity of the long-term sexual effects. If your medical provider has not discussed sexual side effects with you, and you would like to have a conversation with them, the following questions are examples of what can be asked to initiate that discussion.

Questions cancer patients should ask medical providers might include:

  • How long after treatment before I can resume sexual activity?
  • Will there be permanent changes in my sexual health I need to prepare for?
  • What have other patients stated as the short-term and long-term sexual side effects from this type of treatment?
  • Having an Intimate relationship with my partner has gotten more and more difficult since surgery. Who do you recommend I talk to regarding this?
Following my experience with cancer, I made it a goal of mine to help others understand the importance of asking medical providers important, intelligent questions. You can find the complete list of questions to ask medical providers here.

Communication with Our Partners

My husband and I were not given any special recommendations regarding sexual activity, except to go slow, and use vegetable oil as a lubricant. When we attempted intercourse the first time following cancer treatment, the pain was immediate and severe. Assuming my body hadn’t healed completely, we waited two weeks and tried again. The pain was excruciating, leaving small drops of blood on the sheets and tears in my eyes.

Though originally hopeful, my husband eventually felt no desire to be the source of my pain. Our attempts at intercourse ended. His support and concern turned to disappointment, and eventually silence. Without sexual intimacy, we felt less connected to each other, and conversations to address the issues were clumsy. We did, however, slowly begin to have meaningful conversations about sex that helped us a great deal.

The following six tips helped my husband and I communicate through this topic:

  1. Start the conversation outside of the bedroom.
  2. Do not discuss this subject immediately before or following intercourse or sexual activity.
  3. Find one specific topic and focus on resolving that one issue.
  4. Use “I” statements, as opposed to placing blame with “you” statements.
  5. Be positive before embracing negative.
  6. Schedule a time to talk.
Begin a meaningful conversation with your partner about sex after cancer. For more help guiding this conversation read the complete post 6 Tips to Having a Meaningful Conversation about Sex.

After Cancer, Solutions for Sexual Health

Because of my experience with limited resources on sexual health after cancer, I began After Cancer, Solutions for Sexual Health (Link to: http://aftercancer.co), to serve as a resource to help survivors find intimacy again.

Has your relationship changed after cancer?   What challenges do you face on your road to find emotional or physical intimacy? I’d like to hear from you on this topic, answer a question, hear your story or learn from your experience. You can join cancer survivors dealing with the same issues by connecting with me at After Cancer.

Starting emotional and physical intimacy conversations is challenging, but you don’t have to figure this out alone. There are millions of survivors just like us.

Erin Sullivan Wagner After Cancer, Solutions for Sexual Health erin@aftercancer.co