Intimacy and a Brain or Spinal Cord Tumor Diagnosis

— Categories: Ependymoma Community     Posted on July 21, 2022

A rare disease diagnosis is isolating and impacts so many areas of life including the taboo subject of self-image and sexuality. After all, there may be no other factor as important in the ‘quality of life’ discussion as intimacy.

Yet, patients and doctors tend to avoid the topic. Even healthy, fully functioning people find it uncomfortable to talk to doctors and therapists about libido, intercourse, and intimacy. 

Adding the many complications of a brain tumor to such a taboo topic makes a tough situation worse. There is insufficient research on which areas of the brain and spine control sexual emotions, triggers, and function, so being definitive or conclusive about sexual deficits from a brain or spinal cord tumor diagnosis is an inexact science at best. 

And the challenges above don’t even address the emotional aspects involved.

Having established that it’s an uncomfortable subject as well as not understood, why are we talking about it? Because it’s important to patients. It’s important to partners. It’s important to psychological well-being, and I’ve heard from enough folks who have some manner of difficulty post-surgery for me to believe that there is a correlation. 

In my mind, you can’t impact the area that controls something without causing downstream effects. That might not be scientific enough for a research paper, but it’s enough to warrant this article. 

Now that I've established that the topic is both unknown to your doctor and uncomfortable to discuss with your partner, I’ll remove a barrier and attempt to legitimize the topic. Besides, someone has to go first….

When my first ependymoma was discovered, it extended from my ventricles and wrapped around my brain stem. It was successfully removed, but it wreaked havoc on the way out. Among my many deficits, my brain “forgot” how to breathe and swallow. At a macro level, that’s two functions vital to life, but from a micro aspect, they’re also vital to sexual function and intimacy. 

Think of it this way, how are you supposed to be horizontal and kiss someone if you can’t manage saliva when upright? Without being overly graphic, that scratches the surface of how surgical deficits impact physical function.

In addition to the many physical deficits, there were plenty of psychological challenges too. I was thirty-something years old and completely lost my libido. Was it a lack of sexual desire because a connection in my brain was interrupted? Was it actually a lack of confidence stemming from physical deficits? Or was a lack of libido due to underlying emotional trauma? Which medical professionals should I talk to if I experience an issue?

There are no good answers, nor is there a clear understanding of the topics involved.


The National Cancer Institute published a resource for cancer patients that explores important topics related to self-image and sexuality. Although it is not disease-specific, it offers helpful insight into body changes during and after treatment, changes in sex life, and dating for cancer survivors and care partners. A common theme throughout the article is communication with both your medical team and your partner. This quote stood out, “Even though you may feel awkward, let your doctor or nurse know if you're having problems with intimacy or sex.” Most people are not comfortable talking about this important issue, so you aren’t alone, but there might be help if you are willing to have the discussion. 

There is no debate that a brain or spinal cord tumor diagnosis and treatment has a direct impact on your nervous system. Nor is there doubt that a vast array of issues could arise because of this direct neurological impact. 

Neuro-oncologist Dr. Erin Dunbar from the Piedmont Atlanta Hospital and member of the Brain Tumor Trials Collaborative commented, “Sexual function and intimacy have an important role in discussions on quality of life. Given the impacts that treatment can have across vital areas, patients and their doctors need to closely monitor changes and openly discuss them.”

I absolutely agree with Dr. Dunbar and hope that patients will engage in discussing this issue with their medical team. If the idea of talking about sex remains uncomfortable, consider easing into a discussion by starting with asking generalized questions, such as: For my tumor type and location, what are the expected side effects related to intimacy? Are there medications available if deficits in sexual function persist?

Libido, intercourse, and intimacy are a complex, interwoven web involving many areas of the brain. Even though there is little clarity on how a brain or spinal cord tumor can impact those interconnected functions, there is little doubt that it does. Without a complete understanding of the subject, the best approach is to engage in open, forthright discussions with your partner and your doctors. 

When it comes to the topic of sex, getting help can be uncomfortable or even embarrassing. But getting help is far preferable to damage done to your self-image and quality of life. Start a discussion today!

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