Have you heard of scanxiety?

Scanxiety…?  It’s a term frequently used in the cancer community.  An overwhelming sense of anxiety before a scheduled scan to check if your cancer has come back.  Am I comparing cancer to Endometriosis? No.  I’m simply stealing their well-coined term.

For any of us Endometriosis sufferers who have had any type of relief either from surgery or medicine, there’s always an underlying fear that it will recur at any time.  The doctors tell us there is no cure.  They tell us it will grow back.  There are a few doctors and patients out there who swear that if you remove all of the Endometriosis during an excision surgery, it will not return. But even the best Endo surgeons out there have documented cases of their patients having recurrence of Endo growth.

Perhaps some get lucky and it doesn’t return.  But for many of us, it does.

And for many of us, when that old familiar feeling of pain or other red-flag symptoms come back, there’s that terrifying question, “Is it back already?”  Many people can go several years without a recurrence, sometimes decades.  A good friend of mine has her recurrence every 3-5 years.  And other friends of mine have theirs almost every year like clockwork.  And yet others, others have never felt the relief…even with surgery.

Anyway, I ramble.  What is scanxiety?

Many cancer patients have regularly scheduled 3-6 month imaging studies (xrays, ultrasounds, or MRIs) to determine if their cancer has returned after treatment.  The anxiety leading up to these appointments, and the stress of waiting for the results of the imaging studies, can be devastating.  Many patients even develop a form of PTSD due to these constant pressures.  Dr. Matthew Doolittle of the Memorial Sloan Kettering Cancer Center said, “People with more-advanced disease, more pain, or those who have suffered other types of trauma are at greater risk for developing PTSD symptoms during or after treatment.”

The days and weeks leading up to, and following, an appointment are incredibly stressful and an emotional rollercoaster for Endometriosis sufferers as well.  The pain of the transvaginal ultrasounds, fasting for blood tests, possibly having a fear of needles, the confined and loud space of an MRI machine.  What if the doctors suspect the Endometriosis is back?  Expensive surgeries, stacking medical bills, 3-6 weeks of recovery time, more prescription medication.  The thoughts are endless:

How am I going to pay my bills?

What if I lose my job?

How am I going to care for my family?

How am I going to get through this?

Will it ever stop?

Will it never end?

It’s understandable why every EndoWarrior I personally know goes through scanxiety before an appointment or exam: irritability, fear, depression, anxiety, worry.  And these deep, dark feelings, endless surgeries, and viscous cycle have led several Endometriosis suffers to end their own lives.

So, yes, I’m stealing the term from the cancer community.

But how to handle it?

It may sound cliche, but positive thinking may be the first step!  Dr. Katherine DuHamel of the Memorial Sloan Kettering Cancer Center says, “Telling yourself that it’s only a matter of time before you relapse and other things that paint a worst-case scenario is not uncommon…Such unhelpful thoughts can be identified during cognitive behavioral therapy and the evidence for, and against, these thoughts can be weighed. Patients are asked questions such as, ‘What else can you tell yourself?’ and ‘How else can the situation be interpreted?”

And it has been scientifically proven that stress has an effect on Endometriosis.  So how do we try to reduce our stress levels while suffering from scanxiety?  Or at any point in our lives?  Try these tips:

Breathing: Deep, focused breathing has been shown to reduce anxiety, and calm emotions and thoughts.  There are several techniques for deep breathing, and I personally will begin using the 4-7-8 Technique.

Exercise: Physical exercise pumps up endorphins…the “feel goods.”  It may also help us forget the stresses of the day, shedding calories and stress! A win-win!

Listen to Music: Soothing music can decrease heightened cortisol levels (aaaugh, STRESS!), which may lead to relaxation and less tension.  Also, see if you can bring your personal music player to an appointment or examination.  I do this with my dentist appointments and it really helps.

Massage: Massage has been known to relax muscles, increase endorphin production, ease tension, and relieve headaches.  Massage also releases serotonin and dopamine into the body, which deepen a sense of relaxation and calm.

Meditation: A 5-minute meditation may quickly restore the peace you were feeling prior to the stressful environment.  Just get away for a few minutes in a quiet place. Sit or lay down, close your eyes, take a deep breath, exhale slowly.  Imagine yourself in one of your favorite places, feel the ground beneath your feet, imagine the scents and sounds around you.  Steady your breathing and relax your tense muscles. Let it go, calm down, relax.  Calm, collected, and ready to face what’s next.

Professional Help: If you so desire, seek the advice of a professional, such as a psychologist.  Sometimes it helps to talk to someone, and sometimes it helps to talk to a neutral, unbiased party.

TARP Method: Tune into your body’s signals, triggers, and early warning signs to help realize when your stress levels are rising.  Analyze the source of the stress. Respond by dealing with the cause of your stress, and helping calm its effects on your body (aka calm down). Prevent future stresses by developing an earlier response to stress, calming faster, and even cutting the cause of the out of your life.

Yoga: Yoga not only stretches and maintains a limber body, but also includes breathing exercises which further decrease heightened cortisol levels and helps bring a sense of peace and calm.  However, yoga with Endometriosis can be tricky, based on the placement of adhesions inside the pelvic area or anywhere inside the body. 

For more fantastic tips on dealing with scanxiety, check out the blog by Tori Tomalia, a two-time cancer survivor.  She’s written a blog just for coping with scanxiety identifying her own personal tips and tricks that helped her.

Most importantly, remember that you are not alone.  Talk to your partners.  Talk to your fellow EndoWarriors.  Talk to your doctors.  Reach out for love and comfort and understanding.  This disease already makes us feel broken and alone.  Don’t let the anxiety leading up to appointments and examinations do the same.

Grace, this one’s for you. ❤





Memorial Sloan Kettering Cancer Center

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

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