How to you manage? Endometriosis fears, doubts, and uncertainty

causes

So, my last period was severely painful (the worst since my 2016 surgery), but I’m trying to remain positive about it.  I missed a day from work, stayed in bed, and popped NSAIDs.  I suffered through another two days at work, still on NSAIDs.  The rest of my bleeding days were maintained by Ibuprofen.  It may have been stress-related: walk planning; wedding planning.  You know: stressful things were afoot in March and April.

But what do you do when the doubts creep in?  When symptoms begin to rear their ugly heads?  When your back begins to ache.  It hurts to poop again.  Or worse: pee.  When the cramps set in – when they force you to the floor, squeezing your stomach tightly – hugging yourself to death.  When you’re forced to take a day off of work or cancel plans to lie in bed, medicated and useless.  When you dread the start of your next period…mine is supposedly gonna show up sometime next week.

Or when not on your period and those little pains and discomforts visit for a few minutes near your belly button, your hip, your bowel, your back.  Sharp pains that last a few seconds to several minutes, at no fault of your own.

You’re eating well.  You’ve changed your diet and lifestyle.  Your minding your body.  You’re not overdoing things.  You’ve had excision surgeries.  You follow the published studies and read the books.  You surround yourselves with women who know what you’re going through, and have the support of friends and loved ones.

In the meantime, you hoard your sick time and vacation days.  You’re fearful to plan extended trips, long weekends, or days off because you may need those days for a future recovery.  A prisoner to your own body – unable to truly plan things to go out and enjoy – those valuable days off of work or school and money spent on vacations may be needed for surgeries looming in the distance.

Yet…what do you do when those whispers and fears creep up from the depths?  You hear stories of women who have had complete relief after their excision surgeries; yet others (some who have even seen “Endo Specialists”) continue to suffer.  And some EndoSisters have a return of symptoms even weeks after their surgeries.  Others go a few years without needing another.

“Is it my Endometriosis?”

“Is it adhesions?”

“Is it something else?”

“Do I just need to fart?”

“Do I need another surgery already?”

“How many surgeries are in my future?”

and…”Am I just being paranoid?”

Each of these are valid questions that fly through my mind.  Each I try to smoosh down with a “it’s too soon to tell” or “wait until your next period to see how it is”…It could be *anything* – it may not necessarily be Endometriosis.  But it’s the first thought that comes to mind.

Do you feel the same way?  Do these doubts creep in?  What do you do to stay sane?  To not give up and cry?  Or to not be furious at an illness you truly have no control over?

I breathe.  I write things down.  I try to let them go.  There’s nothing I can do about it right now…they are just words.

Yeah, I say that – but the fears and doubts still exist.  They still linger, floating at the back of my consciousness.  I still want to cry from time to time because of this “new me” and my inability to live as carefree, outgoing, and demanding as I used to.

How do you manage?  Drop me (and all of us in the same boat reading this today) a comment below.

Lisa

 

An alternative to Lupron Depot, Letrozole, or Danazol?

Needle for Lupron Depot injection

The Journal of Restorative Medicine has published an article by Dr. Edward Lichen in their December 2016 compilation about non-surgical treatment of Endometriosis.  You can read the article, in it’s entirety, by clicking on the link under “Resources,” but I wanted to give a brief overview of my interpretation:

Causation:

  • Causation continues to be a mystery.  An overview of the nine theories of causation is given.
  • DNA research is ongoing.
  • Estrogen plays a role.  Many women with Endometriosis cannot opt for estrogen replacement therapy (even if post-menopausal) due to high recurrence rates of estrogen stimulation.
  • Xenoestrogens, dioxins, and endocrine disruptors increase inflammation and can cause Endometriosis to develop/recur.

Recurrence After Surgery:

  • There’s a 10% recurrence rate in less-severe Endometriosis.
  • There’s a 62% recurrence rate in women with severe Endometriosis who still have their ovaries.  Keeping the ovaries may lead to a 6 times greater risk of recurrent pain and an 8 times greater risk of recurrent surgery.
  • 20%-40% of women who have had surgery continue to suffer from residual pain.
  • 3.7% of women who undergo a hysterectomy and/or oophorectomy have have a recurrence of Endometriosis.

Drugs:

  • The ideal pharmaceutical treatment of Endometriosis has yet to be developed.
  • Lupron Depot, and other similar GnRH agonists, continue to remain the preferred method of symptom suppression, regardless of the side effects.
  • Aromatase inhibotors, such as Letrozole, also have similar side effects and symptom relief as Lupron Depot.
  • Danazol, a synthetic steroid, is the only alternative to GnRH agonists which offers similar symptom relief with fewer side effects.
  • The use of add-back estrogen sometimes offers little relief from the side effects.
  • Failure of these treatments often leads to surgery, hysterectomies, and oophorectomies.
  • A drug combination of anabolic steroids, Nandrolone and Stanozolol, shows similar symptom suppression without the side effects of Lupron Depot or Danazol.  A case study of one woman treating with both drugs has had symptom suppression and very few side effects over an eight-year period. (See US Doctor abstract under Resources).

What will you do with this new information?  I may talk to my doctor about the steroids combo if my pain returns full-force…but only after doing my own research about the side effects one can expect from that cocktail!

(Updated March 27, 2019)

Resources:

Journal of Restorative Medicine – (Article; Dec. 2016) Paradigm Shift: The Realization of New Medical Alternatives to Surgery for Endometriosis

US Doctor – (Poster; 2014) Novel Medical Endometriosis Protocol Offers Alternative to TAH BSO and Hemicolectomy in Confirmed Stage IV Disease

~ 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

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 EndoSisters 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 women 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 EndoSister 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 Endometiorisis 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 (read more here).  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 (you can read more about it here).

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 for women with Endometriosis can be tricky, based on the placement of adhesions inside the pelvic area or anywhere inside the body.  Melissa Turner and Allannah Law have developed a yoga program that is intended to ease any adhesion-stress and help those who suffer from Endometriosis.  You can view her page here.

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 (click here) 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 EndoSisters.  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. ❤

Yours,

Lisa

Resources:

CureToday.com

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