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

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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

 

8 thoughts on “How to you manage? Endometriosis fears, doubts, and uncertainty

  1. Wow. You’ve put it into words perfectly. Ive realised that the hardest realisation for myself and for people around me is: it isnt going away. Embrace the good days. Grit your teeth through the bad. And know at least that there are some ladies who can say: i feel you. I understand.

    Liked by 1 person

  2. Thanks for writing this. I sometimes feel that the fear of the next period may just be adding to the pain. The worry and planning and reading and trying every trick to prevent the pain is exhausting. I’m trying to start and maintain a daily habit of meditation in order to help quiet the fear and anger and hopeless feelings! I also do acupuncture once a week.

    Liked by 1 person

  3. Money & Endometriosis – I completely feel you. This is a tough one, because second guessing your symptoms has a financial consequence. You nailed it “holding vacation & sick days”. The reality is those days are the difference between paying the rent and making the cell phone payment on time. All because of Endometriosis. Hang in there!

    Like

  4. I write, I read, I try to accept.
    Post likes these are what keep me upbeat and connected. I used to be like a scaredy cat and my anxiety would shoot up at the slightest change – I would vehemently deny this! I’m fine I would say whilst poking and prodding. I’m fine whilst my mind mentally Rolodexed the dates …
    How do you cope? I cannot answer as I fear my next pelvic pain, my next bout of insomnia, depression … all I can offer is love and support as sometimes that’s all I need xx

    Liked by 1 person

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