When Does Endo End?

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I hate endometriosis.

I’m writing this post at the end of an exceptionally bad cycle.  Except this cycle, and the one before it—and the one before that—were all exceptionally bad.  Worse, in fact, than the usual degree of bad.  Something is wrong in my body, specifically my uterus and hormones, I know it in my heart and I know it in the symptoms that manifest.  Yet every doctor I visit does nothing but send me on my way with words of regret that there’s nothing they can do.

What constitutes a cycle being “bad” are my ovarian pain levels, the number of days of irregular bleeding, and the amount of cramping.  This cycle I began bleeding 4DPO, or CD17.  Last cycle I began bleeding 2DPO, or CD15.  I bleed daily throughout the remainder of my cycle.  Then I get my period, which is a different kind of bleeding.  Finally, the bleeding ends.  But the ovarian pain?  It doesn’t end.  Ever… never.  EVER.  After a new cycle, the cramps resume at ovulation and I continue cramping the rest of my cycle until approximately CD2.  Irregular bleeding has been going on for two years now.  Ovarian pain has been nonstop for more than six.

All of these factors cause Jake and my love life to take a serious nosedive.  We’re fortunate if we can have sex ten days out of any given cycle.  Once the bleeding and pain begin, we have to kiss sex goodbye.  I hate that not only can I not provide him children, I also have to deprive him in this way.  It’s not fair that this affects him too.  My feelings of failure mount.

The level to which endometriosis is beginning to affect new aspects of my life is causing me emotional pain.  I feel defeated and hopeless more often than not.  I find myself retreating inwardly in ways I can’t describe.  Normally I can tough it out.  But I’m getting beat here: beat by this disease, beat by this pain, and beat by the knowledge that I have no control over any of it.  The white flag of surrender is so close; it’d be so easy to wave it and cry uncle.

I feel desperate for relief.  I’m endlessly seeking a reprieve, but it’s elusive.  Pain meds work only for the short term.  A hysterectomy is not an actual solution.  Docs tout hysterectomy as a “fix” only because the the almighty dollar reigns.  Birth control pills for someone who’s TTC is the most laughable solution I’ve heard.  (As an aside, why on earth would I feed my body estrogen [BCP] to help tame a disease that feeds off of estrogen?)  There is no answer to endo, and it angers and frustrates me to the point where I could scream.  I feel like I’m shaking my fist against the wind, one tiny sliver of resistance among a storm of catastrophic proportions.

The struggle is wearying.  Slowly, systematically I’m wearing down.  Yes, things could be worse, much worse; I’m aware of that.  But just because the struggle I’m facing isn’t as grievous as it could be doesn’t mean it’s still not a real struggle.  I cry because I just want the pain to end, the bleeding to end, and—sometimes—even the TTC to end.

The Lord knows that I’ve prayed for healing.  I’ve gone to healing rooms for prayer and to the alter at church services to receive prayer from others.  I’ve believed, stood firm when it seemed bleak.  Yet I also know that I live in a human body that’s subject to aches and pains and problems.  Faith isn’t a magic cure-all to make our ills disappear.  Faith doesn’t make the daily reality of pain and the symptoms any less real.  I wish I knew where the balances lies in my beliefs vs. the medial decisions I have to make.

Even though I know it’s not a cure, I find myself tentatively navigating the waters of having a hysterectomy.  The prospect of no more ovary to hurt and no more uterus to cramp and bleed is like a ray of sunshine in an otherwise gray sky.  Long-term hormone replacement therapy, increased cancer and dementia risks, and loss of libido aren’t thrilling prospects.  But I wonder if they’d be outweighed by the years of pain and bleeding relief I’d find in between.  I can’t believe I’ve reached this point, because I’ve always been so anti-hysterectomy.  But anymore I find myself slowly drawn to the idea.

Of course hysterectomy = no baby.  I guess I have to keep holding out for that.  For awhile at least.

Sorry for the negative post today, but I just have to be real.

 

 

 

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All’s Quiet on the Fertility Front

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Another month-long delay on updating this blog?  You guys are probably used to that by now, I’m hoping.  I’m such an unreliable blogger.  Really, there just hasn’t been much to say on the fertility front.  Here’s some mini highlights to tide you over though.

First, in an act of age-related desperation, I caved and purchased a fertility monitor. Well, a used one that is.  And before anyone “Ewwws!” me, the monitor was used one time, four years ago so c’mon now.  Besides, it’s not like I’m going to be licking the thing.  Even though urine is sterile, I still disinfected the crap out of the machine with rubbing alcohol as soon as I opened the package.  In its user manual, Clearblue “strongly recommends” that women not sell their used monitors, but…. psssssh…  I know corporate greed when I see it.

I spent $80 for the monitor itself, plus an extra $20 for three months’ worth of testing sticks. Thank you, Ebay, for the cheap deals!  Straight retail would’ve cost me $150 for the monitor and another $50 for the test sticks.  I was pretty stoked to save a few bucks while simultaneously dropping $100 for a machine that tells me when to have sex.  ‘Course I can’t actually use the monitor until my next CD1.  Update to follow on how it works!

Also, somewhere between now and my last post I turned 36.  *gulp*  That may have had something a lot to do with buying the fertility monitor.  The feeling of not being able to afford any more missed cycles is real.  Time’s a tickin’!  I feel all this self-induced pressure to finally resolve already, one way or another.  Jake and I are closing in on seven years (!) of TTC and anymore it’s all I can do to try just one more month… just one more month…. just one more month…

In other news, Intermenstrual Bleeding: It’s Still a Thing.  Except lately it’s been accompanied by new, weird pains in my lower uterus.  The best way to describe the pain is like someone inserts a needle into my skin sideways and then vigorously, repeatedly jerks the needle up and down, over and over.  The pain waxes and wanes and mostly occurs during my luteal phase.  It has me concerned.  But I’ve learned by now not to even bother an OB/GYN or RE with these kinds of legit concerns, because they just customarily dismiss me: “It’s only your hormones being out of whack,” “Nothing we can do about it,” “You should consider another IVF (because that will stop the pain???),” rinse. repeat.

My next step is to schedule a consult with the renowned Dr. Seckin in NYC about this issue.  He’s, like, THE dude to see if you suffer from endo and all your docs have basically written you off as an overly-emotional hypochondriac.  I was able to score incredible, awesome, unbelievable, AND amazing medical coverage through Jake’s new job, which will make my visit practically free.  The only catch?  I have to wait six months for my benefits to start (thank you, Pennsylvania, for the delay).  In the meantime, well, I don’t know.   I suppose that I’ll just deal.  Pain meds help.  Lots of pain meds….

Update to follow on the fertility monitor.  I get the impression that the monitor and I will become close buddies over the coming months.  Perhaps a cute nickname is in order?  Drop your suggestions in the comments below!

Peace.

 

 

 

Endometriosis and Running

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I’m not a runner type.  There is absolutely nothing appealing to me about lacing up my sneakers and running around town or through parks or along tracks.  Running outside?  No thanks.

But I am one of those weird class of people who loves running on the treadmill…  looooove it.  I think it’s because my speed, incline, and rhythm when running on the treadmill always stay consistent, which I don’t get when running outside.  I like having that control over the elements.  Getting a few miles in before work goes a long way toward feeling healthy and energetic for the rest of the day.

But, endometriosis = inflammation. And inflammation + pelvic organs jostling about when running = pain.  I’m so over pain… so over it.

Last summer I began noticing that I’d experience pelvic pain during and after running near my ovulation time.   Like, I would step off the treadmill and double over while my uterus screamed at me and my ovary throbbed.  Fine: I quit running mid-cycle and swapped it out for the elliptical trainer. Problem solved.

Then the running pain began staying consistently during my entire luteal phase.  Begrudgingly, I again adapted. Running became something I’d do only during my follicular phase.

But now running even during the first part of my cycle is problematic.  This past cycle I ran on CD 3, 4, and 5.  And afterward?  Dude.  I could barely stand the rest of the day.  Instead, I’d be bent over in pain, shuffling around work clutching my uterus and praying for the pain to stop.  No more treadmill for Marixsa.  But there’s only so much elliptical trainer and cycling a girl can do before her eyes glaze over with boredom.

I miss running.  And I’m bent about this latest development in Endometriosis Land.

The good news is that since I’ve begun running and lifting weights, my arthritis has dramatically improved!  I’ve had exactly one arthritic “breakout” episode in the last year.  It happened only this past weekend, incapacitating me to my bed for a day.   I forced myself to work it out at the gym though and felt 100% better the very next day!  Score 1!

Anyone other endo sisters out there who experience this kind of pain when running? Any solutions to work around it?

Peace.

 

 

The Ugly Surrender

**Sorry for the stone cold silence on this blog lately.  I’ve hit a block (again) and haven’t known what to say.  Today though, after seeing a whopping 17 posts languishing in draft mode,  I decided that enough is enough.  Time to end the streak!  Here’s a post I started a good 4 weeks ago: **

It all started with the doctor.

Mentally and physically, I had reached the end of my rope concerning endometriosis and pain and infertility.  Desperate for answers and for relief from endo, last week month Jake and I consulted with a doctor at a clinic specializing in endometriosis and pelvic pain.  This clinic is in another state, doesn’t accept my insurance, and was more than an hour’s drive in thick rush hour traffic.  But its promise of hope lured me.

As a clinic specifically geared toward endo sufferers, I had high expectations.  Even though I’m aware of the science and the limited options concerning endo and fertility, I just needed to know ONE LAST TIME if there’s something—anything—out there which we hadn’t yet tried.

But?  There’s not.  Medically, my choices come down to Lupron, continuing to try naturally, or IVF (paid for by my money tree in the backyard, perhaps?).

As compassionate and knowledgeable as the doctor we met with was, she wasted little time steering us toward IVF.  Another IVF is a post for another day.  With fewer answers than the many questions we’d come with, Jake and I left the clinic reeling from the reality that we’re out of options.

Medically, the odds are stacked high against us. 

Maybe I had just needed to reach the end of myself and of my options.  If so then, honey, I’m there. Actually, I’m somewhere beyond “there.”

The thing is, this appointment wasn’t especially different from any of the many other consults Jake and I have attended.  But we had gone to this appointment in a last-ditch effort for help and left feeling deflated.

With nothing except time to talk during our drive from the clinic, Jake made one very excellent point: the only real decision to make is for us (read: me) to surrender this fertility business to God.

Now I don’t like surrender; I like control.  I like to be doing something, forward momentum… even if what I’m doing is spinning my wheels.  At least I still have the illusion of control.  But this whole baby thing?  It’s laughable to consider that I’ve ever had any control.

I’m not proud to admit this, but my initial reaction to Jake’s suggestion of surrender was anger, denial, and refusal to submit.  I felt my human pride rising up, and I wanted to rebel at the world.  The unfairness of it all—denied having a mother, denied being a mother—felt just too, well, unfair.  Now to be asked to surrender my feeble attempt at control?  I don’t want to!

Plus all the losses.  And all the surgeries. All the money.  All the doctors.  For what?  For a disease which no one can cure, understand, or even properly manage.  For years gone by and no pregnancy, no baby.  For an endless money hole.

Enough.  I can’t do it on my own.

Okay, I will surrender.  Even if at first it’s a slow takeoff.  I’m confident that my heart will fully get there, bit by bit; it takes time to soften me up.  God has allowed me to reach the end of myself so that I can lean 100% on Him.  Do I trust Jesus?  Really trust Him???  Will I surrender this thing and vanquish my self-deluded control?

What does “surrendering it” look like?  For me, surrendering looks like I put my whole trust in the Lord to heal and repair my body… even if it’s for a disease that I can’t see.  It means I remain full of hope for our future family when all looks hopeless and I desperately want to quit.  Because the truth is, I’d been considering giving up lately.  It means that the slim, couple-of-percent chance to someday naturally give Jake a baby becomes an absolute given in my mind.  It means I rest in God’s timing, because it’s always so much better than my own timing anyway.

Rest.  Surrender.  Faith.

Repeat.

surrender

 

 

Blogger Recognition Award

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My soul sister of the bloglands, Lisa over at Bloomin’ Uterus, has nominated me for a Blogger Recognition Award.  My mission for this challenge? Tell you how The Endo Zone blog began.

It’d be pretty awesome if I had an inspiring backstory to this ‘lil blog’s conception… but, instead, it was just one of those thangs:  Marixsa felt lonely in TTC land.  Marixsa discovered fertility blogs.  Marixsa likes to write.  Marixsa started her own fertility blog.

The Endo Zone is about, well, endometriosis.  TTC.  Life.  Family.  Pets.  Loss.  Opinions.  All of the other parts that make up my life, minus my true identity.

I do have one small confession to make about this blog: I am utterly terrible at naming things.  The worst.  I often wish that I had thought of a cleverer title than The Endo Zone.  The title is a play off of “end zone,” although I’m the least enthusiastic football fan you’ll ever meet.  Hence, a blog about the endometriosis zone, whatever exactly that is.  Someday I’ll get around to renaming this space.

As for backstory, I was diagnosed with endometriosis in 2010, but I’m 100% sure it’s been there since the ’90s.  Most days I forget that I’ve a history of endo: the pain, the infertility, the mega cramps, the scary clots, the pooping pain… I don’t know any differently.   But endo is not something I embrace or call my own.   I have a history of endo; I do not claim it, want it, or believe that it will get the better of me.  My life in no way revolves around a disease that God is so much bigger than.

Starting this blog has allowed me to connect with an amazing array of women, literally from all over the world.  It’s been a privilege to meet women on here who I’m proud to call my friends.  My only regret?  I wish I’d started the blog sooner.

Here are my nominations of fellow bloggers who I find incredibly inspiring in their own ways!   Tell us why you started YOUR blog!!

My Yellow Bow

From Zero to Zygote

9 Months and Waiting

Peace. ❤

REPOST: Year in [fertility] Review: 2017

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**originally posted on December 15, reposting today because, well, 2017’s end is imminently looming. Praise God for a new year!**

Somehow—in a blur of time and events and dates—another year is quickly drawing to an end.  I’m kind of stunned to find myself writing about 2017 ending, and so soon it seems!  And I’m kind of [read: very] disappointed to find myself still blogging about fertility stuff as we move into another year.  Even so, I’m immensely grateful for God’s goodness and protection during this year.  Fertility issues are just one part of the whole of my life.

So for those and myriad other reasons I can’t write here, I’m okay and moving still toward a deeper peace.  I continue to have moments of anger, frustration, and sadness about our inability to conceive.  Some days I can’t sense the light; I can’t see how this infertility will ever resolve; I feel my faith weaken.  But, overall, I am sustained by God’s peace and a strong sense to continue to wait patiently… although I’m notoriously impatient.  Character is being built here.  The process is uncomfortable.

As I look back over the year, here are the highlights of 2017 when it comes to our TTC sojourn, good and bad:

  • SUCCESS: A successful laparoscopy in March that opened my Fallopian tube and cleared away lots of adhesions.
  • SUCCESS: Ovulated 12/12 month this year.
  • SUCCESS: Normal cycle lengths 12/12 months this year, ranging from 24 to 31 days long.
  • SUCCESS: 11/12 luteal phases that were 14+ days.  Goodbye, luteal phase defect of 2016!
  • FAIL: My average 2017 ovulation cycle day was CD12, usually falling on CD 9 or CD10.  Hello, too-short follicular phases.
  • SUCCESS: Diagnosis of mystery bleeding.  Finally!
  • FAIL: Diagnosis, but no cure for mystery bleeding.  Intermenstrual bleeding continues.
  • FAIL: Why, in my mid-30s, do I still have monstrously painful periods?  I thought that period pain decreased with age?  (Actually, when I think back to my teen years and early 20s, my current period pain looks like a walk in the park.)  I still have to take prescription painkillers and spend a day or two in bed each month.  So, this mini-rant counts as a fail.
  • FAIL: Perhaps the biggest fail of them all: still not pregnant.  Yeah…

Our 2018 fertility plans remain open-ended.  Jake and I are in preliminary talks about going another round with IVF.  I’m quasi open to it; he’s much more cautious.  We totally cannot afford IVF and if we do decide to do it, I’ve no idea where the funds will come from. Like I said, it’s preliminary.

I’m in the process of changing my health insurance over to  Jake’s plan.  I found a clinic that—believe this?—SPECIALIZES IN ENDOMETRIOSIS (huzzah!).  And when I say specializes in, I mean that endometriosis is ALL THEY DO, all day.  The entire office is dedicated to patients suffering from endo.  Once my insurance has been squared away, I plan to make an appointment.  I so need a doctor who will actually help me, and I’m hopeful that this place will be the answer.  It’s an hour away and 90% of the drive involves major congested roads but I don’t even [mostly] care.

Even though it’s two-odd weeks til the new year, I’m pleased to see 2017 on its way out.  Never liked the odd numbered years as much for some reason.  I’m ever hopeful that 2018 will usher in new beginnings in our fertility sojourn.

Peace.

Endometriosis Awareness Month

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How has half of March slipped past without my even mentioning that it’s Endometriosis Awareness Month?! I know, I know: Endometriosis Awareness Week has long since passed us by with no mention by yours truly… what can I say? I’m kind of a slacker. But surely I won’t let a whole month go by without mentioning it!

Since there’s still a decent amount of March left, check out endometriosis.org’s list of worldwide endo events taking place this month by clicking here. Those of you in other countries can click to find an upcoming event near you (or hopefully near you!). I have no affiliation with endometriosis.org; it’s just a website that I think is very informative about endometriosis.

You won’t find any lists of endo facts or stats on my blog: I leave that task to more qualified sources, like the site I just mentioned. In fact, I don’t really talk much about endo on The Endo Zone… shame on me! This blog is more about how endometriosis has affected my fertility and follows my quest to not allow this disease to rob me of having children. I’m not an endo proponent or advocate by any means. Instead, what you will find here is one woman’s account of living with endometriosis and, in many ways, living around endometriosis.

But since it is Endometriosis Awareness Month and since this blog is called The Endo Zone, I thought I’d take a minute to tell my readers how endometriosis has affected my life. So here we go!

Topping the list would be my endo surgeries, but they only happen every few years; that still leaves my day-to-day life with endometriosis. In that sense, I’m one of the fortunate ones. It’s so true that one’s stage of endometriosis doesn’t correlate to her pain level: for instance, I have severe stage 4 endo. Yet I don’t suffer from the daily debilitating pain that another endo sister with stage 1 or 2 might live with. Instead, endo affects my daily life in the form of heavy menstrual cramps, mega big period clots, and daily ovarian pain. Oh, and 60 months’ worth of infertility… lest I forget. Blocked fallopian tubes, adhesions, and adenmyosis are all parts of my endo experience, but I can’t actually feel those things. So while they might affect my life, if it weren’t for surgeries then I’d probably never even know these things existed in my body.

And that’s what endo is: an invisible illness. A real predator, but an unseen one. It lurks and steals, and is—incredulously enough—often misdiagnosed.

While endo awareness and research are definitely important, I don’t define myself by having endometriosis. That’s part of the reason I’ve never before posted about Endo Awareness Month. True, I suffer from endometriosis. But it’s such a small part of who I am.  I believe that God is a Big God. So I try not to get caught up in the diagnosis and, instead, I like to focus on His promises of restoration and healing. Now I don’t discredit all the hard work and effort that others have made in getting this disease onto people’s radar… And I hope that I don’t come across as unrelatable… It’s just that I believe this diagnosis is something which, in the long run, will not conquer me.

Or any of us.


Finally, I can’t finish this post without mentioning my BFF of the blogging world and fellow endo warrior, the fabulous Lisa of Bloomin’ Uterus. If you have even a speck of endometriosis in your body and aren’t already following Lisa’s site, run—don’t walk—on over there by clicking here.

In keeping to my promise to Lisa, here I am wearing my Bloomin’ Uterus t-shirt in honor of Endometriosis Awareness Month.

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The pic
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the words

Since I didn’t have anyone to take my pic, I had to use the bathroom mirror and the writing is backward! It says, “Endometriosis Awareness and Support,” followed by the site name. Good shirt for a good cause!

Happy Endometriosis Awareness Month to you all!