Pre-op Festivities

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In keeping with my tradition of being a Bad Blogger, I never did blog my promised update for surgery #6.  Oops.  I’ve been meaning to update here for awhile, but: life.  You know how it is.

My next surgery is set for March 12.  Four-plus weeks sounds like a long time, but I’m sure it’ll whiz by.  My pain level and symptoms from endo have amped up during the last few months, so I’m really hoping that after this surgery will provide much-needed relief.

Surgery will be laparoscopy accompanied by D&C, hysteroscopy, and chromtubation.  Dr. Lee is also going to cauterize my cervix (again) in an attempt to stop my intermenstrual bleeding. I do not have high hopes that cauterization will work this time, because it did nothing to stop or even slow my bleeding last time. Time will tell though, and I’d be relieved to be wrong. A colo-rectal surgeon will assist Dr. Lee, if needed. I really hope s/he is not needed. Recovering from partial bowel resection is no joke, and not something I wish to repeat, like, EVER.

Pre-op this time around is pretty breezy: I’ll have some blood work done—including an updated AMH, just for kicks—and the day before surgery I’ll do a bowel prep. Bowel preps are some nasty business. This will be my third bowel prep, and I don’t expect it to be any funner than the other two were (which were so unfun I can’t even say …). Even so, I don’t have much in the way of pre-op testing, which I’m pleased about.

Dr. Lee suspects that I have endo either on my urethra or attached to one of the nerves that runs near it in my groin area. Lately I’ve been suffering from weird pubic/groin/whatever pain that shoots through my body and causes abdominal spasms. And I mean spasms, like spasm spasms, where my whole body jerks uncontrollably for minutes on end. It has had Jake and I completely freaked out, but according to Dr. Lee, patients with severe endo often have it on their urethra or nearby nerves, so that was (sort of?) reassuring.

In addition, I’ve been having ongoing stabbing uterine pain throughout my whole cycle that jars me and doubles me over. Clearly, something bad is going on in my uterus. My pelvic MRI didn’t show much, but in my opinion it was kind of a waste, because what can MRI really show when it comes to endometriosis?  I’m still not clear why Dr. Lee orderd my MRI in the first place, but, hey, I’m not the doctor here.

Otherwise, I’m prepared for my next surgery.  I fully know what to expect, how to prepare, and what recovery is like, so I feel little-to-no nerves in that department. I’m just glad it’s scheduled and am looking forward to maybe having relief this time around.

Peace.

 

 

 

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Upcoming Surgery #6

Hello, all—if anyone’s still out there! My blogging has been slowly, s-l-o-w-l-y crawling toward the point of nonexistence, and I’m so sorry for being such a terrible blogger! But, life happens.

Alas, here I am. Still sometimes blogging and always still walking among the infertility trenches. But I’m beginning to climb out: I see a definite end in sight—even if that end involves bidding adieu my unproductive reproductive parts.

Blogging

In big news, part of my blogging absence is because Jake and I bought a house! Long story short, we bought  a townhouse, moved to the burbs, and are currently adjusting to the massive shock of our lives being completely uprooted.

The other reason for my blogging absence is because fertility/infertility hasn’t been much on my radar. For awhile I believe infertility became an idol in my life. It was all-consuming. As time passes, it slips further and further down my Top Ten list. Lately, at best I’m halfway interested in infertility’s role in my life. Mostly, I’m trying to move away from it, rather than digging in deeper. I want to move on.

Endometriosis Surgery

Back in October while scouring the internet for an endo specialist, I found a contender, right in my own backyard! Jake and I had a surgery consult with the doc, Dr. Lee, last week. Dr. Lee is an endometriosis wizard (wizardess?) and I think I’ll be in good hands with her for an excision surgery. She’s head of gynecology at a hospital in the city and know a lot about endo. Despite that her beside manner struck me as clinical and slightly cold, I still liked her because she plans to do a thorough endo cleanup on me.

Dr. Lee’s surgical plan is more involved than my last cleanup. Because I had a partial bowel resection during one of my prior endo surgeries, I have to meet with a colo-rectal surgeon. A pre-op bowel prep will also be involved (yech). Next week I’m having a pre-op pelvic MRI, which Dr. Lee also ordered. Then some other x-ray or specialist or… something… is involved. I basically forgot at this point what she was saying. I got hung up on the whole, “It’ll be a big surgery” part, and the rest was kind of a haze. There’s also a good chance I’ll spend a night or two in the hospital if my colon is involved again.

Surgery will be excision of endometriosis, removal of adhesions and any cysts, and cauterizing my cervix (again…) to try stopping its endless bleeding. Unlike my last two surgeries, this won’t be a daVinci robotic surgery.

Hysterectomy

Like every doctor before her, Dr. Lee reviewed my previous surgical reports and was all gloom-and-doom about my prospects for fertility and for long-term endo relief. She kept emphasizing my need to have a hysterectomy, and for the first time in many years I actually heard her out about it. Normally I tune out the docs when they start yammering on about the virtues of hysterectomy (although never the downsides… hmm), but I’m starting to wonder if maybe—just maybe—the docs are right.

It mostly comes down to quality of life: Do I want to keep a modicum of fertility, but live with ceaseless pain and bleeding? Or do I want to say goodbye to that sliver of hope/fertility, but finally have pain relief (and, dare I say, closure)?

I’ve reached a point where I can’t 100% confidently say that I want a baby badly enough to continue suffering physically and emotionally with pain from endo, pain and bleeding from a super-friable and inflamed cervix, pain from fibroids, endless ovary pain, pain from breast cysts (yeah, that’s a new thing…), painful intercourse, mega monster incapacitating cramps, and the icing on the cake: infertility. I just want it all gone… even if that means I can never be a mama. It’s a bitter pill to swallow. We’re praying for God’s leading on this. For now, I wait quietly.

 

“There’s Nothing Wrong”

I hope you all had a wonderful summer.  Although I took a blog break, I’ve still been stalking everyone else’s blogs this summer and commenting here and there. I guess this post means that I’m back… for now! 

Although I can point to a reason [endometriosis] for my thus-far lack of babies, my unexplained non-period bleeding persists. I’ve been blogging consistently about intermenstrual bleeding for two years now.  I know you’re all bored stiff by it.  So am I. I’ve visited umpteen docs in that time, none any better than the other, who’ve performed procedures (cauterization), run tests (biopsy), and cut me open (laparoscopy) to try fixing the issue.

No-go.  Still, I bleed.  Like clockwork, each doc unhelpfully informs me that, “It’s just your hormones,” “Nothing can be done,”  or, my personal favorite, “You’ll have to find a way to learn to live with it” (like, what do you think I’ve been doing these past two years?!).  None of these docs actually test my hormones, mind you.  They just give me the same old canned answers out of, I don’t know what…  noncommital laziness, perhaps?

This summer I visited my GP because my pelvic pain has been worsening and the bleeding is taking over my life.  My GP (Dr. Cooper for today’s pseudonym) is a totally awesome chick, and visiting her is like chatting with a girlfriend who also just happens to be a super smart doctor.  I had high hopes she could help.

After patiently listening to my side of things and asking well-thought questions, Dr. Cooper developed an attack plan: I’d have a much-needed updated pelvic ultrasound and my hormones thoroughly tested. After reviewing my results and some careful cogitation, she’d refer me to another doc worth their salt.  I liked her plan: simple, yet effective.  The prospect of answers and relief was very enticing.

Other than showing that I have a uterine fibroid, my ultrasound was unremarkable. Same with my  blood work. All was in order, save that my Sex Hormone Binding Globulin Serum (or “Sex Goblin” as Jake and I like to call it) was off the charts because of my still-uncontrolled thyroid.  Much as I’d like to blame him, my misbehaving Sex Goblin isn’t responsible for all this bleeding and pain.

To my dismay, Dr. Cooper referred me to Dr. B.  Yes, the very same Dr. B. whom I long-ago fired because he had the personality of a potato.  Aaaand the same Dr. B who also no longer practices medicine; I guess Dr. Cooper missed that part of the story.  Another dead end.

Still, I bleed.  Unresolved.  It’s slowly driving me crazy.  And isn’t that the worst way to go?

White. flag. waved.

 

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.

 

 

 

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.

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