I Ruined My Body

My guilt factor is sky high lately.  What if I hadn't had that surgery, what if I'd had another doctor do the such-and-such surgery, what if I'd had no surgeries at all?  What if I'd factored in my health first?

It's just overwhelming to live in constant pain, pain that's a direct result of (in)fertility treatments.  (Side note:  I feel like an imposter saying "fertility" treatments because I really only went through one medicated treatment cycle). 

When we were TTC, any guilty feelings were centered around what I wasn't doing:  not eating/drinking the correct things, exercising too much or too little.  I shouldn't have eaten that goat cheese! I probably killed my embryo!  Etc.  Or feeling wishing I had started treatments earlier.

I can't stop thinking lately about all the infertility-related choices I've made in the past few years.  I chose the crappy RE to do my initial IF workup.  Since the crappy doc suggested a laparoscopy to see how "messed up" I was inside (his words) and I didn't trust him to do it, I chose an outside endometriosis-specialized physician to do the surgery.  During the lap, the endo guy also did a hysteroscopy and said my septum wasn't large enough to be a fertility issue, and he didn't see any other problems.

Enter the good RE, who eventually found scar tissue in my ute and thought my septum was an issue after all.  Two surgeries later, my life was turned completely upside down by chronic pain.  I don't blame her surgical skills—I blame the damn balloon—but my life changed dramatically on 3/9/12.

I'm trying to forgive myself for everything.  For not seeing the good RE first, for not doing more research before I started having surgeries.  For trusting that any type of hysteroscopic surgery was minor.  After all, I'd had laparoscopic surgery already.  Why would I flinch at something less major than that?  It's like doing injectable IUIs after Clomid ones; eh, not that big a leap.

Now that my TTC chapter is closed, I can look at it as a whole and see the flaws and horror more clearly.  I'm not wrapped up in next steps and cycle days, which is AWESOME, don't get me wrong.  But reflecting on that period of time is rough, and I guess the TTC chapter is being drawn out in a way because I'm still physically feeling the effects of my treatments.

I feel like I've ruined my body.  I mentioned on my last post that I used to run half marathons.  Running was a huge part of my life throughout my 20's.  I ran 5Ks, 10Ks, and half marathons.  Before that, in high school and earlier, I was as dancer.  In my 30's, I took up yoga and practice almost daily.

That's where I was, physically speaking, on 3/9/12:  lean and mean from many hours of yoga.  I felt great when I practiced and was strong enough to do some pretty tough poses.  I was flexible for the first time in my life.

I can't even take a walk now.  I risked my body's wrath today by walking for about 20 min at lunchtime and I'll probably suffer the consequences this weekend.  I feel completely defective and it's embarassing to talk about; how do you tell your coworkers that you can't walk because your pelvic floor muscles are fucked up?  Who wants to say "pelvic" anywhere in the vicinity of work?

My body is mushy now and 5 pounds heavier.  My pants are getting tighter and tighter.  Surprising fact:  if you don't move around at all and keep eating as if you do, you gain weight.  I want to move.  I crave exercise.  I want to stretch and be flexible again and not feel my hamstring clamp up when I put up my leg while shaving.  I've tried stretching; I really have.  It turns out that your pelvic floor muscles are connected to EVERYTHING and hence EVERYTHING hurts to stretch.  Want to stretch out my pinkie finger?  Can't.  Connected to the pelvic floor.  My PT tells me to do what I comfortably can but not to do anything painful at this point, so I'm left with nothing to do except a couple of measly exercises she gave me.

So, to summarize:  my lady parts are fucked up because we tried too hard to get pregnant (see what I mean?  Impossible to talk about without getting into areas all sexual-like).  I hate my body and hate that I ignored the warning signs.  I already had pelvic pain before all the IF shenanigans started.  Why did I screw things up more down there?  Blah.

*****
Hmm, that was all over the place and not at all what I set out to write.  Funny how that works.

I'm tired of the headaches.  TENS helps with them so we're going steady again.  The headaches almost make me feel cross-eyed at moments, like I can't focus for a second because of the intensity.  It's really weird, but I can tell that the headaches are part of the neuropathic pain, and my doc concurred.  It's like the pain comes up from my pelvis (hate that word and must find a new one), through my core and spreads out in my head.  Caffeine and painkillers don't touch it.  Lyrica is pretty much the only thing that works, that and TENS.  I'm going through 9V batteries like a fiend.  It turns out that rechargeable 9Vs aren't as readily available or as high a quality as you might think.

In the interest of ending on a high note, I had a major victory today.  <drumroll> ...I did not cry at a coworker's pregnancy announcement.  I cried at her last one but shrugged off this one like a champ.  It helped that my pregdar went off big-time when I saw her this morning...it wasn't her body, it was her smug pregginess.  And I'm sure I will love the upcoming meetings when she will turn work-related conversations into something about her baby. 

But anyway.  No tears!  Victory! :)

Have a great weekend!

I Never Want to Be Pregnant

Under no circumstances do I want to be pregnant.  I do not want to have an oopsie baby after I adopt. I do not want to have a surprise pregnancy at age 43.  I do not want to do another letrozole cycle.

This does not mean I don't wish things were different with my body.  That I don't wish I had another body without a pain syndrome and uterine issues.  I still long to grow a round belly, feel kicks and punches from a little one inside me.  The desire, the longing, is still there.  But it's like wishing you hadn't broken your arm; it's broken and you have to deal with it.  Maybe you have to stop playing tennis forever.  Maybe the break is so bad it will affect you the rest of your life.  You can spend your time wishing you weren't limited physically or you can adjust your expectations. 

My decision to forever stop TTC didn't happen overnight.  A few weeks after my surgery in March, even though I was still in extreme pain, I was scheduling a 3D sonogram appointment to prepare for my next letrozole cycle.  I was optimistic.  I didn't know this kind of pain syndrome even existed.  Who has heard about pelvic floor muscles unless you've given birth or are 80 years old?  I hadn't been aware of mine.

Needless to say, I had to cancel the 3D sono appointment, which was just one of the many things that has given me pause since March.  If I couldn't schedule it at that point, then when?  The next month?  Three months from now?  (Correct answer is none of the above.)

My thinking shifted gradually.  I'd felt unsure about trying for pregnancy #3, anyway.  Pregnancy #2 ended around 7 weeks last fall.  The chromosomal testing came back normal, and my doctor thought the miscarriage was related to a structural problem with my uterus.  Supposedly the structural issue was fixed by my last (catastrophic) surgery, but who really knows?  Why tempt fate?  Why put myself in the position to lose another baby when my heart has been shattered twice already?

As the months ticked by after the surgery, I stopped planning for my next RE appointment.  I had a brand new, all-consuming shitstorm with that wasn't TTC-related:  chronic pain.  But in spite of that, I started living again.  I ate what I wanted:  suddenly, soy is ok again!  Dairy is not evil!  No need to go gluten/nut/coffee/sugar-free for fostering the ideal environment for baby to stick around!  I didn't know what cycle day I was on.  I didn't cry in the bathroom when my period arrived and then fill my grief with baked goods.  Not TTCing has been one of the most freeing things in the world.

Before The Surgery to End All Surgeries, I'd had difficulty conceiving and two miscarriages, and I hated TTCing.  The IF blogosphere is filled with people like me who keep trying, understandably, for their take-home baby.  Chronic pain is what did me in.

I'm kind of an old pro with intermittent pelvic pain.  I've had horribly painful periods since I was a teenager, which turned out to be endometriosis that was probably contributing to my infertility (huge surprise—not).  But the painful periods were only for a few days a month.

The pain I have now is all the time.

I've never experienced any kind of chronic, day-to-day pain other than run-of-the mill tendinitis or other exercise-related aches.  This is completely new.  If I hadn't gone through infertility and loss, I'd say this is the hardest thing I've ever gone through.  So it's a close third.  The pain tries to shatter me.  Not one aspect of my life is untouched:  my relationships, my job, my sleep.  My sanity.

I've used about 130 hours of sick leave for the pain since March.  I missed my nephew's first birthday party and my niece's summer ballet recital.  My demeanor has been irritable and prickly for the most part, even if at first I appear pleasant.  A smile or pleasant conversation does not mean I'm not in pain or will not suddenly lash out at something.  Or just lose track of what you're saying as I plot my next attempt at pain relief.  My pain level is usually pretty high but I'm trying, trying ever so hard to pretend it doesn't exist.  The irritability is usually unleashed on my husband, and when I immediately apologize and explain that my pain level is really high, he is understanding.  But he doesn't deserve this.

I go to PT weekly and usually have one other doctor's appointment during the week; it's a big time-suck.  At these appointments, I've asked about my prognosis, of course.  My healthcare providers don't like this question because they don't know the answer.  They hem and haw a bit, and say we'll have to wait and see, "ask me again in a few weeks."  The two physicians I've asked are both pelvic pain specialists, and both have predicted that I would "probably" be fine with a pregnancy.  That pregnancy hormones tend to have a calming influence on my syndrome. 

Fine.  But what about the ENTIRE REST OF MY LIFE AFTER THE PREGNANCY?  Will the changes wrought by pregnancy and childbirth wreak havoc on my already fucked-up body?

The physicians haven't given me a real answer for that.  My PT has given it to me straight, though.  She says she's seen it both ways:  some people with my issues have a pregnancy that goes ok and they feel fine afterwards, and some do not.  I didn't ask her to elaborate much because I don't even want to hear about patients who have it worse afterwards; I cannot imagine their pain.

I'm not a risk-taker.  Not that anyone knows statistics for outcomes of women with uterine abnormalities who have undergone surgeries and go on to develop chronic pelvic pain and then go on to have pregnancies, but I've thought a little about what kind of odds I would bet on:  at what odds of worsened pain in the future would I consider getting pregnant again?  What if 50% of women like me felt ok during the pregnancy and then, postpartum and beyond, felt even better than before the pregnancy?  50/50 odds.  No way in hell I'd do it.  What if 90% felt great afterward?  Nope, still wouldn't do it. 

I cannot conceive (pun intended) of a future filled with this kind of pain.  It's been going on for 7 months already and I don't know how I've done it.  People comment on how strong I am to have dealt with this for so long, but I don't feel strong.  I just feel like myself....in severe pain.  It's day-to-day living now.  I try not to plan too far in advance.

If I can't find a way to decrease my pain level before I have a child, I cannot be the kind of mom I want to be.  I physically could not handle the sleep deprivation that comes with a newborn; less sleep = more pain.  I would be glued to the couch, not on the floor playing with my baby or walking around to soothe her at night.  I couldn't take her for walks in the stroller or teach her to ride a bike.  I would have trouble attending her soccer games; sitting up for a couple of hours hurts too much.  Worst of all, I could not be the emotionally supportive, stable, fun type of mom I want to be.  It would not be possible.

The decision not to TTC is easier knowing that adoption is a possibility.  But even if adoption wasn't on the table and our remaining option was childfree living, I would have to choose childfree living over TTC.  Why in the world would I choose *possibly* having severe pain the rest of my life?  My (hopefully) future children would be worse off for it, my family and husband would struggle with me, and I would constantly fight the pain demon.

When I started this post, I'd intended to write even more, tell you about how in my previous incarnation, I ran a half marathon at an 8:10 min/mile pace.  Now I can hardly walk a mile once a week.  I'd wanted to tell you that I do still grieve for the loss of my husband's and my biological child, the little blonde boy who looks like his dad.  Also, I could write for days about how you don't know until you've been there what kind of decisions you'd make when you've had pain that reaches an 8 every day, sometimes staying there for hours at a time.  And it goes on for months and months, possibly years.  But I've written enough for now. 

For all of these reasons, I will never pursue pregnancy again.  I love myself too much and won't knowingly put myself in harm's way.  I want more out of life than appointments, pills, and this seemingly endless gnawing, burning pain that is trying to eat me alive.

Wherein Dr. Fourth Opinion Tells Me to Spaz Down

Had my long-awaited appointment today with Dr. Fourth Opinion today, the appointment I probably pinned way too many hopes and dreams to.  I just want him to fix me; that's not too much to ask, right?

He redeemed himself from his status on my shit list and I once again think he's a good doctor.  We talked a lot, a lot about long-range goals, short-range goals, what to do when I'm having a flare.  His answer to that last one surprised me.  He doesn't want to call him if I'm flaring.  Wha??  He says these flares are normal and that I need to learn how to cope with them on my own, throwing in another reminder about anxiety management.

I wonder if he talks as much to his other patients about anxiety reduction or if he's decided I'm a stressball.  I totally have a chip on my shoulder; I feel like as soon as physicians see that I'm taking Prozac and Ambien, they decide to give me The Talk, the one where they tell me (as if I've never heard of these things) that I need to be using other alternative modalities, ie, meditation.  And I do practice meditation and I think I'm doing a bunch of other things to reduce my stress level, although there's room for improvement.

During my appointment today, we got into a circular discussion where he'd tell me to make sure I keep my psychiatrist in the loop and keep up those alternate therapies, and I'd somewhat miss the point and throw in a "but, how do I not freak out during a flare?"  "By keeping up with these other therapies."  "But what about when the flare is really bad?"  Etc.  And I felt a little ridiculous, but this has been my life lately.  I've missed a ton of work, can barely function, and am just getting back to the point where I can reliably drive myself to and from work.  I guess the point is that my case isn't that unusual.  Dr. FO has seen tons of us, some of us for really long periods of time, it seems.  I'm not going to die from this, even though I swear, I thought I would at some points during the last few weeks.

Oh, and as predicted, Dr. FO held his position that the Pill did not cause my flare.  Interesting that he's so convinced and I'm so convinced the other way.  Oh, well.  It does suck that I'll have to deal with painful periods every month, instead of once every 10 weeks, but I'll take a few days of cramps over the incapacitating flares. 

I wish we did still have the Pill as our means of birth control, though.  Apparently I'm not a candidate for anything—my RE says that absolutely, under no circumstances should I ever get an IUD.  (I concur).  I don't want to do any other pills with estrogen, and Dr. FO doesn't recommend the progestin options.  I guess there's always vasectomy (I'm sure as hell not going to have more surgery), but that seems so...final.  A little too final for now.

So, the pain plan for now is focused on PT.  My PT wants to try TENS this week, which is some kind of electrical stimulation.  If it reduces my pain, I might get a unit for home use.  Dr. FO also increased my Lyrica dose, so we'll see if that does anything.  He tweaked some of my other meds and I'm happy with how we left things.

So.  Lots more appointments in my future.  PT, biweekly sessions or possibly weekly if my body can handle it.  Psychiatrist for spazzing down lessons (which I had plenty of in my Alice Domar-modeled IF group therapy last year...I am schooled already).  Follow-up with Dr. FO in 6 weeks.  Fun-ish appointments with adoptive couples to help us make some progress in that direction.

I just remembered that I think I wrote a post a while back about a doc telling me to spaz down.  I feel the need to add the disclaimer that the docs aren't using those words; Dr. FO is genuinely trying to help and exploring lots of options with me.  I'm just touchy about them saying meditation etc will heal all ills.  It's in the "just relax" category for me, even though I know there's truth to it in the case of my pain.  I've come SO FAR in reducing my anxiety in the past year and I need lots of credit for that.  Shout out to Prozac, meditating, and friends.

Whew.  So that was that.  Onwards with kicking pain's butt!

Rejoining the Land of the Living

I think the pain flare is ending, thank God.  Two weeks of barely hanging on, constantly wondering if the ER would be at least more comfortable, trying to shower regularly and maintain a full-time job...it was exhausting. 

Unable to get in touch with my Dr. Fourth Opinion on Tues, I made the executive decision to stop taking the Pill.  He didn't think it was causing the flare and Dr. Third Opinion hadn't thought my last Pill adventure was the cause for the last bad flare, but the flares happened with uncannily similar timing from the day I started the Pill.  I'm officially done with it for now and done with their professional opinions about that matter.  Hmph.

I started feeling better within a day or two of stopping the Pill, and now I feel almost back to my regular, pre-flare level of yuckiness.  It feels AMAZING.  I ran errands for 3 full hours yesterday and swept my front porch today and have felt the foreign sensation of actually feeling happy.  Who knew my fairly high baseline pain level could feel like such a relief.

I have an appointment with Dr. Fourth Opinion tomorrow and I don't even know where to start with him.  I'm disappointed in how long it takes him to get back to me, and sometimes he gets his nurse to do the call-backs, meaning I can't ask him questions.  I need to know what to do when the pain is so bad I'm considering going to the ER....every day for 2 weeks straight.  I need somebody on my side.

My PT was great this week, though.  I couldn't make it to our session because I was laid up at home, but she facilitated communications with my doctor about how to proceed with treatment.  I don't think her sessions are really to blame for the flares, after all; lots of data point to the Pill instead.

*****
After weeks of not uttering a word about adoption to my husband, I broached the topic again today.  It was so nice to feel like I could talk about it again, like I have the tiny bit of leftover emotional energy to invest in the discussion.  I wasn't able to think about it for weeks—just no emotion to spare.

Right before we left for the beach last month, we met with a local couple who is an excellent adoption resource.  Had a terrific conversation with them and plan to talk with them some more soon.  They told us they'll provide guidance on what to do next, how to proceed with research, which is exactly what we need. 

*****
Worried about getting through this work week since I'm still not completely functional, but at least I have a very understanding boss and a flexible work-from-home policy.  I tell my boss I'm having health issues and he doesn't ask questions...I don't really want to get into the whole dysfunctional woman parts convo with him.

Hope you guys have had a nice weekend!

Why It's Better Not to Count

I've always loved counting.  This was particularly annoying to my family on vacations to Florida, when counting mosquito bites and lizards was a favorite pastime.  I was so cute...hee.

In the vein of counting things for no good reason, I came up with some figures for my recent medical drama, starting with surgery on 3/9:

• 1 surgery
• 4 specialists' opinions about my craptastic recovery

Hmm, the number of specialists is really subjective.  I didn't count two RE fellows or the urgent care physician.  Now, let's add up appointments:

• 10 doctors' appointments
• 1 ER visit
• 1 urgent care visit
• 5 PT sessions
• 3 acupuncture sessions
• 3 abdominal massages
• >10 phone calls with doctors

I am so sick of talking to people about my health or lack thereof.

I am intentionally not tabulating the number of therapist or psychiatrist appointments because I'm afraid to count them up.  I don't feel like I'm going all the time, but there are a lot of appointments when I look back at my calendar.

I've had a few diagnostic procedures:

• 1 CT scan
• 4 ultrasounds
• 5 urinalyses

These numbers are only since March.  If I go back farther, say between November and March, I had 2 saline infusion sonograms (3D sonos) and 3 hysteroscopies.  How about some drugs:

• 10 pain-related medications
• dozens of trips to the pharmacy

They've memorized my name and birth date at the pharmacy.  And now for the really depressing ones.

• 71 sick hours used at work; total >10 days
• >$7000 spent for medical care so far this year

So.  Depressing.  Maybe counting is for the birds.

*****

Mr. Detour is out of town for 9 days visiting his parents and I panicked before he left, worried that I would spend every night feeling lonely in a quiet house with no one but the dog to talk to.  So I did the reasonable thing and made plans with every friend in a 30-mile radius, leaving me zero time alone to do critical things like recharge and do laundry.  And sleep. 

But it's been pretty fun.  This week, my social calendar includes:

• watching a kid's triathlon that my niece and nephew raced in
• eating two brunches with friends (breakfast food is THE BEST, am I right?)
• visiting a friend's house who recently adopted a baby
• watching a movie (Magic Mike, which was pretty dumb but had good eye candy)
• receiving a massage (social because a good friend is my massage therapist)

Phew.  No plans tonight, though, so I will be crashing.

*****
My blog is having an identity crisis.  I'm going to update my header but haven't figured out how I want it yet.  Hence the uber boring one I currently have.  Blogger doesn't provide a lot of creative options.

I also changed my blog name from "Detour" to "Detour to Motherhood."  Not a huge change because "to motherhood" was already in the url.

Hope you guys have a good week!

Dr. Fourth Opinion Throws a Curve

Hi there, those of you who are ICLWers new to my blog!  I'm a 35-year-old infertile, TTC #1 with two miscarriages and an inhospitable uterus.  My focus lately is severe pelvic pain that's been around since a surgery 4 months ago.  My husband and I are starting to think seriously about adoption.

Today was the big day.  My appointment with Dr. Fourth Opinion, the man who has all my hopes and dreams riding on his shoulders.  Poor guy. 

He was really great.  Spent a ton of time with me, really listened, had an excellent bedside manner, and seemed very competent.  Also young.  No offense to any young'uns around here, but this guy was probably born in the '80's and it makes me feel old to be at the age where my doctors are younger than I am.

He agreed with everything my previous doctors have said about the causes of this pain.  I don't know if I'm really describing it accurately, but it has to do with pelvic floor muscle spasms.  The spasms cause trigger points in my upper abdomen, giving me horrible burning pain below my ribs.  The pain migrates around and is now worst in my lower pelvis, where the pain is both dull and burning. Burning is symptommatic of neuropathic pain, which I admit I don't entirely understand.  Isn't all pain related to nerves firing?

Anyway, I asked Dr. Fourth Opinion The Big Question, namely what is his prognosis, particularly around a possible pregnancy.  Am I foolish for considering pregnancy after all of my body's freak-outs?  His answer terrified me.  He said my prognosis was great, that he expects a full recovery, and a pregnancy would probably not make anything worse.  Shit.

Just when I think I've got it all figured out, Dr. F.O. throws a curveball.  Part of me really wants to be done with this chapter, as you all know.  But on the two days a month that I'm feeling reasonably good, I think about pregnancy.  I want it.  I wasn't expecting the desire to grow a baby to switch off entirely, at least during my childbearing years, but when a physician tells me that it might be possible....I pretty much ovulate on the spot.

So, that's about it.  Dealing with lots of mixed feelings.  My big family-building decisions need to be put on hold for now until I really start getting better.  I'll continue to research adoption as much as possible, also keeping in mind that the biological route is not out of the question.  Grr.  Back to in-betweenness where the main thing I have to do is wait.  Wait and heal.

Dr. F.O. added a tricyclic antidepressant to my medication cocktail.  He said his clinic likes to use tricylics and Cymbalta to treat the types of pain I'm having.  I can stay on Prozac, which is very good because withdrawing from it would give me a 3-month hangover.

I will also be seeing a new physical therapist whom Dr. F.O. highly recommends.  I was feeling wishy-washy about mine, anyway, so I'll look forward to seeing someone else.  I mean, as much as you can look forward to the eleventieth medical appointment you've had since the beginning of the year.

I imagine some people reading this are like, "Just freakin adopt and be done with it."  I'm even telling myself to just adopt.  I KNOW.  I know and also don't know from lack of experience how difficult the adoption process can be, but there is something very attractive about starting a different difficult process.  One that doesn't involve my body.  And yet, it is so expensive.  Depressingly expensive.  And difficult.  I can't even begin to express all my thoughts about adoption vs TTC right here, right now.

Phew.  This felt really good to write.  Your comments about my last few posts have been so helpful.  Some of you have said that choosing to adopt is not necessarily closing the door on a biological child, and I appreciate that reminder.  Starting to research adoption is bringing me so much hope, so many daydreams about nurseries, and I'm so lucky to have your support along the way.

NURSERY, Newborns, and Annoyances

You can't talk about domestic adoption for long without someone bringing up The Photobook.  This is what an adoption agency shows a birthmom when she's choosing an adoptive family, so it needs to be exceptional.  I'm totally overwhelmed by it, but a friend in the know emailed me some great tips.    Lots of happiness, love, and uniqueness need to be projected or you won't get chosen for many years.  No pressure or anything.  (Those weren't her exact words...I might be exaggerating.)

Somewhere along the way, amidst tips about showing how awesome you are as a couple, my friend mentioned that it wouldn't hurt to show a photo of the nursery if we have one.  The NURSERY.  OMG.  The email was chock full of serious, helpful advice, and NURSERY is what I can't get out of my head.  Must. Decorate. Nursery.

Of course, we haven't even decided for sure that we're doing adoption.  We have NO idea what agency we'd use, or how to start a home study.  But now is a good time to be thinking about nursery paint colors, right?  Because I can decorate.   I can paint a wall, hang a picture, and make a bed.  Finding the right agency to connect me with my child is a whole other ballgame and slightly terrifying.

In the vein of avoiding huge decisions like choosing an agency, I took a first step in decorating the nursery.  I dug a couple of huge teddy bears out of the closet and set them on a rocking chair with a cute baby-appropriate quilt.  They're sitting where I can see them as I walk by and I've been noticing my feelings about them.  They aren't freaking me out too much in a "wow, you're overconfident that you're going to have a baby" way, so they're staying there for now.

Will we be part of a nursery?

*****

My new baby niece is so precious.  We were over at my brother-in-law's house for a total of 5 hours visiting on Sunday, and I held the baby for approximately 4 of those hours.  I generously let the mom hold her some, and even let my husband hold her for a tiny bit.  I was hoping that my husband's holding her would speed up his manological clock.  It's about time he felt some urgency, right? 

After I'd gotten my fill of 2-week-old baby adorableness (NOT—give me more babies to hold, STAT), we returned home to news that our neighbors had adopted a newborn baby girl.  It was a surprise to us, although not entirely unexpected; we'd speculated for years that they were fellow infertiles. 

On Monday night, we inflicted ourselves on the new parents to see the baby and share infertility war stories.  Baby was gorgeous and they filled us in on their adoption journey.  WOW.  I do not know how they persevered because they really went through hell trying to adopt, and that was after several years of infertility. 

We've been neighbors with these people for 4 years, had them over for beers numerous times, and didn't realize they going through infertility (beyond our private speculations).  It makes me sad.  Someone really needs to come up with an infertile handshake that we'd use to identify one another.

So, yeah.  Two newborns in 2 days and I've got baby fever BAD.

*****
I am totally seeking validation in my decision to stop TTC.  People (not you guys) keep reacting as if I'm making a rash decision based on inadequate data.  I get what they're saying to a point, but People, have you not been around the past 4.5 months when I had severe pain every single day?  Have you not heard about the five different pain medications I'm taking because none are effective enough on their own?  Have you not seen my body morph from fairly athletic to soft and rounded?  Have you somehow missed seeing me shuffle around painfully?

I'm irritated because this morning, my PT refused to offer an opinion about my prognosis in terms of pregnancy.  She said we wouldn't know anything until I got better from this, just wait and see how it goes, ask your physician, blah blah blah. 

Ok, totally not helpful.  You are the person probably most intimately aware about my condition, so give me an opinion!  Yes or no!  Don't tell me I'm a crazy person for thinking that biological kids are out of the question at this point.

Obviously, I'm struggling with being in limbo.  I want decisions to be made, action to be taken, and a baby to land in our laps.  I'm sick of this waiting crap.

Update (I wrote the PT stuff yesterday):  my sister reminded me that my PT doesn't know (or has forgotten) about all the TTC hardships we've experienced, which partly explains her not understanding why we'd stop now.  She seems to see my case as being based around my last hysteroscopy, which is only part of the picture.

Most of my stress can probably be attributed to dread about my upcoming doctor's appointment with Dr. Fourth Opinion.  If you count the urgent care doctor who tried to troubleshoot with me, this next appointment is the fifth doctor's opinion, but who's counting.  Anyway, totally dreading this next appointment.  Dreading the unknown; will he give me new information about my condition or just reiterate everything I've already heard, making this a waste of a $40 copay and my morning?  Will he agree to take on the pain management aspect of my case?  And, most importantly, what does he think carrying a child in my irritable abdomen would do to me?

Maybe I'm most afraid of not getting any answers.  I hate limbo.  Appointment is Monday.

****

And now, a baby birdie photo.  These are house finches who grew up on my front porch.  They're huge and I expect most of them to fledge (leave the nest) today.  I am not kidding, our yard is an aviary.  This year, on our 0.5-acre lot, we've had visible nests of house finches, bluebirds, cardinals, wrens, and mockingbirds.  So cool.

They tend to sit with their beaks open when it's really hot.

The Art of Achieving the Call Back

I spent the past several days waiting for my pain doctor to call me back.  I left a message every business day for 4 days and somehow (<cough> bad nurse) they kept getting ignored . Yesterday I finally received a call back from my doctor—hallelujah—and I wanted to share with you some tactics that did and didn't work.  Not surprisingly, the pain clinic operates similarly to the RE's—wish I'd figured that out earlier. 

When you need your doctor to call you:

1.  Staring at your phone does not make it ring.  I've practiced this technique long enough to know with certainty that it doesn't work.  Some people learned this in high school, but apparently I was not one of them.

2.  Thinking about the phone sometimes makes it ring.  True story:  one day when I was driving home from work, I wondered when my RE would call and she called that very minute.  WEIRD.  The trick to making this work is thinking constantly about when they'll call; your obsessing and their calling back are bound to coincide eventually.

3.  If your cell does not get reception in your house, you're screwed.  My husband and I are about 10 years behind in cell phone technology.  We use prepaid plans and I don't have a smartphone, and our phones are primarily for emergencies.  I felt all superior about this in a hippie, "I'm so present and in the moment that I don't need technology" kind of way until all this pain shit hit the fan.  It turns out that giving out three phone numbers can confuse health care professionals and result in your missing their calls.  Before you miss their calls, you will wander around your house trying to find the place with the most bars, leaving your phone in that place, and racing to it when it rings.

4.  Call early in the day.  Messages stop being retrieved at 3 pm and even earlier on Fridays in my clinics.  Learned this one the hard way when I left a message at 3:02 on a Thursday.  Turned out my doc didn't work on Fridays, so it was a long wait for a return call.

5.  When all else fails, page the doctor on call.  But don't expect to get connected on the first try.  You might have many setbacks before you speak to a doctor, including the hospital operator hanging up on you, the doctor not answering the page, or the wrong doctor being paged (I don't need to speak to an ophthamologist now—probably one of the few specialists I have no questions for).  Paging the doctor on call is your ace in the hole.  Don't overuse it.

After 4 business days of leaving messages and staring at the phone, plus a weekend of pain and sulking because I knew I wouldn't get a call then, my doctor finally called back and adjusted my meds.  It took paging the resident on call and asking him if there was anything else I could be doing to get a call back.  I'm so done with the pain clinic.

Update:  the triage nurse left me a nasty voicemail this morning.  Sounds like she was reamed out by the doctor so she called to "apologize," which consisted of her telling me that I must have done something wrong when I left the messages and/or lied about how many times I've called.  She checks her messages frequently and always follows up that day.  Riiiiight.

ICLW, Fourth Opinions, and Flowers

Hi ICLWers!  Welcome to my blog and thanks for visiting.  I'm 35, 3 years into TTC, 2 early miscarriages, and currently recovering from a uterine surgery.  Apparently I suck at recovering because I've been in nonstop pain for the past 3 months.

Because I like showing off my flowers, here's a pic of one of my hydrangeas. 

Lace cap hydrangea (I think)

My work trip sucked the life out of me yesterday.  Woke up at 3 a.m. to catch my flight, and came home at 3 p.m. and crashed.  Slept for 11 hours and it felt like heaven.  But I still don't feel right.

Predictably, my pain is horrible today.  I knew that walking around airports was bound to do me in, with all the stress walking is apparently putting on my stupid recovering pelvic floor muscles.  Feeling so hopeless about ever recovering.  What the hell am I doing wrong?  I do my PT religiously, I take the pain meds, I rest like crazy...

I need to call the new clinic where I'll seek a fourth opinion, but I am loathe to make any more doctor's appointments.  Loathe.  I do not want to start off in a new medical system, go through all of their screening interviews, paperwork, and office visits, just to end up in the same place.  I'm convinced the new clinic won't be able to help. 

At the same time, I know I desperately need a main provider who will coordinate my care.  Everyone (ie, my RE and I) thought my pain doc would be my core doc during this, but she's obviously not up to the role.  I think she's competent enough—not pelvic-specialized but still capable—but she does not seem to want to monitor me as much as I need.  She keeps setting my follow-ups every 6 weeks, when I know (and apparently am not communicating) that I need to see someone at least every 3 or 4 weeks.  I'm not sure what's going on, if I'm supposed to keep calling her to follow up sooner, or if she genuinely doesn't understand how badly I'm doing.  Major communication gap.

Update:  That was easy.  Called the fourth opinion clinic and they already have me set up for an appointment.  They've mailed me the notification.  Ok, people.  Would have been nice to know by phone, but whatever.  The appt is 7/23, which is sooner than I expected to get in.

*****

When my parents were visiting last week, my mom said that my great aunt had a premonition about when we'd have a baby <cue eye roll>.   She had a feeling we'd have a baby in August, and since this August is definitely out, it could be next August.  I told my mom that I don't buy into premonitions, hunches, or intuits about our future baby, and remember how my mom had had a feeling that we'd have a baby by Christmas?  That is, Christmas 2010?  And that I'd had a strong feeling I was pregnant about 569 times since we started trying, and I was wrong 567 of those times?  Stupid hunches.  They've gotten me nowhere.

*****

To end, here are some more flowers.  Thanks for stopping by, and I'm looking forward to reading more of your blogs!

Gardenia

Hydrangea (the more standard kind)

First It's a Room, Now It's a Clock

As if the vagina room analogy wasn't enough embarrassment, my PT informed me today that my vagina is also a clock.  Wonderful.

Both analogies are my abbreviated way of saying that we've figured out that some of my pain issues are associated with pelvic floor muscles.  Not a shocker, but at least we're making progress.  My PT isn't sure why I'm also having upper abdominal pain, so we're treating that as a separate issue.

The pain doc switched me from Neurontin (gabapentin) to Lyrica, and I can't tell if it's helping at all.  What it is doing is making me incredibly sleepy.  My max coffee dose per day is usually one cup and then the jitters set in, and now I'm up to four cups and still feel like I could take a nap.

Dr. Third Opinion helped us zero in on specific pelvic floor muscles, and he reiterated the pain doc's pronouncement that PT is where it's at.  He gave me yet another medication, a muscle relaxant, which I think is helping.  Maybe.

Pain doc has referred me to another clinic (YAY!  More appointments!  More copays!  More internal exams!), where I'll get a fourth opinion.  The main reason she wants me to go there is to get a more integrated treatment plan.  She thinks the doctors and PTs work more closely there, and the clinic itself specializes in pelvic pain.  The clinic is part of a different health system, so getting my extensive medical records transferred over will be interesting.

Some of you have asked if I've tried certain treatment modalities, and it seems like a good time to list the ones I've tried.  Here goes.  The ones I'm currently using are underlined.

• Medications
• Lyrica
• Neurontin (helped but not enough)
• tramadol
• muscle relaxants
• NSAIDs (didn't seem to help)
• narcotics (only help in the short term; not a good long-term strategy)
• the Pill (epic fail; cried constantly when I was having a pain flare)
• Supplements
• pycnogenol (recommended by an acupuncturist to help relieve uterine cramping; super expensive but is maybe helping)
• Alternative therapies
• abdominal massage (helps a good deal; go once a month)
• acupuncture (effective during the session but not afterward; stopped going)
• meditation, including mindfulness, guided imagery, and affirmations (hasn't been effective for pain relief; I'm a fan in general, but am not able to stay awake during it because of the meds I'm taking)
• Movement (or lack thereof)
• PT, including stretching, strength training, ice, and heat (seems to be helping)
• not moving, aka lying down
• walking (generally makes the pain much worse; struggling to find the right balance)
• Other
• living my life, including working, etc
• distraction, including but not limited to reading, watching TV, talking to friends, etc

A common theme here is expensive.  Holy cow, the bucks I've been shelling out.  Treatments that don't seem to help are given a fair shot and then ditched.

My parents just left our house.  They'd stayed for a week, and today is my first day back at work.  We mostly hung out on our back deck and watched baby birdies.  The baby cardinals and baby bluebirds have left their nests, but two mommy house finches are sitting on nests on our front porch.  Busy birdies!  I'll get some more photos up soon.

Looking forward to ICLW!  Am not looking forward to waking up at 3:30 tomorrow morning for my work trip.

Awkward Analogies with Dr. Third Opinion

I'll give you the deets later for my appointment with Dr. Third Opinion, but for now, here's a list of Things I Wish My Doctors Hadn't Said.  I'll start with Dr. Third Opinion's classic:

1.   Imagine that this room is your vagina.  Could you come up with an analogy that doesn't have us standing in my vagina?  It caught me so off guard that I couldn't remember which wall was my cervix.

2.   This exam will make you feel like you're peeing on the table.   Said to me before an abdominal CT scan.  At least they warned me.

3.  Is there any chance you could be pregnant?  This one is especially good when asked right before a D&C.  Um, yes, but with a dead baby?

4.  We don't know what's wrong with you.  Variations include "None of our patients have this much pain after surgery" and "I'd be happy to refer you to one of my colleagues."  Sometimes, this is followed by #5.

5.   One option is for you to go to the ER tonight. This one made me transition from mildly concerned to freaking the f*** out.

6.  We need to do surgery to see how messed up you are inside.  Listen, buddy.  Infertility has screwed with my body image enough without you adding "messed up" to my negative self-talk.  The doctor who said this a while back wanted to get my laparoscopy business.  He didn't get it.

****

A short update:  Pain sucks, but family visits mean that my food supply is solid.  I have a work trip on Thursday and I have to get up at 3 a.m. for my flight.  It is going to be a very rough day.  Will my coworker need to push me in a wheelchair through the airport?  Stay tuned.

To the Coworker Who Saw Me Crying Yesterday

I truly appreciate your concern, but yesterday's pain episode isn't out of left field for me.  I haven't kept you completely up to date on the status of my pain because I'm bored with it.  I want to talk about other stuff, do other things, and actually work.  But I've never been close to being rid of the pain since my surgery 3 months ago.  It just ebbs and flows.

Another reason I haven't wanted to talk about it is because I don't want to open the floodgates.  That's why I may seem detached and unemotional when I talk about how I'm doing.  If I really tell you, if I really let my guard down, I may start crying and not be able to stop.  I've cried enough on my own and am not a huge fan of doing it in front of other people, especially at work.

Yes, my pain was severe yesterday and still is.  But I don't think it's ER-worthy.  In the past 3 months, I have had dozens of doctor's appointments to confirm that I'm not dying or criminally insane, and I don't think they would tell me anything different today. 

I have a call into my pain doctor but the asshole clinic isn't calling me back.  On the triage nurse's message, she says that they'll get back to you ASAP.  If you leave multiple messages, it will delay their response.  If you call after 3:00 pm, they won't respond until the next day.  I called at 3:02 yesterday.  They say prescription refills can take up to 48 hours.  What do you bet they aren't including weekends as part of their estimate? 

So I suppose I'm expected to either suck it up and deal with pain at 7 or 8, or go to the ER and wait hours to be seen by someone who can't offer me a better diagnosis.  I'd rather suck it up.  Call me crazy, but I don't really want to rack up more medical expenses for no reason, especially after the $1200 (after insurance) appointment at a psych clinic that determined I'm not a drug seeker.

I will be getting another opinion soon, this time by a surgeon at the clinic where I had my endometriosis surgery.  No, there is no way I'm having laparoscopic surgery again, not after the past 3 months., but maybe this doctor will have a new idea for what's going on.  Probably not, though.  The physicians I've seen already are probably among the best in the state, if not the region, and I trust them.

I have an idea of what brought on this flare, but, no offense, I'd rather not share it with you, you being a coworker and all.  There are some things I'd just rather not disclose about my lady parts.   I do have a few boundaries.

As to the question of whether my pain is under control, well, it's complicated.  It's been under control for the most part lately with the multiple non-narcotic prescriptions I take for it, but when you saw me crying uncontrollably, it was not under control.  I have not yet figured out how to anticipate every new throw my condition will hurl at me.

So I'm sorry for not keeping you in the loop.  Your support is amazing and the love so many people are directing my way is what's keeping me going.

Thanks,
Cry Baby

Happy Anniversary to Me

My 3-year TTC anniversary is coming up in August, but I feel a bit like a fraud for saying that.  We haven't actually TTCed for the past year in any sense of the word.  No timed intercourse, no IUIs, no IVF.  I did deal with healing from a miscarriage, waiting on our lost baby's chromosome testing results, and undergoing two surgeries with sucktastic post-op recoveries.  And yet, even after a horrible year for my body, I find myself trying to write off the past year as if it doesn't count as time TTCing.  Part of it is not wanting to seem like I'm fronting around other IFers.

I've heard lots of sentiments similar to mine in the IF community; IFers who have taken breaks and imply that their months not spent TTCing don't count.  Friends with PCOS have said that since they didn't ovulate during the first year of trying, it didn't actually count as trying.  Or they only ovulated 3 times in a year so somehow, implying that they only get credit for being in pain part of that year. 

The pain-minimizing phenomenon really jumped out at me at the first meeting of my infertility support group.  We started off introducing ourselves and telling everyone where we were in the process.  I was about 1.5 years in at the time and hadn't started treatments, while everyone else had 3-4 years of TTC under their belts, often with IVF.  I felt like a fraud—who was I to claim I'd suffered when these women had been through so much?

Although I saw them as legitimate IFers, the group members were creative at finding ways to minimize their own struggles.  They'd say things like, "We've been trying for 4 years but we weren't really trying that entire time—we took time off between treatments."  When it was my turn, I found myself saying, "I've only been trying for one and half years and we haven't started treatments yet.  We're early in the process."  I'd had a miscarriage and a laparoscopy, but I needed them to know that I realized I wasn't in their league, pain-wise.

Although pain minimizing drives me a bit crazy—we've all been through a lot—all pain isn't equal.  Mali wrote a great post about this recently, emphasizing that this doesn't mean we shouldn't grieve, just that we need to keep some perspective about it.  So true.

I talked about perspective recently with my therapist, who says there are two ways to look at a personal struggle.  To paraphrase and probably oversimplify it, you can concentrate on how much worse you have it than everyone else, or you can focus on how others have it worse than you.  Clinical outcomes, however they were measured, tend to be better for those who concentrate on how others have it worse.

Lately, even with my ongoing pain, I've mostly been thinking lately about how others have it worse.  I'm in a gratefulness phase, which has definitely not always been the case since we started trying.  I feel like I have a pretty good perspective about all of this, but I'm not going to minimize what I've been through.  I'm 3 full years into TTC and it still sucks. 

*****
On the topic of gratefulness, you all constantly surprise me with the thought and love you put into writing comments.  You may not be huggers and I'm not even super huggy myself, but your comments feel like big hugs coming through the screen.  I tear up while I read them and reread them when I need support.  Thank you. 

I welcome feedback if I'm saying something ridiculous, too.  If I need to have my thoughts rearranged, let me know.  In a nice way. :)

*****
I'm going on the Pill in the hope that calming down some of my monthly hormonal fluctuations will decrease my pain.  An additional benefit is that it's birth control; with the pain meds I'm taking, I can't safely get pregnant.  A huge drawback is that the Pill tends to turn me into Crazy Town, weepy and prone to temper outbursts.  People need to steer clear of me for the next few months.

When I talked to my RE about getting the Pill prescription, she seemed really surprised that I'm still in this much pain.  It scares me to be this much of an outlier; she's essentially telling me I'm the 0.01%.  I think I freak her out—I have been in constant pain for 3 months as a result of her performing surgery on me.  And she doesn't seem to know what to make of me.

My pain doc seems really sure of my diagnosis, though.  She hasn't shared the medical terminology for it, but it has to do with my history of pelvic pain, endo, and surgery sensitizing the nerves further.  I haven't asked her about my prognosis, but I need to.  Big time.

So I have the expert opinions of two doctors.  One is unsure of my diagnosis and worried about me, and the other says I just got screwed genetically and I'll eventually get better (at least, I hope she thinks I'll get better).  I'm starting to think a tad about getting a third opinion, although I'm not sure if it's necessary.  Pros are that it could give me peace of mind, help me get out of pain, and prevent this kind of shitstorm in the future.  Cons are that it's yet another appointment and copay, and I'm actually pretty confident in my pain doctor.  My pelvic pain was on the rise even before this latest surgery (thank you, blogging, for helping me remember that), and the uterine balloon was the straw that broke the camel's back.  I'll be thinking about a possible third opinion.

*****
In addition to "celebrating" our 3-year TTC anniversary, my husband and I had our 5-year wedding anniversary yesterday.  :)  Love you, baby!


Alright, I need to go read my book club book on our deck.  It's 80 degrees, sunny, and the mosquitoes haven't taken over yet.  Have a good one!

The Good and the Bad

I'll start off with the Good.  I'm so thankful for your thoughtful comments on my last post about knowing when to stop TTC.  I haven't responded to all of them—taking some time to process them and work has been crazy—but I truly appreciate your taking the time to stop by and comment.  The comments warmed my heart.  Hearing from friends I hadn't heard from in a while, reading some of your thoughts about stopping...I'm constantly amazed at the warmth and thoughtfulness of bloggers and other commenters, most of whom I've never met in real life.

A Woman My Age asked if I'd considered alternative therapies for my pain, such as acupuncture.  I did weekly acupuncture sessions for about a month after this surgery.  I got amazing pain relief during the sessions but unfortunately the pain always returned in full force a few minutes after I got up from the table.  I considered continuing the sessions in case they were helping in ways I didn't comprehend.  I asked my main doctors whether I should continue acu treatments; they're both pro-acupuncture in general.  My pain doctor said she expected the pain relief to last beyond the session, and since it wasn't lasting I should stop.  At $90 a session, I was a little relieved.

This week, I'll be starting physical therapy and biofeedback at the recommendation of my pain doctor.  I'm curious to see what PT will recommend.  I don't know much about biofeedback but I'm willing to give it a shot.  In the midst of all of this, I've also been half-heartedly meditating.  My therapist wants me to do it daily but I'm having trouble committing to it.

Also in the Good category is that my RE (reproductive endocrinologist) gave me some good news this week.  She did a regular ultrasound of my unbelievebly screwy uterus and things actually looked good.  Before the most recent surgery, there was a pucker where one side of my uterus seemed unnaturally drawn to the other side.  I think it was scar tissue, adenomyosis, something of that nature.  The pucker is now gone.  I'm breathing a small sigh of relief, not a huge one yet, because the real picture of how I'm healing will be a 3D sonogram.  Not sure when I'll feel good enough to do one.

Which leads me to the Bad.  I'm still feeling shitty.  The pain feels like it's here to stay, regardless of my doctors' reassurances that I will get better someday.  Instead of hurting in the uterine area, it mostly hurts under my ribcage, which totally weirds out my RE.  The pain doc still acts blase (accent over the "e"—don't know how to do them in Blogger) about it all, like she sees uterine surgeries resulting in burning upper abdominal pain all the time.  She increased my gabapentin dose, which seems to be helping already.  She also gave me a great answer to my question about how much activity I should be doing.  She said resting too much was more of a concern than being too active, so I should try to be active within reason.  So that was actually a Good buried within the Bad.  I'm glad to be given the green light to being more active.

Blogging and commenting has had to take back seat lately as projects at work keep piling on.  I'm a medical writer, and I've been lucky lately to be writing about oral hygiene.  Sometimes it's much worse—chronic diseases, diarrhea, or...oral contraceptives.  Fortunately the oral contraceptive project got put on hold because I did not enjoy writing about the magic of conception.

Anyway, I'm here and reading your posts even when I'm not able to comment much.  Hope you're all having a good weekend!

Open-backed Surgical Gowns and Other Issues

Right before my first post-miscarriage D&C, the nurses had me walk from the pre-op area to the OR in an open-backed surgical gown.  Down a hallway, past other patients and healthcare providers, holding the back of the gown closed so I wouldn't show my butt to everyone.  It was completely humiliating and not what I needed while I was losing a baby. 

I've had lots of surgeries and procedures, especially recently.  I realize we have to tolerate certain indignities for the sake of efficiency.  And I'm all for efficiency...to a point.  I want the kind of efficiency that means a nurse will at least make sure I've tied the back of the gown correctly.

My husband took me to the ER two weeks ago as part of this whole post-op pain drama.  That was an eye-opener.  At first I thought the patients waiting with catheters in their arms must be in especially bad shape, but after getting an uncomfortable catheter of my very own, realized it was par for the course.  Going to the ER means you get to sit around with a catheter.  There's no mistaking the patients for the caregivers.

One of the most surreal parts of my ER experience occurred when a nurse handed me a urine cup while I was still in the waiting room.  She instructed me to provide a sample using the public bathrooms.  Not wanting the 100+ person audience in the waiting room to know I was providing a pee sample, I used my purse to transport the cup to and from the bathroom.  I know, ew.  Of course, my efforts to hide the cup were in vain, anyway, because I had to do a very public hand-off to the nurse in front of everyone. 

I'm not blaming individual nurses or even managers.  But it sucks.  I'm trying to retain some of my dignity through this whole stirrup-filled infertility odyssey, but I'm starting to feel like I've lost it.

Navigating work with post-op pain has been embarrassing, too.  I am so grateful for the outpouring of support I've received, but am having trouble just accepting it.  I've been shuffling around the hallways in obvious discomfort.  I start the day sitting at my desk and within an hour, am working from a couch in an unoccupied office because sitting up is too painful.  People fuss over me and bring me extra pillows.  Coworkers kneel next to the couch to discuss projects.  I hate it.  I know we're all sick sometimes and it's not a sign of weakness, but it's not the person I want to be at work.  I want to be vibrant and efficient and strong. 

The gabapentin I'm taking is definitely helping the pain.  It's just not helping quickly enough to suit me.  I'm adjusting my expectations of how long this recovery will take, but sometimes I want to pitch a temper tantrum and insist this all ends now. 

If you haven't headed over there already, stop by Cristy at Searching for our silver lining to offer your support.  She's going through her second miscarriage after an FET.  She is one of the kindest bloggers I've come across and I can't believe she's going through this again.

I Have Other Organs Down There

I appear to have a UTI from the catheter used during my surgery.  Went in on Friday for my fourth clinic visit of the week and had tons of pain when my main doc pressed on my bladder.  She was thrilled to give me a likely diagnosis and said gleefully, "I can treat a UTI!"  As opposed to any number of non-gynecological things that could be going on. 

Quick recap if the state of my uterus isn't at the top of your list to worry about:  had surgery 3/9 to remove scar tissue and more of my uterine septum, had a balloon put in my uterus, excruciating pain, ER visit threatened, balloon removed, more pain, more days off work, clinic visit times four, pain.

A urinalysis was normal on Friday but a culture came back on Saturday growing a common UTI bacterium, so I started antibiotics last night.  Pyridium seems to be helping a bit.

If this is indeed a UTI, it's my first.  What a horrible feeling.  I never would have expected this level of pain.  On Friday night, it was particularly bad and I went to bed planning my funeral.  I had taken Ambien to help me sleep, and was afraid I'd die during the night without realizing it because I was knocked out.  I told my husband to check my breathing before he went to bed and asked if he thought my doctor would attend my funeral.  Because it might be awkward, you know, as the attending physician.  For the record, I love her and would be happy for her to come.

I do not love one of the fellows who is in training.  First it was the mixed messages, telling me not to take narcotics one day and then later instructing me to take more narcotics so I can increase my mobility.  I'm fairly medically inclined, but with all the pain, meds, and stress of the past week, I needed some clearer communication.  This physician also told me, the day before my main doc suspected the bladder stuff, that I should take hot showers for the pain and stop bothering him.  Not in so many words, but that was the gist.

I'm tired of having to page the fellows on call.  I mean, I've enjoyed getting to know the hospital operators—we're on a first-name basis—but I really just want to be back at work.  I'm definitely leaving that sentence in so I can reread it when I'm hating work. 

I'm afraid I'm not out of the woods yet.  My doctor said she's perplexed still.  My urinalysis should have come back with increased leukocytes or whatever if this is a UTI.  If the infection is in the very early stages and my leukocytes haven't kicked in yet, I shouldn't be in this much pain.  My bladder could have been irritated by the fluid they injected for the procedure, but should be getting better by now.

Another theory before the bladder stuff emerged is that this is an endo flare caused by the hormones I've taken in the past month, but it doesn't feel like any endo pain I've had before.  I know that doesn't exclude endo, because it can surprise even us veteran sufferers, but I'm just not having any of the uterine crampy pain I typically have with it.  I think I was crampy while the balloon was still in place, but not since it was removed.

Someday I will blog about something other than pain, but for the time being, it's my world.  That and Netflix.

The Balloon from Hell

Yesterday started with an innocent enough mix-up.  I got up at 5:00 to get ready for my surgery, showered, and woke my husband up.  That's when I realized it was actually an hour earlier than I'd thought and my alarm clock had Sprung Forward two days early.  Somehow it had the date wrong, wrong year and everything.  Ok, fine.  Took a nap for an hour and thought it was no big deal.  Maybe it was a sign of worse things to come.

The procedure itself was fine.  My veins behaved beautifully for the IV insertion, I passed out pleasantly (isn't it always pleasant?), and wasn't in too much pain afterward.  My doctor removed some more scar tissue and needed to insert a balloon to promote healing, so had to trim back my septum farther.  The balloon was inserted and 5cc of fluid put in to prevent the uterine walls from fusing back together and forming more scar tissue. 

My husband recorded his conversation with the doctor afterward, and I have yet to listen to it.  I've looked at the detailed drawings, timeline, and uterus pics, though, which is about all I can handle right now.  Looks like I'll be taking estrogen and then estrogen/progesterone this cycle, having a period, and then having another saline infusion sonogram.  I have the option of doing letrozole at the same time as the 3D sono, but I'm not sure where I stand on that.

Back to yesterday.  I hadn't picked up my post-op prescriptions yet because my work week had been busy, so we stopped by the pharmacy.  The resident who'd written the prescriptions hadn't written a quantity for oxycodone, which started a drawn-out drama of trying to get it fixed by phone while we were waiting.  About an hour later, meds in hand, we were able to head home.  Pain and cramping started to set in for real.

Thirty minutes later, I was writhing on the floor in agony.  It sounds totally melodramatic but I'm actually not exaggerating.  Pain meds weren't helping so we headed to my doctor's office 30 minutes away.  Seriously do not know how I made it through the trip, I was so out of my mind with pain.

I saw a fellow, who with my main doctor's blessing removed 2 cc's of the fluid from the balloon.  It gave me immediate relief but not enough, so he removed another cc.  I started bleeding, and the doctor said some of the pain had been from blood building up that couldn't be expelled.  I went home feeling much less pain and no inclination to writhe.

That's when the bleeding picked up.  A couple of hours later, I called the fellow again, and he said I'd have to go to the ER if the bleeding continued to be heavy.  That definitely freaked me out—did not want to go there.  Thankfully, the bleeding tapered some by bedtime and I pretended to sleep.  Couldn't sleep more than 30 minutes at a stretch.

Called the fellow again this morning and the current plan is to removed the balloon tomorrow morning.  We'd planned on removing it on Friday, but I can't deal with this level of pain for that long.  I wouldn't be able to work, for one thing.  The doctors say it's probably been in long enough to do some good, anyway.

I haven't really been able to process the fact that we'll be waiting at least one more month, if not more.  I can't say I'm surprised, though.

Quick Blogger question that's been driving me crazy:  some of the blogs I've followed through Google Friend Connect don't appear on my main Blogger Dashboard page or my Google Reader.  I end up missing those posts and it makes me sad.  Any ideas what's going on?

Still Benched

My hysteroscopy yesterday dealt us another setback and I'm feeling numb. 

My husband dropped me off at the clinic 30 minutes early because he had a work commitment he couldn't get out of.  I told my sister to come pick me up around 10:30.  That's kind of how it is these days.  Get a ride from whomever is available, go home, sleep it off.  Repeat.  Procedures and anesthesia seem to be my new normal.  My uterus has been poked around in five times in the last 6 months, three of those with anesthesia. 

So having one or two more procedures in the next couple of months won't make much of a difference, right?  Yeah, right.  Waiting for just an opportunity to conceive has become really hellish.

My doctor removed a little more scar tissue yesterday.  She hesitated to call it scar tissue, like maybe it wasn't quite bad enough to fit that criteria, but I'll call it that for lack of a better term.   One area in the upper left corner of my uterus just doesn't want to behave.

I need to have another hysteroscopy next month to make sure it healed.  My doctor gave me the option of trying to conceive this month, since my follicles are rarin' to go after taking letrozole, but I can't.  I told her I'm not in a gambling mood.  If scar tissue puts me at risk of miscarriage, why would I risk it?  I'm desperate but not reckless. 

My procedure next month will need to be performed at the surgery center instead of the clinic.  My doctor wants to have access to special surgical scissors in case she sees more scar tissue.  If she does remove more scar tissue then, she'll insert a balloon afterward to promote healing.  Then there was something about removing more of my septum so that the balloon is more effective, something that didn't make total sense in my Versed/fentanyl haze.  She's going to call me today to discuss it further.  Oh, yeah, and I would need to have yet another hysteroscopy in April to check out the healing.

In addition to the whole waiting thing, which SUCKS, I'm not psyched to go to the surgery center again.  My surgery in December was there and while everyone was super nice, it was quite a process.  Lots and lots of instructions and phone calls before the surgery, hard-core anesthesia that required a longer recovery, and an audience of anesthesia people, surgical nurses, and random people off the street who wanted to see my freakish uterus up close and personal.  I much prefer feeling less like a circus act at the clinic with just my surgeon and one nurse in attendance.

My husband wants to do another letrozole cycle next month in case everything looks good at uterus imaging session number 252.  I was on board at first but am not feeling it anymore.  First of all, I have zero hope that my uterus will look stunningly clear.  Its track record lately isn't very good.  Second, letrozole isn't a walk in the park.  Taking it makes me giddy with hope, and I'm just not willing to be let down by an aborted attempt like this month.  Not to mention the side effects.  They admittedly don't get bad for me until the last day of taking it, but at that point my fatigue becomes crushing and I almost start crying in the produce department because I can't find my husband.

I'm pretty devastated.  I knew we might not be able to try this month, but holding onto hope that we could was keeping me going.  Two or three or four months isn't a long time in the scheme of things, and when you aren't the one going through it, it's really not.  But when it's your life and your body, it feels like it will never end.  In the next few months, I'll turn 35, lose my opportunity to have a 2012 baby, and possibly get closer to losing my mind.

I have to say, though, you guys are helping to keep me sane.  Your support has been tremendous and is making such a difference in my life.  I am enjoying getting to know each of you.  Thank you!   

3D Sono and the Faulty Ute

I'm seriously thinking about trading in my uterus for a new one.  All of our problems in the 2.5 years of trying seem to come from my getting a generally crappy one.  There's its evil endometrial tissue that migrates into my pelvis and gloms onto other organs.  Scar tissue, souvenir of a D&C.  A subversive septum.  Possibly harmless (friendly) fibroid and, of course, a pesky polyp for good measure.  My ovaries aren't superstars but they're Meryl Streeps compared to my Kristen Stewart uterus (love ya, KStew, but hope Twilight wasn't your peak).

I had my post-op 3D saline infusion sonogram today and everything was not as I'd hoped.  I'd visualized a squirt of saline illuminating an almost flawless uterus, except for the resident thyroid and screwy arcuate shape to give it some character.  The doctor would high five me and she'd show her students images of my uterus as a success story.  "This woman had a REALLY messed-up uterus, but I fixed it and now she's had 10 children!"  Or two children, something like that.

Instead, 30 minutes of medieval torture, complete with two balloon and saline catheter sessions, yielded inconclusive results.  A fuzzy spot near my left tube wouldn't infuse properly.  Well, shit.  It could be leftover period stuff because I'm only on day 5.  Or it could be more scar tissue and I WILL HURT SOMEONE if we have to go into waiting mode again, have another surgery, etc.  Of course we want to optimize the uterine environment, but what about optimizing my sanity?  If I lose it, I'm blaming it all on my ute.  

The plan for now it to continue with letrozole and have a hysteroscopy on Monday.  Depending on what we find then, we'll either try this cycle or not.  I'm not willing to admit we're out just yet.  I can't.  It would be one thing if I knew we'd only be knocked out one cycle, but my last surgery benched us for 3 or so.  My doctor is optimistic that it's nothing, but I'm freaking out, of course.

My lovely sister will have to drive my twilight-sedated body home from the procedure, the third time she's done this in the past few months.  My husband's schedule is really inflexible on Mondays, Wednesdays, and Fridays and isn't jiving with my doctor's inflexible schedule.

Perhaps uterine water torture and iffy fertility-related news wasn't a good set-up for having lunch with a friend who is about 40 weeks pregnant.  Said friend is officially lapping me, or close to it, since I started trying when she was pregnant with her first.  Seeing her was actually not as difficult as I'd imagined (hadn't seen her in ages), but still stress-inducing because my prolonged torture session caused me to be late.  Way to force your very pregnant friend to wait around for you.  Yeah, I know.

Please send your healthy uterus vibes my way on Monday.  I mean, let's hope it's healthy already, and that we can see that it's healthy on Monday.

New Year, New Regrets

I mistakenly thought I'd coast into my surgery last Friday with a limited amount of nerves.  Ha!  Guess you never really get used to handing your life over to strangers wielding potent anesthetics and scalpels.

Fasting, IVs, and anesthesia should be old hat to me after having gone through several procedures.  My first surgery several years back was completely unrelated to my reproductive organs, although like this recent surgery, it also involved a septum.  My nasal septum was veering off course and required some work to fix.  For the most part, it wasn't too traumatic, except when I nearly passed out from the horror of My First IV.  The My First Surgery Barbie would have a huge bruise on her arm as a badge of honor.  There is nothing normal or natural-seeming about having a needle sitting in you and feeling cold IV fluids enter and creep up your arm.  Disgusting.

Several procedures and a laparoscopy later, IVs are easy peasy.  I'm almost to the point of being able to watch them put it in.  Ok, that's a lie, but at least I'm not fainting anymore.

At my pre-op appointment, a resident gave me several prescriptions associated with the surgery.  Narcotic, check.  Hormones to promote healing afterward, check.  Misoprostal...wait a second.  Misoprostal is often used in lieu of D&Cs to induce miscarriages.  I had a visceral reaction when the resident casually mentioned I'd be taking it.  Apparently, in addition to inducing miscarriages, it can be used to prepare your cervix for procedures to prevent future miscarriages.

A lot of us have an unfailing memory for dates associated with our losses and infertility.   On 12/30/09, I started spotting with my first miscarriage.  On 12/30/11, I was on misoprostal and headed into surgery.

It was pretty uneventful physically.  I came to and said, "Is it over already?"  Cramps came and went for a few days afterward but were manageable.

I'm left with a lingering sense of regret and "should have knowns," though.  My doctor removed two things, a septum and some scar tissue, I feel like I should have explored further last year.  We'd been assuming the septum was too small to cause any issues, but maybe it was an issue all along.  The scar tissue, possibly caused by my first D&C, was hinted at during my HSG a year ago.  The tissue was partially blocking the opening to my left tube and I have to wonder if it's a coincidence that both of my pregnancies were from the right.  It pisses me off that this might have been missed by some previous doctors. The third item on my doctor's extraction list was a polyp.  I'm pretty sure it was a new development so at least I can keep it off of my guilt list. 

How do you find the balance between researching adequately—pursuing diagnostic testing and second opinions—and becoming completely consumed by it?  I want to believe that we've done enough experimenting recently on my body (ok, and on my husband, who had one vial of blood drawn after my last miscarriage) at this point to move forward with trying again.  My obsessive, scientific nature drives me to check out all options, though, and it's hard to find the balance between constant research and trusting my doctor.  I know that at some point, the data collecting has to stop. 

That's where I'm at this first week of 2012.  Wondering if we've covered all our bases, regretting that we didn't address some of these issues earlier, and hoping an embryo will soon make itself at home my newly renovated uterus.  

If all goes well with my recovery this month, we'll start a letrozole cycle in early February.  My first and only letrozole cycle to date resulted in a pregnancy so it's hard to not put all of my hopes and dreams into this upcoming cycle.  After being in a holding pattern for several months, I'm beyond ready to get this party started again. 

I've missed the Blogosphere this past month.  Work and the holidays have been just about all I can handle recently.  I've been trying to keep up with reading and commenting as best I can and hope to see everyone more this month.