The Unexplained

March 6, 2014

Recently [this post has been sitting as a draft for some time but that doesn’t really matter since this topic recurs on a regular basis] there was a discussion in the IF corner of the Twitterverse about whether it is better or worse to have an explanation for your infertility. This is an old topic that surfaces every now again – usually when someone who has unexplained (or not well-explained) infertility decides to stop treatments. She knows that stopping is the right choice for her but she still doesn’t know WHY fertility treatments didn’t work. It seems to be frustration piled on top of anger piled on top of heartache.

My infertility is explained – thrice over. Well…explained may not be the best word for it. But I have diagnoses. I can give a name to the cause of my infertility if not a name to the cause of the cause. Giving a name to a thing can give you power over it – or a sense of power. I have names I can bandy about: Diminished Ovarian Reserve, Endometriosis, Adenomyosis. I have test results like AMH, FSH, countless ultrasounds, MRIs and now a pathology report that validate those diagnoses.

In the end, no one can tell me why I have these issues. No one can tell me what caused them. Not even one of them has a known cause in my case.

But I have names to call out and curse. Unfortunately they are all too long to produce any catchy battle cries. “Curse you, Diminished Ovarian Reserve!” just doesn’t have a good ring to it.

Am I lucky? Maybe. Probably. Most days I think so because I’m a person who likes to know things. Also, in the world of fertility treatments I am a rare bird. I didn’t have to make the difficult choice to stop fertility treatments. My RE broke up with me and said your uterus is Swiss cheese please stop the madness. Most people who have gone through IVF don’t have such concrete evidence of what is wrong with their reproductive organs.

And so I am somewhat lucky. I can’t imagine not having a name for what is wrong with me or having doctors that say, “It’s just bad luck, why don’t you try again?”

Actually I CAN imagine not having a name for what’s wrong with me as I did go through that before getting the endometriosis diagnosis. For any health issue, fertility related or not, it can be mentally and emotionally debilitating to have symptoms and no diagnosis. Doctors start giving you that look. That look that says maybe it’s all in her head. And after a while you start to believe it, too. But for those of you with unexplained infertility your only symptom may be empty arms and a broken heart.

And for you I have a proposal. I have names but no ultimate causes. A name is just a word given to something. Why don’t you name your infertility? Give it a name. OWN IT. That’s why I named my uterus. Maybe it won’t work for you, but for me it has helped to actually embrace it, own it…then beat it the fuck down. I got to do that literally through surgery, but words can work too (The pen is mightier than the sword and all). So give your infertility some manner of -osis and start yelling at it.

Just pretend you’re Meredith Grey and invent something like “Hostile Uterus” (OK it’s not entirely made up). Or be cheeky and call it Raymond – because everyone does NOT love him – or some other name you dislike. I can see how screaming at George or Shirley that s/he’s an ugly sonofabeach and should get the fuck out could be therapeutic.

Or not. You decide.

[DISCLAIMER: In case it wasn’t glaringly obvious to you, it is not my intent to poke fun at people with unexplained infertility, merely to have fun with what could be a therapeutic process in dealing with it.]

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For those of you who follow me on twitter, you’ve likely heard the news already. I had a baseline ultrasound and bloodwork this morning. It’s CD4 of an induced cycle – meaning I didn’t ovulate last month so I had to take progesterone to induce a period.

Results?

The Good: I have NINE antral follicles. When I was first diagnosed with POF (Premature Ovarian Failure)/DOR (Diminished Ovarian Reserve) I had TWO. So this is definitely good news. My personal best, that I know of, is thirteen (although I think it went higher I never got specific counts). But I’ll take nine.

The Bad: Six of those nine are on the ovary with no tube. Leaving only three on the ovary with a tube.

I would prefer the opposite. But I’m still thrilled with nine. Based on my last AMH of 0.34 I was hoping for six (but not really confident I’d make it). In the past, although my AMH bounces around like it’s not supposed to, it always seems to correlate to my current AFC (antral follicle count) – When my AMH was 0.1 my AFC was 2 so I kind of just multiplied by three. Very scientific. 😉

The Weird: One of the six follies on the non-tubed ovary measured 12mm. And my lining was triple-stripe. Despite the fact that it is CD4 and I am still bleeding (although it’s been super light as usual) it looks as if I’m set to ovulate soon. The doc is not overly concerned about that, however. As your reserve dimishes, your cycles become wonky (don’t I know it!) and weird things happen. Although I have NEVER ovulated early, there’s always a first time for everything.

So I’m concentrating on the fact that I have nine follicles total.

There are still some eggs in my basket. Amazingly.

[Again, I wonder about changing my twitter handle.]

Assuming my HSG looks OK, I think the RE will approve this crazy IUI plan for next cycle. Which apparently may come earlier than expected. Although, knowing my body, and more importantly my ovaries, I’m not holding my breath waiting for early ovulation.

This will be my third HSG. I hate them but I guess it’s necessary. Depsite being suspected of having some tubal disease because of the 2nd ectopic pregnancy, I fully expect my remaining tube to be open and clear. Oddly, I trust it more than I do a Day 3 transfer.

Or maybe not “oddly” given past experience. And the fact that it makes no logical sense to me to suspect my tubes of being diseased just because my last embryo happened to wander up in to one. The docs put more stock in where the embryo journeyed to than where it was coming (running?) from. Personally, I suspect my uterus is just some really horrible inhospitable place and that’s why my embabies run screaming from it to anywhere else that might be more inviting.

Or maybe they really are just directionally challenged.

[Again, I ask for someone to create EmBabyGPS – the tiniest GPS known to man, so easy to use a not-yet baby can do it, and it comes preprogrammed with a map of the uterus.]

Regardless of what may or may not be going on with my embabies and girly parts…

…if you want different results – try something different.

My RE thinks I’m nuts

July 20, 2012

I think I figured something out today.

Deep down, I think Right Guy and I both feel like we’re not going to get our BioKid.

It’s been difficult enough to grasp my own logic behind this choice to try IUI. It was even more difficult trying to explain it to my RE. I guess I flubbed it a bit.

My RE said it made her a little sick to think we were going to abandon our frosties. It hadn’t occurred to me that us wanting to do an IUI would make it seem like we were abandoning our embabies. I quickly corrected her and told her that was not the case.

But it really drove home, to me anyway, the realization that not only do we not expect an IUI to work – which is why we’re already planning on FET later – but I don’t think we expect FET to work either.

Whenever we do our last FET, we’re done.  I don’t think it makes sense to do another IVF if FET doesn’t work. And it might not even be possible. I fully expect FET to either not work at all or end with me losing more body parts – possibly the one vital for pregnancy. Unless we win the lottery and decide to use a surrogate, I think we’ll just use the money we have saved for adoption.

So we want to try IUI while we still can. Before I get any older or lose my remaining tube. Or my uterus.

But I don’t really expect any of it to work.

At least the RE agreed, begrudgingly, to an IUI – provided I pass some more tests. Her hesitation seems to be mostly about managing expectations and we convinced her that we understand the odds are… not good. And that’s putting it nicely. Also, I had answers for all her questions about how I expected this to go down with one tube (monitor to know which side) and whether I was envisioning oral meds or injectibles (oral, we don’t want a repeat of the last injectibles cycle). Apparently most of her patients don’t really understand how all this works and would have high expectations even if she told them otherwise. I think I proved that I’m not that patient.

I think Right Guy’s presence also helped my case. He didn’t say much, but he was clearly on board with me and nothing she said changed his mind. I had asked him to take the time to come so that he could either take my side to convince her, or, after hearing what she had to say, convince me to abandon this harebrained scheme. And also for moral support.

Did I mention my blood pressure was 133/88? Anxiety. I haz it. Well, I HAD it. I feel better now.

nutcracker

Cracking Up? Going Nuts?

I once had a doctor tell me to get pregnant right away or I would never have kids.

I was twenty.

He was old-school and this was way back when they knew NOTHING about endometriosis. Except that it existed.

My endometriosis has never been that bad, fortunately. And I decided not to marry the guy I was with at the time after envisioning our life together. The one where I had kids but was completely miserable because he and I were totally wrong for each other.

I always knew I would have issues getting pregnant. I never understood what, exactly those issues would be, but I knew they’d be there. But I guess I also thought they would be more… defined. More clear cut. As in, you CAN’T have kids so don’t bother trying. Or you CAN but you’ll just have to work at it a bit. Not this seemingly never-ending spiral of you can’t, oh wait you can but you can’t carry, or maybe you can but you have to go about it just so, or maybe you can’t, or maybe we just don’t effing know.

Fast forward. Wrong Guy and I decide to TTC. Within a few months of ditching the birth control pills I’m in horrible pain and end up on Lupron while he’s in Afghanistan. When he comes home we pretend to start TTC again. I say “pretend” because, although I was no longer on Lupron I also wasn’t ovulating. Lupron is the devil. Fertility work-up shows he’s shooting at about 10%. Doc says there’s no chance we’ll get pregnant with a sperm count like that. Then he tells me he’s in love with someone else and asks for a divorce.

Ah, the ups and downs of life. And my prospects for kids. It all really is a roller coaster.

Behemoth roller coaster in Canada

Fast forward again.

Still devastated from the divorce, I work my ass off to get my life back on track. I go to grad school, graduate, get a good job and buy a house. All in preparation for one day adopting on my own. At that point I’d given up on romance/partnership/marriage.

So, of course, that’s exactly when I meet Right Guy. And start to think maybe, just maybe, there’s still time and a chance to do the natural family thing.

Cue hot flashes. I ignored them for far too long. I was too embarrassed to admit them to Right Guy. I remember him commenting how sweaty I was one night. I said it was just the crowded bar we were in. I finally confessed to him after waking up soaking wet in his bed in the middle of the night – I had soaked his sheets. Caused by my night sweats. All I could do was cry and apologize profusely for “wetting” his bed and dirtying his sheets. He just held me.

Later we discussed it. Being a doctor he offered the “I’m sure it’s not menopause” speech. Him being a doctor was partly why it took me so long to tell him. It’s weird (well it WAS weird) to be diagnosed by your partner. Anyway, I made an appointment with my GYN. Who also gave me the “I’m sure it’s not menopause” speech. But ordered bloodwork just to check. And came back with the “It IS menopause and you’ll never have kids” speech.

Then I go see an RE who says that it’s a long shot, but it could happen. I start HRT (hormone replacement therapy) and the hot flashes subside. I start to feel somewhat sane again. But I don’t ovulate on my own. The eggs, they are gone.

We try some Clomid. It makes me ovulate. Sort of. As long as I use an estrogen primer (you can’t be on estrogen while taking Clomid but you can use it just before you take the Clomid). Gradually my eggs begin to reappear. I go from two antral follicles to about eight. Go me!

But I’m still not pregnant so we move on to injectibles. That cycle I think I started with THIRTEEN antral follicles. Which is how I ended up with SIX eggs in play and did a last minute conversion to IVF. And then got a BFP!

Woo hoo! This worked! I am going to have a BABY!!!!

Um no. I’m not. Instead of a baby, I’m going to spend ten days in the hospital and get chemo (methotrexate) and spend a total of five months psuedo-pregnant as we watch my beta HCG fall back to zero and get more chemo whenever it decides to stop falling. And, oh yeah, now I have another fertility hurdle called adenomyosis and this crazy ectopic might happen again. Oy.

Irony of all ironies? I start to ovulate on my own. No more hot flashes. But my uterus is damaged so I’m not allowed to TTC.

Pops dies of his 3rd cancer.

One full year after our surprise IVF I am cleared to TTC and do a FET. I get pregnant AGAIN!!!

Wow. Apparently I get pregnant pretty easily. Well, as long as I do IVF.

Um, no. Not so much. It’s ectopic. AGAIN. But this time it’s a run of the mill ectopic. More or less. The chemo doesn’t work fast enough and I end up in surgery having my tube removed. But I was allowed to go home afterward so no hospital stay at least.

My body returns to regular ovulatory cycles with no hot flashes. But I’m benched for three months.

The very first month we are cleared to TTC what happens? The hot flashes return and ovulation, while still happening, is not occurring regularly.

Sometimes I really want to graph the major events in my life. In 3D. So I can capture not just the highs and lows but all the twists and turns. I bet it would look like the craziest roller coaster EVAR.

roller coaster toy

Well maybe not EVAR. My life has really not been that horrible in the grand scheme of things (I’ve always had a roof over my head, a loving family, etc). There have just been a lot of ups and downs and twists and turns. I love roller coasters. But I always wanted a normal, run of the mill life.

I think what bugs me most is the suddenness and/or the unexpectedness of the ups and downs and twists and turns.

I didn’t see the divorce coming. People usually see it in hind sight. Although I can see a few things now that I didn’t see then, none of them spelled D-I-V-O-R-C-E. I was totally blind sided on that one.

Pops’ cancer? I can’t say that was a total surprise in and of itself. It was more of a surprise that he survived it. Twice. We kept expecting him to die. And he kept not dying. That was… mostly… a good thing. But then you get to a point where you start to think, “Maybe he’s not going to die of cancer.” And that’s when he did.

Same thing with my infertility. My body keeps doing strange things. I don’t know what’s real anymore. Am I really entering menopause in my 30s? I thought so before and my body somehow ‘bounced back.’ So now that it’s tanking again, I have to wonder, “Is this really it? Or will I make another comeback?” There’s really no predicting it. It defies modern medicine.

There is a part of me that just wants it to be done. Get me off this ride. Make it stop.

But I’ve posted that before: Get Me Off This Crazy Ride
Jane, get me off this crazy thing

But that’s silly. This is life. Life is not going to stop being crazy. Something new, and potentially crazy, is just around the corner. It might take you up, it might take you down. Or sideways. Or upside down. Life is like Space Mountain – a roller coaster in the dark. You can’t see where you’re going, you’re just along for the ride.

The Earthquake Is…

July 11, 2012

Over? Still going?

OPKs are the devil. They do not work for me. It’s not the LH surge that makes me ovulate so much as the days on end of detectable LH. Apparently it stops trying to surge and just hangs out. Waiting. Apparently for an earthquake.

And then… maybe I ovulate. Maybe I don’t

The one day I came closest to having a positive OPK apparently did not cause me to ovulate. I present Exhibit 1.

The chart above gave this cycle the nickname ‘The Earthquake Cycle.’ [thank you @DeadCowGirl] I have to admit that I should have known better. That OPK wasn’t TRULY positive. It was almost positive. It was the closest I got to anything resembling positive. But it would seem that ovulation did not occur on the day after that test. Nor on the next day (which was when I thought it happened due to physical symptoms implying mega left ovary activity).

I should have known better. REALLY. In recent months I have not ovulated anywhere near CD14 (although I did for a few months – about 6 months ago). Even medicated, it’s usually more like CD16. But then, things are prone to change in my body – frequently and without prior notice – so my optimism got the better of me. How exactly that happened, I do not understand since I am not an optimist. Not that I’m a pessimist. I call myself a realist.

The glass isn’t half empty. Nor is it half full. It is simply a glass. With some liquid in it. Liquid that occupies roughly half the space within said glass.

But I digress.

I’m not entirely sure if CD1 came or not. I suspect not. I present Exhibit 2.

chart2
Previous cycles have shown me that I usually have a temperature dip just before ovulation. And this chart seems to indicate that my body TRIED to ovulate on CD 15/16. But didn’t quite make it. And again around CD20.

I’ve had anovulatory cycles before. But this was by far the screwiest (if it was indeed anovulatory). I definitely had symptoms – things that usually happen between ovulation and AF’s arrival. The girls swell. I get a little moody. I have cramps. CM changes. All that happened. What didn’t happen? No hunger, no chocolate cravings, no chin acne. Although lack of acne could be due to lack of chocolate.

What I’ve never had happen before, EVER, is random spotting. I’ve always seen the warnings about how when you start a new pill, or any form of birth control, it can cause spotting. I have NEVER had spotting that wasn’t leading up to AF (or trailing her as she left). EVER. Not once.

Until now. Maybe. Unless you want to count 10 days of on and off spotting as AF.

Welcome to the beginning of menopause. Again. What a mind fuck. I’m right back where I was 2 years ago. Except this time I fear I really am getting worse instead of better. But I guess that’s another post.

A Bitchy Conversation

June 15, 2012

So. The jury is still out. As expected. Today’s OPK was darker than last night’s. But lighter than yesterday midday. So EITHER last night’s stick was faulty OR we’re in the same game as usual.
Which goes something like this:

CD1-12
FSH: Yo, Ovaries! What’s up?
Ovaries: zzzzzzzz
FSH: Um… hello? Am I talking to myself? Let me raise the volume so you can hear me.
Ovaries: zzzzz…Is someone calling us?…zzzzzz
FSH: Wake the fuck up!
Ovaries-Lefty:zzzz…What? Huh? Hey Righty, why don’t you answer that?…zzzzz
Ovaries-Righty: zzzz… What? Why should I? YOU answer it. I’m tired…zzzzz
FSH: Will somebody please answer the fucking phone!?!?!?!
Righty: zzzz… Meh. OK, FSH, calm down. Don’t get your panties in a wad. I’ll work on it.
Lefty: zzz…Wonderful. I’m going back to sleep…zzzz
FSH: Finally! You some lazy ass bitches down there!

CD12-21ish

LH: Knock, knock.
Righty: lalalalalalala I can’t hear anything.
LH: Hey Righty, what’s going on?
Righty: I’m making eggs right now, come back later.
LH: Hhmmm… But I want some eggs.
Righty: So?
LH: Like, right now.
Righty: Sorry, you can’t have any. They’re not ready yet.
LH: What the fuck is taking so long?
Righty: Hey LH, Imma let you finish and all but right now… STFU! I said LATER!
LH: *sniffle* OK, I’ll come back later. *slinks off crying*

CD18ish-23ish

LH: I’m baaaaaack!
Righty: I’m still cooking.
LH: I don’t give a shit. I came for eggs and I’m getting one.
Righty: Fine. Here. Take this one. It *might* be ready. Hope you don’t get salmonella, asshole.

And this is how my body achieves ovulation. Which is at least better than two years ago when the conversation was more like this:

FSH: Yo, Ovaries! What’s up?
Ovaries: zzzzzzzz
FSH: Um… hello? Am I talking to myself? Let me raise the volume so you can hear me.
Ovaries: zzzzz
FSH: OK, I’m cranking this shit to 11. Or maybe even 16.
Ovaries: zzzzz
FSH: WTF, I give up.
LH: Man, FSH, you give up too easily.
LH: HEY OVARIES!!!!! Trick or Treat?!?!
Ovaries: zzzzzzzz
LH: Trick then. I’m cranking this shit to 300!
Me: Totally think I’m ovulating because OPK says so.
Ovaries: zzzzzzzz
Ovaries: zzzzzzzz
Ovaries: zzzzzzzz
Ovaries: zzzzzzzz
Ovaries: zzzzzzzz
Me: Goddamnit. Time to take the progesterone.

Hope is a Beeyotch

February 19, 2012

I hate my body.

A few years ago it decided to put me through hot flashes and night sweats ultimately leading to a diagnosis of Premature Ovarian Failure (POF). I was told I’d be in full on menopause by the age of 40. I mourned the loss of my fertility. I struggled with trying to accept the idea that a child of my own was a 1 in 1000 chance.

Then my body made a comeback. And while I wasn’t “cured” and my doc still expected I’d experience menopause earlier than usual, the situation no longer seemed as dire. I went from severe hot flashes, night sweats and not ovulating to ovulating on a more or less regular basis and no more hot flashes.

It gave me hope. I was able to do an IVF cycle – a feat I was originally told my ovaries weren’t capable of accomplishing.

That cycle, of course ended with the ultra-rare, gonna-publish-a-paper-on-it ectopic pregnancy. Followed by a year of healing and sitting on the TTC bench. And “regular” 30-32 day cycles. My periods were super short but at least it seemed my body was functioning. My hope increased.

Queue FET. Due to insurance coverage, I decided to do a FET as soon as I was medically cleared to TTC instead of trying naturally. Result? Another ectopic. Followed by 3 months on the bench due to methotrexate (even though I ended up having surgery also). My hopes of being able to CARRY a child were diminishing but at least it seemed that maybe I still had eggs to work with. Not that I can afford a surrogate.

For those three months, I had regular 28 day cycles. Still short periods but super regular for three months running(!). My hope increased.

And now, the hot flashes are gradually returning. I’ve been trying to explain them away but I know what they are. And while there may still be hope of a 32 day cycle, the 28 day normal cycle is not happening this month. This month, the first month I am medically cleared for TTC, my body decides to go back to being a fuck up. Fertility Friend thinks AF *might* arrive in 5 days. I’m doubtful.

And now I feel like I have to mourn the loss of my fertility all over again. Or at least that’s how it feels. It feels like it’s happening ALL OVER AGAIN. When does this roller coaster end?

In addition to all my reproductive challenges, my body is rebelling against me in other ways as well. My back is effed up (bulging disc that was seen on MRIs of my uterus and has been causing me pain for 2+ years). My knees are now creaking and cracking more than your breakfast bowl of Rice Krispies. I could barely walk last night my knee hurt so bad (it’s at least better today).

A plethora of reasons exist for the weight gain I’ve experienced over the past few years and particularly the last year. Some of those reasons are my fault, some due to extenuating circumstances and some completely beyond my control. It’s entirely possible that the extra weight is causing/exacerbating the back and knee issues. But exercise is near impossible due to the pain. And it’s not like I’m obese, just carrying more than I should.

SO… to recap… I’m fat, infertile and have hot flashes. Cue decrease in sex drive. Which I suppose is handy since Right Guy works all the time and is too exhausted for sex anyway.

Off and on for the past year I’ve been thinking of changing my handle. StolenEggs just seemed like maybe it didn’t apply anymore. After all, I ended up with more eggs in my basket than I originally thought I had. Maybe they weren’t really stolen – just misplaced somehow. Nope. I think they were stolen. Perhaps twice. Sigh.