Flipping The Script: Solidarity, not Pressure


When I was actively going through infertility and treatment, I heard a lot of stories.  I think everyone who goes through any sort of medical or social crisis hears stuff like this, you know, the “the doctors told them they’d never get pregnant/recover/etc., but they did!”  Sometimes this was helpful, particularly when related firsthand by the person the story had happened to, and often, those storytellers (whether in person or on blogs) would point out that while it had worked for them, they knew it wasn’t necessarily going to work that way for others.  It was solidarity, not inspiration.

Unfortunately, this wasn’t always the case.  Sometimes the stories were told more prescriptively (often by people that they hadn’t happened to), in the “if you just hang on, it will happen!” or “if you do _______, you’ll have a baby!”  Often, it occurred when I was already beating myself up and wondering what I could have done differently or when we were making painful decisions whether or not to continue treatment.  Those stories made me feel guilty, my decisions unaccepted, and left me second-guessing whether or not I’d done “enough”.

I’ve lurked this year for National Infertility Awareness Week, mostly because reading everyone else’s blog posts proved interesting and the topic – “Flip the Script” – is one I’ve had to mull over a bit.  Finally, though, I’ve realized the script I want to flip: be careful with stories.

A couple of years ago, I realized I’d become that cliché, walking urban legend of infertility stories: IVF works on the third embryo transfer after losses, rare, tragic complications, and out of that, a beautiful, healthy child.  Getting spontaneously pregnant with my second with no interventions or treatments only added to it.

I’m grateful for how things worked out.  But it is by the most bizarre circumstances and strange, against-the-odds events that I am where I am in life right now.  There is absolutely nothing that is able to be generalized to someone else struggling with infertility.

It’s not because of my hard work.  It’s not because of my persistence.  It’s not because I’m somehow “special”.  It’s not because of my good attitude or positive thinking (please, ask anyone in my life – I did not accept infertility/PCOS with any grace whatsoever, still dislike many pregnancy announcements/going to other people’s baby showers except under special circumstances, and hated pretty much every moment of treatment).  It’s not because of “baby dust”.  It’s not because I deserved it more than anyone else.

Truthfully, I have no idea why things worked out the way they did.  I’m grateful, but I really don’t have an answer to the “why/how”.  And I resent the idea that if things had not worked, I would have been any less worthy.

Basically, what I’m saying is this: I hope no one (including me) ever uses my story as a cudgel or as a prescription or as a “this could be you too if you just keep trying!”  Because anyone who is struggling with infertility, needs to take a break, or needs to consider their options (including resolving without children), does not need that pressure or guilt.  It’s great to tell our stories and truths.  But there’s a way to do it without generalizing out-of-the-ordinary happenings to others or giving false hope.

Let’s flip that script, straight up.

This post is a part of Microblog Mondays.  If you want to read more, please head over to Stirrup Queens!  Thanks to Mel for originating and hosting.  


That Thing With Feathers


Hope is the thing with feathers

That perches in the soul,

And sings the tune without words,

And never stops at all…

– Emily Dickinson


We never really did much natural cycling when we first started trying to conceive in 2012.  My cycles were so incredibly abnormal right from the start that we had done our initial testing, gotten the PCOS diagnosis, and started seeing an RE before the one-year mark.  Even when we’d do a few months between medicated cycles and then ART cycles, I didn’t have normal natural cycles.

Once I quit breastfeeding (or, more accurately, attempting to breastfeed), the spot-bleed-spot-bleed-no-normal-periods came roaring back for several months.  Since that was my normal before my daughter was born, I wasn’t particularly surprised, just frustrated.  In some deep, dark recess of my mind, I’d genuinely hoped that giving birth would “fix” my reproductive system.  I tried a bunch of supplements, stayed on met.formin, lost weight, and nothing changed.  I saw my OB/GYN, got a prescription for birth control pills, picked up a pack, declared myself done with natural cycles, and then in a fit of pique, decided to pull a Scarlett O’Hara: “I’ll think about that tomorrow”.

Every day thereafter, I reprised.  I kept up with the supplements and met.formin.  Until one day, the bleeding stopped.  I marked the date as cycle day 1 and shrugged.  I wasn’t too hopeful.  I had an ultrasound in December because I was having pelvic pain and wondered if I had a cyst.  My ovaries had the classic “string of pearls” appearance of PCOS.

I started spotting on day 21, but then on day 28, had an actual round of bleeding that was easily identifiable as a real period.  I marked the cycle again and waited.  The bleeding stopped in a timely manner.  Again, I had a period on day 28.  The acne also started to let up a bit.

Well, this is new.

In late February, we decided to see what would happen if we ditched any form of preventing pregnancy.  In April, unsure if my body was even making the right hormones or trying to ovulate despite having cycles, I ordered some cheap OPKs.  They’ve come up positive each month for an LH surge and are appropriately negative otherwise.  I have a basal body temperature thermometer, but with my odd hours (I work nights twice a week) temping has not clarified anything.

A couple of weeks ago, I realized my met.formin prescription was going to run out, so I called the RE’s office to get that prescribed.  Since I was on the phone with them, I figured that I’d go ahead and schedule my saline sonogram.  It’s a bit on the early side since we’re not planning to transfer until next spring, but I reasoned that if anything showed up as an issue, then we’d have some time to figure out next steps.

Today, I saw Dr. E, my RE, for the sonogram.  When Dr. E checked my ovaries, he noted that they don’t look polycystic the way they usually do.  I looked at the screen.  I know the appearance of my ovaries well, and the usual bunch of immature follicles was definitely missing.  Dr. E asked about my cycles, and I told him about the positive OPKs, regularity, and the supplements.  “Well, keep it up,” he said.  “It seems to be doing something good.”  He told me that it was hard to say given my history if I’d get pregnant naturally, but it was worth continuing and he hoped it would work out for us.

It’s somewhat promising as infertility situations go.  Definitely an improvement in many ways, but is it enough to actually get pregnant? Even with ICSI and a surfeit of eggs, we really don’t make a lot of embryos – and the ones we do make tend to be about a day behind.

I really want to be hopeful.  I really want to think that even after all this, the “old fashioned way” might be truly possible.  I really want to think that even if this doesn’t work out, one of the embryos will work next spring.  There’s no doubt I have seen (and had) longer odds and stranger things work out.

At the same time, I also know all too well the painful wounds that appear when hope flits away and reality unwelcome rushes back.  As I told Arthur recently, “Everyone keeps saying you need hope to live.  But in my case, it usually just f*cks me over.”

That’s where we stay for now in terms of infertility.  In the gray area between hope and not, possible and not, that unsatisfying non-answer.  What I keep reminding myself is that this is a season, not forever – and much of the rest of life is good right now.  Today, though, definitely lightens that gray a little and causes the ‘thing with feathers’ to stir.

Want to read more Microblog Mondays or participate yourself?  Please head over to Stirrup Queens and enjoy!  Thanks to Mel for originating and hosting.  

Oh, Right…Infertility

I like to think I’m not particularly superstitious, but when Arthur and I got down to talking about the nuts and bolts of transferring one of our two remaining embryos in the fall, I couldn’t help it.  I used to love fall.  My birthday is in late October and I’m a huge fan of pumpkin spice everything, jack-o-lanterns, the beautiful days with crisp evenings, and the leaves turning brilliant colors.  However, the last few years have gone something like this:

A few days before my 30th birthday – Diagnosed with PCOS and told that it was “not impossible, but unlikely” that we’d be able to conceive on our own.

31st birthday – In the middle of ovarian stimulation/egg retrieval for the first IVF cycle that ended in miscarrying twins.

Shortly after my 32nd birthday – Arthur unexpectedly lost his job and I started bleeding with the SCH (both on the same day!).

33rd birthday – My brother shot himself.

SO…while I can intellectually accept that all of this is unrelated and probably coincidence, fall just doesn’t seem to hold the good sort of surprises for me.

We looked at each other when I brought this up and I knew as soon as I said it that we probably needed to put the transfer off a couple of months.  Not only did it give us some much needed financial breathing room, it gave me some emotional breathing room.

I don’t know how I’ll handle that first anniversary of my brother’s death.  I do know that the stress inherent in a transfer cycle, mega-doses of progesterone and, if I was lucky, HCG in my system won’t make it easier emotionally.  I also know that it’s not the time to deliberately set myself up for the terrible disappointment of a negative beta, the anxiety of an early pregnancy, or the devastating loss of miscarriage.  If we got pregnant on our own around that time, well, we’ll cross that bridge if we ever come to it, but making a choice to throw a transfer in there is a whole other situation.

I have such mixed feelings surrounding putting transfer(s) off until early 2017.  Relieved because I just don’t know how much more stress/loss I can take right now, and it’s a wonderful chance to get to simply enjoy parenting E (who has become a great deal of fun to interact with).  Hopeful because we have two frozen embryos and some time for natural cycles.  Frustrated because at some level, I’m tired of infertility.  I’m tired of knowing that we likely have about $7,000 – 10,000 in RE bills coming to complete the transfers.  I’m tired of waiting and just want to be finished with the process.

Regardless, I know it’s the right decision.

In a month or two when my met.formin prescription runs out, I’ll probably make an appointment to re-up that and do the saline sonogram to check my uterus for scar tissue or other problems.  I’m hoping sonogram comes back okay, but at least if there are issues, we have some time to mull over options before next spring.

In the meantime, we’re informally seeing if something breaks loose in a natural cycle.  Truthfully, I don’t see this happening.  We needed a lot of medical intervention to get pregnant, have no idea at this point if my left fallopian tube is open, and while I am having surprisingly regular cycles, we never made lots of great quality embryos during the IVF cycles.  I know what the deck looks like, and it’s not stacked in our favor.  At some level though, it’s almost as if I need to try this for a while – if just to satisfy my curiosity and answer the “what if” in my head.

In Which We Have A Conversation With The RE

Right around the time I went to see my OB/GYN in September because my PCOS was causing weird bleeding and fierce acne, I also found myself unable to quit thinking about the two embryos we still have in storage. I had/currently have zero desire to be pregnant right now. At the same time, I kept wondering what the real possibility of a second pregnancy would look like or if there even was a reasonably good possibility of that happening.

Part of the issue is that out of three pregnancies, I’ve had zero normal, term deliveries. Each subsequent pregnancy has required more and more medical intervention. My first miscarriage was sad but routine. My ectopic required follow-up blood draws and monitoring for over a month, and even then I was really pretty lucky when it comes to ectopic pregnancies as I miscarried “naturally” without needing metho.trexate or surgery. The third pregnancy, of course, required a total of 4 ER visits, 2 brief admissions to L & D, innumerable office visits and ultrasounds, 17P shots, specialists, a 55 day hospital stay for me, a c-section and a D&E for retained placental fragments (not to mention the lengthy NICU stay for E).

In other words, it’s not prudent to do things that require actual planning and serious time/financial/emotional commitment such as applying to start my master’s degree until I’m truly done with pregnancy. So after talking with my OB/GYN, I went over to the RE’s office, which happened to be in the same campus and made an appointment to see Dr. E. We had questions about the quality of the embryos, the possibility of scar tissue in my uterus, and what came next. I also needed to know how the embryos were frozen and whether we would do one transfer or two. There’s obviously a financial difference and we needed to know ahead of time so we could plan savings.

We met with Dr. E a few weeks ago and set up the outlines of a plan. Much to my surprise, the quality of the two embryos is quite good. “These are the two best embryos you’ve made,” Dr. E told us. He also told us that the embryos were frozen as individuals, not as a pair.

Dr. E concurred with both the perinatologist and my OB/GYN that while I’m always going to be a high risk pregnancy because of my history, the subchorionic hematoma (SCH) was most likely a one-time thing. There’s no reason to think that another pregnancy necessarily would be dangerous or that I’d wind up hospitalized with a premature birth again. Then we got down to the details of what a transfer would look like for us. “Definitely one at a time,” Dr. E said. “I’d even go so far as to say that given your OB history, this is a medical necessity.”

“Because I’m already high risk and twins are an even higher risk?” I asked.

“That’s part of it,” Dr. E said. He had a theory about my SCH. The causes of SCHs are mysterious and not well studied. There’s some thought that blood clotting disorders can be a factor, but due to my infertility and miscarriage history, I’ve had a number of the work-ups for blood clotting issues and we’re reasonably certain that wasn’t my problem.

I’ve had a total of five embryos transferred. We know for a fact that four of the five implanted (blighted ovum, the baby I lost at 9 weeks, the ectopic, and, of course, E). Dr. E told me that it is somewhat unusual to have such a high implantation rate in IVF. When we did the ultrasound with E and saw only one gestational sac, we all figured that the embryo we’d transferred with E had just stopped developing and not implanted.

Dr. E thinks it’s a possibility with my track record of implantation that that embryo did implant and try to grow briefly, there was a vanishing twin that never got far enough to see on the ultrasound, and that this may have caused the SCH to develop. Dr. E stressed to us this was merely a theory, but when he said it, it made a lot of sense.

We also talked about the state of my uterus. While Dr. E said he couldn’t be certain until he actually did the imaging, he’s reasonably confident that I won’t have extensive scar tissue. Apparently having the D&C or D&E shortly after giving birth makes the risk much higher for scarring but mine was far enough out from my daughter’s birth that the risk was lower.

All in all, it was a good conversation. The current plan is to consider transferring sometime in the fall of 2016, but that depends on how E is doing and how Arthur and I feel about it at that point. We’re done with fresh IVF cycles. At least we have answers to our questions and can make fully informed decisions going forward.

Closing a Door

I made the appointment in late July after one particularly bad episode of bleeding and sadness. Then I almost cancelled it. Surely I was overreacting.

The spotting continued, on and off. Losing a little bit of weight – not ever easy for me – was even more difficult than usual. There was a decidedly tender, achy spot in my abdomen for several weeks, the pain suspiciously familiar, suspiciously similar to the time I’d had a couple of large cysts.

Finally, staring at my face in the mirror one evening, it was all but impossible to ignore. The acne, no matter what skin regimen I used or how faithfully I washed my face, was getting worse.

That was how I found myself in a new OB/GYN office this afternoon, staring resigned at the large pictures of newborns all over the walls, and still in half-denial that I actually needed to be there. I wondered if I should have traveled the hour back to my old town to see my usual OB/GYN, but recognized that this was impractical. Given my somewhat complicated OB/GYN history, I needed someone closer to our new home.

I was familiar with the doctor I’d chosen to see, as most of the OB/GYNs in town had rounded on me during my nearly eight week hospital stay. I still fidgeted nervously. I knew Dr. Z and I would get along well, but I wasn’t eager to discuss what I knew I had to bring up.

The PCOS was back and clearly out of control.

When Dr. Z walked in, once we had gotten to the reason for the visit, I simply gestured to my face. I’d left all my makeup off that morning so that I could show her exactly how bad the acne had gotten. It was obvious that something was wrong with my hormones.

“When was the last time you had your testosterone and other hormone levels checked?” she asked.

“September of 2012, I think, and then I had a glucose tolerance test in March of 2013. I’ve had a few checks of individual things along the way prior to my pregnancy, but not everything” I said.

Dr. Z told me that since pregnancy could change some of those balances, she wanted to re-check a number of hormone levels to see if anything was significantly different so that she could better treat the PCOS. Then we got to what I dreaded: the discussion about birth control pills.

I’d heard of women who got pregnant and essentially had their hormonal issues recede. Some of them even got pregnant again without intervention. I had – however naively – secretly fantasized that I’d be one of them. That my fertility would again be within my control and maybe we’d even do the not-trying-not-preventing thing and one morning I’d realize I hadn’t had a period in a while, do my test, and get to surprise my husband with tears of joy and excitement.

Acknowledging that birth control pills were the best way for me to get my hormone levels normalized as diet, exercise, and met.formin weren’t enough meant letting go of that. I’d always imagined us being able to try on our own eventually a year or two from now when we were ready or if our two frozen embryos failed, as we don’t plan to do any further fresh IVF cycles. Today effectively shut that door in so many ways. Sure, perhaps that could change, but the likelihood is my symptoms and the hormonal imbalances are simply too problematic to choose not to manage. The best way to accomplish that in my particular case is to use hormonal birth control.

It felt like being given an infertility diagnosis again in some ways.

But in other ways, it was completely different. I’ve gone through so much over these last three years. While there is definite sadness, there is also a little glimmer of light. By shutting that particular door, it brings us one step closer to the day that infertility and TTC cease to have so much power over our lives, finances, and family choices.

And I can’t help but think that in the end, for us, that’s a good thing.