Sunday, January 26, 2014

Epilogue: The Retrieval and Beyond

I'm writing this entry almost three years later.  Many of you have asked why I stopped writing-- read on for the explanation.  

The Retrieval
So on Monday, August 1, 2011, I went in for egg retrieval.  I've been in hospitals before for minor surgery, and I have to say that this was a relatively pleasant experience by comparison.  When I showed up at 8:30am, I was led to a quiet locker room where I changed into a gown.  I read US Weekly on a gurney until it was time for the anesthesiologist put me under.  Next thing I remember, I woke up and it was all over.

I felt no pain, just slightly groggy from the anesthesia.  My mom picked me up from the clinic and helped me home (as with all surgeries, they require you to have someone pick you up).

I had no pain from the surgery itself, and was back at work the next day (working from home because I could), but I was extremely hormonal for about three weeks afterwards.  I felt emotionally all over the place, plus I was bloated for weeks afterwards.  I finally got my period two weeks later, and it was a doozy.  It was a full month before I felt "normal" again both emotionally and physically.  I do want to point out that I get pretty PMS-y to begin with, so I probably had a greater propensity to be affected by the hormones.

I got misinformation during my initial training and from the on-site nurse the day of the procedure-- I thought they'd call me the next day to let me know how many eggs were retrieved.  However, when I emailed my usual nurse for the results, she told me that I'd find out either by letter from the RMA embryologist or from my doctor when I had my follow up appointment with him.  What follow up appointment?  Apparently I was supposed to schedule a follow up but no one told me.  The earliest he could see me was over two weeks later (August 17).  I was very annoyed, but what could I do?

Tip: If the office allows it, schedule your follow-up appointment with your doctor prior to your egg retrieval in order to get a timely slot.

The Results
About a week later, I received a letter in the mail from RMA with my results.  The letter said that they retrieved 11 eggs but only froze 10.  It included a little photo of my eggs, which I thought was a bit odd.  It was like a sonogram but waaaay less exciting.  Still, I examined it with a gross fascination-- these little guys came from inside of me and are now sitting on ice somewhere at RMA waiting to be fertilized some day.

Here's the picture of my little eggs (I added the yellow text myself, which will be explained later):

Though I had the letter in hand, my appointment with Dr. C was still ten days away.  I was frustrated.  I had a letter I did not understand and a mildly disturbing photo of my eggs (the M3's looked baaaad) and the explanation still ten days away.  I called one of the nurses asking for an explanation of my results, and I was shocked that Dr. C actually called me back the same day.  I had hardly seen him throughout my entire process, and the nurses seemed to be the first, second, and third lines of defense whenever I had any questions.  We had never spoken for longer than two minutes after the initial consultation.  On the phone, he was all, "Hey.... why didn't you just call me if you wanted to speak about this sooner?"  I wanted to strangle him.

So Dr. C told me that while 11 eggs were retrieved, they only froze 10 because the eleventh was far too immature.  Of the 10, five were fully mature (M1), two were less mature (M2) but had a good chance of being stimulated to maturity, and three were "M3", meaning they were pretty immature and it was uncertain whether they could be used, but they froze them anyway because they might get decent results.  (I mean look at the M3's-- they inspire no confidence that they can become healthy embryos.)  Dr. C admitted that while retrieval of 10 to 12 eggs was expected, he was hoping we'd get more M1 eggs (like seven or eight).

I was crushed.  I understand that every woman responds differently to treatment and that there are no guarantees, but I felt misled.  I underwent this procedure in order to preserve my fertility;  I realized too late is that one good cycle is probably not enough to really do the job.  Here's why:

A good result from one cycle is retrieving eight to ten M1 eggs.  But even with ten M1 eggs, the "fertility funnel" (I totally just made up that term) narrows the number of chances of having a baby:
  • Not all eggs survive the thawing process (I'm seeing survival estimates of 80% to 90%)
  • Only some of the eggs that survive will get fertilized (I'm seeing estimates of 75% to 80%)
  • Only some of the fertilized eggs actually progress to embryo stage (30% to 50%)
  • Then there's the matter of successful embryo implantation (they usually transfer two to three Day 5 embryos with the hope of getting one pregnancy, so I'm estimating 33% to 50% odds)
  • Carrying the baby to term (~85%, though highly dependent on the individual)
This means that with ten eggs, you may have only one, maybe two, good shots at having a baby-- or maybe none at all, if you are just a little unlucky at any stage of the elimination process.  You really need 20 or more good, mature eggs if you want good odds of having a baby, and even more eggs if you want multiple kids.

I only have five good eggs (seven, if you count the M2's).  There's a good chance that after all this, I might have nothing.  This is why I stopped writing the blog.  I was so disappointed with the results and I just couldn't think about it for a while.

I don't know if all clinics are glossing over the fact that one cycle isn't enough or if it is my particular doctor who was remiss.  But if I had this information going, I might have been better prepared for my results and I probably would have prepared to undergo two cycles within a matter of months.  I highly recommend that if you plan to undergo this procedure, you have a very frank discussion with your doctor about whether one cycle is really enough.

When I went in to see Dr. C on the 17th, I asked him why my yield was so low given that both my ultrasound and hormone levels indicated that I should have good results.  The main question I had was whether it might be possible to improve on these results if I were to try again?  For the first time ever, he dropped his facade and seemed almost as disappointed as I was.  He said that with the information he had now, he would have prescribed a different cocktail of hormones, and that he would have stretched out the cycle longer to encourage follicle growth.  It made me feel better that he was being really honest with me about the fact that the course of treatment he had tried just didn't work as he'd hoped-- and it also shows you how little the doctors know about whether and how well an individual will respond to a certain course of treatment.

Although I'm disappointed by my results, I am hopeful that if I do ever need to use these eggs, medical science and technology will have improved enough that the "fertility funnel" grows wider, and that my little eggs have better odds at every stage.

Now What?
Immediately after my procedure, I briefly thought about undergoing another cycle but decided against it.  For me, the experience left a bad taste in my mouth and I was emotionally exhausted.  It wasn't just the disappointing final results;  I found the entire process frustrating.  The office felt like a factory (which I'm sure is not unique to RMA but all fertility clinics).  I got conflicting information all the time, on everything from cost estimates to how long my treatment would take to the types of medicine I'd be taking to how and when I'd receive my results.  Also, there was something about the twice daily shots that made me feel very isolated, and as the days wore on, I had the distinct feeling that I was trying to cheat nature or something.  And then there is the matter of the cost.  At the time, I thought it was a better investment of my time and energy to make a real go of finding meaningful relationships, remain healthy, etc.  I was only 34 at the time, after all.

Now I'm 37.  Almost three years and two relationships later, I'm still single, and single motherhood is now a very real possibility.  I've set a mental deadline of revisiting motherhood when I'm 38, the reasoning being that even if I do decide to try to get pregnant at 38 (assuming I do get pregnant), the kid wouldn't come along until I'm 39, and I might want a second kid.  The idea would be to use whatever eggs are left in my body and use the frozen ones as backup.

But now I'm thinking about freezing one more time.  It still nags at me that while I have some frozen eggs, there probably aren't enough to really "preserve fertility".  Could I get better results the second time around?  Even if my results are the same as the first, I'm doubling my chances, right?  I probably wouldn't have thought of this on my own, but a friend of mine recently decided to freeze her eggs, and I recommended Dr. M at RMA, the doctor who performed my Day 7 check-in.  She's having a good experience with him so far, so maybe there is hope for a better experience.

On a related note, I want to point out Jean Twenge's article about the female fertility in The Atlantic-- she says that the widely accepted notion that female fertility declines precipitously in her 30s is a myth.  This might explain why my friend had her first kid at 40 and is now preggers with baby #2 at 42-- with no reproductive intervention.  Most other women I know who have wanted to get pregnant in their late 30s and early 40s have been able to.  I'm wondering if others are seeing the same trends I am?  Would love to hear thoughts.

Saturday, July 30, 2011

Cycle Day 10: Trigger Day

I went in to the doctor's again this morning.  I saw my actual doctor again, and our interaction was brief as always, so I couldn't ask all the questions I wanted.  He told me that I was ready to trigger, and when I asked how my left ovary was doing, how many eggs were there, he glossed over it and instead served me a bunch of platitudes, "There's nothing to worry about.  We'll get at least ten.  I'm not worried."  Well, thanks, Doc, but that doesn't help placate someone like me who wants to understand what's going on; I don't need to be soothed.

So the nurse called me and said that I should stop all medications at this point except for the Ovidrel injection that I am to give myself at 10:30pm tonight.  Since retrieval is 36 hours later, this means that I will retrieve at 10:30am on Monday morning.

I'm relieved that I can stop the injections!  My lower abdomen area is a swollen, tender, angry battlefield of injections wounds.  However, I still have one full box of Menopur left and a full Ganirelix shot!  Wish I'd ordered more sparingly-- I could have probably shaved $500 off my pharmacy order.

I've been craving carbs, so I made myself a spaghetti carbonara last night, and I shared some pancakes at brunch this morning.

My acupuncture appointment yesterday helped, I think, even if only mentally.  I was feeling tightness on my left side near my injection side from Thursday night, and the acupuncture did seem to help that discomfort go away almost immediately as he stuck in the needles.  I think what also helped is that I felt like I really was doing everything I could to help my cause, so having a sense of my own agency helped me too.  I'm going for a second treatment tomorrow afternoon.  Even if this is only helping me with my stress levels, that's still good.

While my energy level is good, I'm sleeping a lot lately.  Last night I slept a full eight hours, and I couldn't have slept more.  I took a mid-afternoon catnap, and I never sleep during the day!  I guess the meds are really taking their toll on me.

OK, Ovidrel shot tonight at 10:30am!  Then I go back into the doctor's again tomorrow to make sure that the Ovidrel has been absorbed by my body...

It's almost over.

Friday, July 29, 2011

Cycle Day 9: One More Day

I went to the doctor this morning, and she said that it looks like I will probably be on meds for one more day and then trigger tomorrow night for Monday AM retrieval.  Missing Monday is tough as we have some big meetings that day...

I have to go into the doctor again tomorrow for another look to confirm whether I should trigger.

We took a look at my ovaries, and on the right side, it looks like there are about six follicles, one of which is ready to pop.  On the left ovary, we have some less encouraging news-- looks like only three or four of them are growing to the appropriate size (whereas we'd counted six two days ago).  This means that while we saw about five or six big ones a couple of days ago, only three or four have continued to get bigger.  This is bad news because only the bigger ones have a chance of producing mature eggs, and so this means that it looks like I will retrieve fewer mature follicles eggs than before.  There are others, but they're small, and at this late stage, I doubt they will catch up.

I was disappointed to receive this news because now it looks like at most they'd retrieve nine or ten large eggs (whereas it was looking like 12 a few days ago), and probably not all of them will be mature...  Just seems like the numbers are dwindling.  I wonder if dermoid cyst on my left ovary is causing problems?  Am I sleeping on my left side too much or not enough?  My left abdomen did feel unusually tender after my shots last night.   Swollen, almost...

Anyway, what can I do?  It is what it is.  Awaiting the call from the nurse this afternoon telling me how much medication to take.  Have made last minute acupuncture appointment for this evening.  Even if it doesn't help the little ones grow, maybe it will help alleviate the stress I'm feeling.

Morale is low today.

Wednesday, July 27, 2011

Cycle Day 7: I Start Ganirelix

This morning I had another ultrasound and blood test, this time with another doctor who I will call Dr. M.  I really liked him!  Though our meeting was brief, he took the time to show me how my follicles are doing on the ultrasound imaging monitor.  On the screen, the follicles look like globules within a much larger globule (the ovary).  The follicles are not all on a single plane, so you have to move the ultrasound wand around to find them all.

He said that it looked like I had six on the right and five on the left, with three smaller follicles (I forget which side) that "might catch up".  On Monday (Cycle Day 5), I was told that I had five on the right and six on the left (the reverse of today).  On Friday (Cycle Day 2), before I began injections, I was told it looked like "six on each side".  So here's evidence that follicle count is not always consistent from ultrasound to ultrasound.  Think of it like trying to count the number of golf balls and marbles held in a clear plastic bag-- you have to look at the sack from several angles to count them all, and even then, you're not entirely sure if you're counting some twice or missing the ones in the middle, etc.

The nurse called me this afternoon with my new dose:
  • three vials of Menopur at night (increased from two vials)
  • one Ganirelix shot at night
  • same dose of Gonal-F in the morning
I go back in for ultrasound/bloodwork on Friday morning.  The earliest I would trigger (with the Ovidrel) is Friday for Sunday retrieval.  By Friday, I'm hoping we have a better sense of my retrieval date because I have a lot of things I can't nail down at work until I know when I will be out of the office.

I was afraid that the Menopur would hurt more because of the higher concentration of medication, but I did not detect a noticeable difference.  I'm now convinced that part of the reason why the Menopur is so unpleasant is because I am working with cheap syringes.  While it's not painless inserting the needle, it's only when I press it all the way in that it begins to hurt.  I think this is because the area where the plastic syringe meets the needle is not well-formed, and I'm inserting some of the plastic molding into my skin.  Here is a picture where I've circled the offending plastic bit:  

I've asked the nurse if I have to press it all the way in, and she said I must.  Once I experimented with not doing that, and when I pulled the needle out, a little bit of the Menopur bubbled up to the surface.  So I'm not sure I have a choice but to plunge all the way in...

So after the Menopur, it was time for my first Ganirelix shot.  Ganirelix comes in a pre-filled 0.5 mL glass syringe.  Ganirelix must be refrigerated.

I did a quick side-by-side comparison of the Ganirelix against the Menopur.  The Ganirelix has a slightly longer needle, maybe ever so slightly thicker, but less medication to plunge.  I was not intimidated.  However, I had a minor snafu trying to get rid of the air bubble.  Ganirelix is a bit viscous, I guess, because when I tried eliminating the air bubble, the bubble "burst" inside the syringe and rather than fall back in, some of it spray out.  So I lost a couple precious drops of Ganirelix.

Then I had trouble inserting the needle into my skin!  I pressed the needle down firmly against my belly, and the needle wouldn't go in.  I tried several times, once just breaking skin, but it wouldn't go any further.  I might as well have been using a ball point pen.  At last, I pressed down really hard and the needle finally penetrated.  It didn't really hurt, thank goodness.  (I'm telling you, cheap syringes...)

So here's an image of the right side of my belly, so you can see the various injection battle scars, including my first failed attempt at injecting Ganirelix.
I'm running out of room...

Tuesday, July 26, 2011

Cycle Day 6: Halfway Through?

It's still not easy giving myself shots, but I'm getting used to it.  I admit that the Menopur is still unpleasant, and I think that what makes it worse is the ritual of mixing it all up-- it builds anticipation, but not in a good way.  I have a constellation of red dots around my belly button where I've stuck myself with needles.

In terms of side effects, I'm starting to see my belly swell a little bit.  I'm not sure if it's what I'm eating or if it's the medication.  My shoes felt a little bit tight today, so I think it must be due in part to the hormones, rather than simple weight gain.

I've had good energy and spirits despite the stims until yesterday.  Around 6pm, I hit a wall and was so very tired.  Getting up this morning was tough too.  Once I get going, I'm alright, but I do get tired earlier in the day.  I think it's the cumulative effect of the hormones building inside of me now that I've been stimming for four of five days.  I've decided to make myself leave the office by 6pm every day this week, and lots of modified reclined bound angle pose.

Tomorrow morning I go in for yet another ultrasound and more bloodwork.  We'll see how those follicles are doing and whether I need to begin the Ganirelix, which will be a new shot I take alongside the Menopur.  The Gonal-F and Menopur I've been taking are supposed to stimulate the ovaries and help grow multiple follicles; the Ganirelix is supposed to suppress the hormones that would make me ovulate, allowing the follicles to grow to maturity (until I release it with the Ovidrel).  When I start the Ganirelix, I'm supposed to increase my Menopur dose-- I hope that it doesn't mean it hurts more...

Monday, July 25, 2011

Cycle Day 5: I Finally See My Doctor and Learn about the 10:1 ratio

After my morning Gonal-F injection, I went in for my Day 5 ultrasound and bloodwork.

Today was not as crazy as Friday at the office, so I was seen pretty quickly, and I had my bloodwork done and went in for my ultrasound immediately thereafter.

I was mildly surprised to see my doctor come in to perform the ultrasound.  He was not great at wielding the pelvic ultrasound wand (maybe I don't want him doing my egg retrieval after all...), and he said that he saw five follicles on the right side and six on the left.  Say what?  I thought there were 12 the other day?  I asked him if it was possible for us to grow more, and he reassured me that I was doing fine, but that he didn't think we'd grow more.  I asked him flat out what this means, probing him on what this might mean for me.  This is basically what he said, "If we retrieve ten eggs, let's say eight of them are mature eggs.  Among those, at least six or seven should survive freezing and thawing.  And then let's say about four of them fertilize, and we get two good embryos out of it.  That gives you a great chance of pregnancy.  So it's the same as IVF-- ten eggs usually results in one pregnancy."


He acted like I had heard that stat before.  I was bummed.  Even if I got pregnant off of these numbers, carrying a baby to term is another matter, and I really wished I had more chances...

So when I got home tonight, I started researching follicle count some more and learned a few things.

Antral Follicle Count (AFC) refers to the number of antral follicles detected by ultrasound.  AFC is a good indicator of ovarian reserve, and the more you have, the more likely you are to respond well to hormones during hormone stimulation.  I thought that the Chicago Fertility Clinic had a really good explanation of AFC (specifically for IVF, but one can extrapolate a lot of the results for egg freezing), and what you might expect from your cycle depending on your AFC count.  Unfortunately for me, according to this resource, I am a normal-to-low responder...

I began to wonder if my doctor is taking a conservative approach to stimulation.  No judgments, because I've read that sometimes lower hormone stimulation can lead to better quality eggs, but at the same time, I wish I produced more eggs!

I also wonder if it's possible to get an accurate and meaningful antral follicle count during your initial consultation.  Ladies, if I knew then what I know now, I'd drill down on the follicle count during the consultation, ask how many follicles the doctor sees, and corner him or her on what this might mean for your chances of pregnancy.  During my consultation, my doctor said, "You look like you've still got a lot of eggs, and you'd be a great candidate for egg freezing."   Sales pitch.

The thing is that AFC is somewhat subjective-- different doctors and technicians might interpret the same ultrasound slightly differently.  Also, while a good AFC is an indicator that the patient is likely to respond well to hormones, follicles don't grow uniformly.  As ovulation nears, certain follicles will grow more dominant, so even if you started out with, say, 17 follicles at the very start of your cycle, it is possible that by the time you go to retrieve the eggs, there are only 12 dominant follicles (the remaining follicles being smaller and immature).  It is also possible for some that more follicles will sprout up out of seemingly nowhere as the cycle advances (too small to count at the start but caught up with the bigger ones later), but I don't think this usually happens.

Anyway, I'm trying to remain positive because I know that no good will come of fretting about this.  It is what it is, and all I can do at this point is focus positive energies on producing good quality eggs!  I can hope that I beat the odds on subsequent stages of this process (freezing, thawing, fertilization, good embryos, transfer, full term pregnancy).  The number of eggs retrieved is but one factor.

Meds Update:

Gonal-F this morning was slightly painful, but OK.

I got the call from the nurse post ultrasound/bloodwork to say that I should stay at the current hormone levels-- 150 IU of Gonal-F, 150 IU of Menopur.  I asked the nurse if it was normal for the Menopur to sting, and she suggested that I inject in my thigh instead because she's heard that it hurts less.

She lies.  It hurts about as much, and now my left leg is pretty tingly as if it's been asleep.  Nothing to be alarmed about, but I think I'm sticking to injections in the ab area.

I couldn't help it-- I asked the nurse if bubbles in the Menopur syringe was OK.  She said yes.  Fine.

Sunday, July 24, 2011

Cycle Day 4: Getting Used to It

The morning Gonal-F shot was a breeze.  I even primed a new pen, and I didn't have to read the instructions.  I'm a Gonal-F pro.

I was not looking forward to the night time Menopur shot, but I came home straight from watching Harry Potter and the Deathly Hallows Part II, and I must have had Harry, Hermione and friends on the brain, because I mixed the Menopur like a medical professional and wielded the syringe as if it were a basilisk tooth and my stomach were a horcrux.  (For those of you who don't get the reference, horcruxes are evil things that must be destroyed, and stabbing it with a basilisk tooth is one of the few ways to do the job).  I still had felt that unpleasant stinging at my skin, but I plunged away like a pro.  I didn't even ice the injection site beforehand.

I go in tomorrow morning for my Cycle Day 5 ultrasound and blood test.  After we see how my follicles are progressing, I will be given new instructions on my dosage amounts (which may stay the same or may increase/decrease).

I was surprised to get an e-mail back from my doctor today since it is Sunday.  His response to my request that he contextualize my treatment strategy was:

"Your follicle count was good and your hormone levels were normal… 12 eggs would be above average for a single cycle of egg freezing. 
Let’s take a look this week and we can get updated information.
So far so good.."

I admit that I wasn't totally happy to read that e-mail.  I know that he's trying to manage my expectations, but as someone undergoing egg freezing at a relatively young age, I do want somewhere near 12 eggs.  I know that there's nothing I can really do to control this, and I have to be OK with the potential disappointment that my "harvest" may not be especially bountiful, but I have to hold out hope.

Tomorrow, I plan to take advantage of my short time with the doctor (whichever doctor I see during the ultrasound) to drill down on a few questions:
  • What is the follicle-to-mature-egg retrieval ratio?
  • What is the average number of mature, viable eggs retrieved?
  • Do they screen to make sure that eggs are "spindle positive"?  (I suspect yes.)  Does this screen for chromosomal abnormalities?  (I think not).
  • What are the stats these days for converting retrieved eggs into successful IVF babies?
  • When am I likely to retrieve?
In terms of side effects so far, I don't feel like I have many.  I did some light yoga today (doing the modified poses I've written about here), and I did feel like my ovary area felt "heavier" than usual on the left side.  I hope that means the hormones are working...