Monday, December 20, 2010
Physically, the D&C recovery has been easy. Minor bleeding, no cramping. Anesthesia is the way to go. Very thankful my doctor was able to squeeze us into his evening before he left for vacation the next day -- much easier to be on this side of everything.
I took 3 days of methergine, which was the least pleasant part of recovery -- each dose (3x daily) made me feel yucky. Queasy, rumbly tummy, etc. Last dose was this morning, though, so it's behind us. And yay for no shots.
I got a nice email from the nurses at our IVF clinic checking in on us (my ob emailed with my RE pre and post-loss), and scheduling our followup phone appointment for January 12. We'll have the genetic testing results at that point.
I figure until the end of February, nothing invasive is going to be going on. So we'll spend some quality time together, and rebuild a sex life (have to wait two weeks post D&C, though). We have vacation scheduled for mid-February, and we have two full weeks together right now over the holidays.
Thanks for the wonderful messages of support over the past few days. I hope everyone finds some joy in the holidays, be it from the change of season, food, family, or a break from work.
Thursday, December 16, 2010
My ob (who was my preIVF fertility doc) is leaving on vacation tomorrow, but managed to get us in for a 7pm D&E tonight. I'm going with anesthesia for this one since the one in the spring was so traumatic.
I think having the bad news spread over two days made it a little easier to handle. It's all relative, of course.
We'll do the genetic testing again. I'm not sure if there's a way to check my immune system levels, since the Intralipid on Tuesday would have calmed down anything active. But I'd hate to rely on it being all chromosomal issues if we also have some immune stuff happening.
Not the way we wanted to go into our holidays, that's for sure.
Your comments on my last post were wonderful and helped us get through the past two days. Thank you.
Wednesday, December 15, 2010
There's a heartbeat, but it's slow (around 50 bpm). And it's grown, but only a little (measuring 6w3d +/- 4 days.
My ob thinks that my immune system is killing it and/or it's another chromosonally abnormal embryo. So we did an emergency Intralipid infusion (conveniently, his office started doing them about 6 months ago), and we'll go back for another ultrasound on Thursday to see if the heart rate has picked up. If it has, we're not out of the woods, but it would be a sign that the immune suppression worked and is helping. But the embryo could still be abnormal.
Our doctor gave a 50% likelihood that the Intralipid will help. Honestly, I suspect that's optimistic.
It would sure be nice to catch a break one of these days. I almost hope that it's another abnormal embryo so that we don't have to add concerns about my body killing off embryos to the list of problems we have to confront. Isn't that awful?
I'm on bed rest, and double doses of dexamethasone and Lovenox until the ultrasound tomorrow. Trying to just be, and not sink into this too much. There's a chance things will look better tomorrow.
We were worried about the timing of this pregnancy, since we knew we'd be finding out about any issues right before Christmas. I wish we weren't right about that.
Tuesday, December 7, 2010
It's surreal. It feels so far away, even though it absolutely affects every day I'm living now, taking each day one at a time, hoping this pregnancy turns out differently.
It was a loss of innocence. Another one, after realizing that getting pregnant wasn't going to be the no-brainer we always assumed it would be.
It's whatever the opposite of a silver lining it -- the unfortunate side effect of our wonderful TTC community. We all know far more about potential loss than we'd like, and far too many of us live through it. Of the 7 out of 8 couples that aren't infertile, I dare say most of them go through their TTC and pregnancies blissfully unaware of all the milestones they're passing.
In the spring, I thought getting pregnant was the goal. Then I learned it's just the next milestone on the path to a baby. It's an important one, but it's only necessary, not sufficient.
But thankfully, I'm pregnant from IVF #3. I think today would have been a lot harder if I weren't.
I'm doing ok with my anxiety levels, taking one day at a time with this pregnancy. We're not reading any of the pregnancy books, or googling to see what's developing this week. In fact, the only reason I'm counting weeks is to figure out my ultrasound dates. Thankfully my RE recommended ultrasound #2 be only 7-10 days after ultrasound #1. So that's next Tuesday. And I'm going to try to have another one a week later, which would be 8w5d. With pregnancy #1, we found out at the 9 week ultrasound that the embryo had stopped growing sometime around week 7, although they had no way to know for sure when it actually happened. So having a positive ultrasound right before Christmas would help us breathe easier while we're away for the holidays.
I'm not excited, really, about being pregnant. It feels so tenuous, so fleeting. I think that getting to Christmas will be a big enough milestone that maybe I'll be able to get more into it. Right now, it's definitely 'so far so good'.
Thank you for the lovely notes on my last post. It feels great to get those nice comments in my inbox.
Sunday, December 5, 2010
He was very quickly able to find the gestational sac and see a heartbeat when he put the ultrasound wand in, which was good, because after looking at my ovaries, everything had shifted a bit and he had a heck of a time getting a good view again. It probably took 10 minutes for him to get the scan right so he could see and measure the heartbeat. Was stressful even though we'd see it earlier, and it would have been agonizing if that's how things started.
The heartbeat on first measurement was 108 bpm, and on the second measurement was 110bpm. He likes to see 110-112bpm (although looking online, 108-110 seems just fine).
Measuring 6w1d +/- 2 days, and today is 6w3d. So in the range (although it always entertains me that they can consider something this tiny an accurate measurement -- honestly a pixel or two one way or the other really matters).
Our RE was more cautious sounding than he was in the spring when we had our first BFP. It was hard to read. I think it's because we lost our first pregnancy, so he'd rather be cautious but optimistic and have everything work out, than glowingly optimistic and have us face another loss.
He wants us to have another ultrasound in 7-10 days. I'll be calling my ob (my ob/gyn was my pre-IVF RE) to see if he can get us in early next week (Dec 13-15) -- if not we'll go back to my IVF doc for this next scan. (In the spring, he recommended the next ultrasound be 2-3 weeks after the 6w3d one, with my ob. So I'm sure he's recommending an earlier one to help us get through the anxious next few weeks.)
I'm stressed about doing the next ultrasound with my ob, because that's where we had the 9week ultrasound in May where we found out the embryo had stopped growing. But I'm glad we'll only be waiting a week or so to get some confirmation of what's going on in there.
So far so good...
Saturday, December 4, 2010
Yesterday's beta was 6,824 and progesterone was 32. So far so good -- next milestone is the 6w3d ultrasound tomorrow...
Definitely getting more symptoms -- bigger, tender breasts. Continuing to have vivid dreams every night.
A little anxious for tomorrow, but not overly so.
Saturday, November 27, 2010
Well, it turns out the lab *was* open (the phlebotomist mentioned it was very quiet yesterday... I can see why if everyone was told it was closed...) -- oh well. At any rate, we went in this morning around 10am for the blooddraw and I just got the call from my clinic.
My third beta is 1929 (slightly more than doubling every two days)! I'll get my progesterone number tomorrow -- curious what it is, since my first one was so high at 57. With IVF #1, it ranged between 20 and 35.
In other news I'm driving cross country with my dad this week (he needs to get his car back to California), which should keep me occupied waiting for the ultrasound next Sunday.
Hope everyone had a good Thanksgiving. I made another pie yesterday so we'd have leftovers to eat this weekend. We also very successfully converted leftover stuffing into savory bread pudding. Mmmm.
Tuesday, November 23, 2010
I'm doing ok with this 'one day a time' thing. But the first ultrasound is lurking in my mind, and I know I'll be anxious (although it's the second ultrasound that's going to be terrifying).
Early pregnancy means not a lot of symptoms. I'm sleepier -- by 8:30-9:00pm I'm winding down, and by 9:30 when I'm doing my shots I'm ready to go to sleep. However it's taking me FOREVER to go to sleep each night.
When I do get to sleep, I dream. No crazy vivid dreams (yet), but consistent dreaming every night. If we didn't have construction going on, I'd be snoozing in the mornings, so I wake up sleepy around the time my husband leaves for work.
My breasts aren't particularly sore -- much less so than last time. I have occasional uterine cramps/twinges, which happened last time too. And I'm thirsty a lot, like last time.
I didn't have morning sickness last time, and I wonder if I'll be as lucky this time. In some ways, I'd like to have it, just for the reassurance that things are developing normally.
All these barely-there symptoms make pregnancy a very abstract concept. Luckily the holidays will keep things busy, which should help the time pass.
I go in tomorrow afternoon for another Intralipid (had first one with egg retrieval). I'll have another one in 3-4 weeks, and then they'll check my immunology bloodwork at 11 weeks to see if I'm good or need to continue.
Friday, November 19, 2010
I'll do weekly beta/progesterone/CBCs for the next three weeks, and then just progesterone/CBCs. My first ultrasound is December 5th, still with my RE. If that one is good, then I'm handed off to my ob/gyn.
So far so good! And thank you for your lovely comments on my post from Wednesday.
Wednesday, November 17, 2010
Holy cow that means I'm pregnant.
It feels very different from the first time this happened. I mean, we're happy, obviously, but we're cautious. It's the best possible news based on where we are, but it's so scary. I keep reminding myself that a successful outcome starts like this, too. We told our immediate families, but also told them we don't plan on talking about it much until we get to the second trimester.
I don't even know when that is -- I'm not looking up dates like that. I'll wait for my clinic to give me my meds schedule -- it'll tell me when I stop progesterone and when I stop Lovenox, and all the dates that matter. I think when we have a successful ultrasound with my regular OB in 4-5 weeks, maybe then we can breathe...
One day at a time. So far so good.
You guys have been a great source of support for me -- thanks for being there and cheering me on.
I go back on Friday for beta #2, and I expect sometime next week I'll have another round of Intralipid.
Tuesday, November 16, 2010
I've been on Lovenox (blood thinner like heparin) since retrieval. It causes awful bruising. With good technique*, you can often avoid bad bruises, but it's not 100%.
Right now I have a 2 inch by 2 inch deep purple, tender, bruise on the right side of my tummy. And I find it horrifying, in a way that transcends logic. I mean, bruises are unpleasant in and of themselves, but my reaction to them definitely goes beyond. So I've been thinking about it a lot.
I think these bad bruises horrify me because they're a physical manifestation of everything I'm putting my body through. Most of what IVF involves is hidden: The shots, the monitoring appointments, the crazy side effects from all the hormones, the pills, the stress of waiting, the sadness of IF, the financial implications...
But bruises and scars (I have some from my laparoscopy in August '09) show, and remind me that I'm going through some pretty horrendous stuff in an effort to get the baby that we want so badly.
I just keep reminding myself that bruises and scars do fade, and that this too shall pass.
*Best technique I've found is to ice, then inject over 10-15 seconds, then leave the needle in for 10 seconds, then remove, gently press gauze for 10 seconds, then ice for about a minute. And if you do bruise, arnica gel is the only thing that will help the bruises fade faster (I get mine at Whole Foods).
Wednesday, November 10, 2010
One nice thing about IVF -- it's not a 2ww, it's a 10 day wait. One week to go!
(And no, I have no interest in peeing on a stick. It's too easy to psych yourself out one way or the other, and I managed just fine with IVF #1 -- I only POASed after getting the call from the clinic with the positive beta -- just to see what a positive result looked like!)
When I was pregnant in the spring (which still sounds surreal to me), I don't remember having any intuition about the results of my IVF before the beta. I remember twinges, low in my abdomen, but I don't remember if that was before or after beta. And I know every pregnancy is different. So I'm staying zen.
But oh, I want this so much.
Monday, November 8, 2010
We transferred two of our three embryos (our RE planned to transfer all three and I refused - not willing to have triplets. :)
Both embryos were Grade 2 (where Grade 1 is perfect, but the success rates are the same)- at 9:30am one was a 5-cell and one was converting into a morula, but by the time of transfer both were converting, which is great.
The third embryo was a 9-cell grade 3 embryo on its Day 2 (since it matured after retrieval it's one day behind). We'll let it grow to its Day 5 and if it makes it, freeze it.
Spent the afternoon on the couch yesterday, reading, and watching Gossip Girl. Slept well and now have two lazy days mostly at home (acupuncture this afternoon).
We've controlled all the variables we can -- now we just wait. First beta is November 17. :)
Saturday, November 6, 2010
I think of it as this way we get to choose the best two of three. I don't want twins, but would be ok with them, but I really wouldn't be ok with triplets.
Transfer is at 12:45 tomorrow (well, consult, then transfer).
Friday, November 5, 2010
This compares favorably with our first IVF, when we had 3 eggs retrieved: 1 was mature and fertilized normally, 1 was immature but matured and fertilized normally, and 1 never matured. We put two in and one implanted.
And it's better than IVF #2 when we had 3 follicles, but only got 2 immature eggs. 1 matured, but didn't divide. So we had nothing to transfer.
Since this time we have 2 fertilized eggs that started out mature, we're optimistic that we'll get to our Sunday transfer. And maybe we'll have an extra to decide what to do with.
Just Lovaza tonight -- progesterone (in ethyl oleate -- MUCH easier than in oil) gets added tomorrow night.
Staying positive over here!
Thursday, November 4, 2010
I don't find out until tomorrow morning how many were mature and how many fertilized, but yay for six! Six means we have a chance of making a Day 5 transfer instead of a Day 3 transfer.
Turned out he got 3 from the right ovary, which had four follicles, and 3 from the left ovary which we thought had two follicles. One more was hiding behind my endometrioma (blarg).
Anesthesiologist was great -- he put my IV in, which seems to work better than having the nurses do it. No nausea. Intralipid went pretty fast. Didn't pass out when the IV came out.
Now home, resting. About to take two more Tylenol preventatively. I start Lovenox again tonight, and start progesterone shots Saturday night. But all done with the morning shots. :)
Hopefully everything will go as smoothly over the next few days!
Wednesday, November 3, 2010
It's such a nice breather, before diving into the retrieval/transfer/2ww process. I'll start my Lovenox again tomorrow night, and then progesterone will likely start the night before transfer.
Still feeling good about things. I'm pleased I responded well to the estrogen priming/antagonist protocol, since it bodes well for future attempts (either IVF #4, or baby #2 if this one works. :)
We show up at the clinic at 8am tomorrow -- if last time is any indication, I'll probably be out of there between 1 and 2 (Intralipid takes about 2 hours).
Here we go!
Tuesday, November 2, 2010
Estradiol was up to 1137 (and is somewhat depressed by the Ganirelix), LH at 4.2, progesterone at 0.2.
I'm feeling optimistic today. Everything looks good, and we know it can work. My doctor even talked about the possibility of a Day 5 transfer, which he's never done before.
Sunday, October 31, 2010
Still tracking 5 follicles. Three in a row are 14.7, 13.5 and 13. Another one on that side is around 10. The other side has a 12. So still pretty close in size, which is good -- the 10 may not keep up, but it could potentially have an egg inside at this point, so we'll keep our fingers crossed. There may be another small one tucked in there, but couldn't tell for sure.
Lining is in good shape at 10.6.
Estradiol is 848, LH is 4.0 and progesterone is 0.2. I took my first Ganirelix this morning and will continue with stims through Monday night. Tuesday morning I go in for another appointment which will determine if I take stims in the morning, but the trigger shot will definitely be Tuesday night, for a Thursday retrieval.
Slept horribly last night. None of my medications are supposed to cause that (and only the Parlodel which treats the elevated prolactin is new to this cycle). So I'm thinking I'll use Tylenol PM tonight to make sure I get some rest.
Definitely feeling somewhat swollen in my abdomen. I can't imagine (and will never know) what it feels like when people have 25-30 follicles growing like this.
Really glad we continue to be on track, and no follicles have disappeared. Makes for a lot of similar blog posts, but I'll take that. :)
Friday, October 29, 2010
All five follies are still there, 3 are lined up in a neat row, measuring 11mm each. There's another one at 9mm on that side. On the other side, the one follicle is 10mm. So they're still tightly clustered sizewise, which gives us a good chance of growing them together.
Lining is up to 9.2. It's a little higher than usual for me at this point, but no complaints.
My bloodwork after the last monitoring appointment showed estradiol at 130, progesterone at 0.1, and LH at <1, but my prolactin was slightly elevated at 31. So now I'm on a pill -- half a pill is inserted vaginally at bedtime each night. Joy!
My TH1:TH2 came back normal as well! Despite this, and the normal NK levels, my doc is still recommending doing an Intralipid infusion with egg retrieval, and then again after a positive beta. He feels that the immune system naturally tries to go back to its "normal" level (in my case, normal = elevated) and he'd like to stay ahead of it instead of trying to play catch up.
My bloodwork today came back great. Estradiol is at 440-something, progesterone is 0.2, LH is 2-something.
Next monitoring appointment is Sunday morning. They want me to bring my Ganirelix, since there's some chance I'll take it that morning (and then Monday and Tuesday mornings). Not sure if they will have me do the hCG trigger the night of the last Ganirelix shot (since those are in the morning), or if it'll be the next day. But we're looking at a Thursday or Friday retrieval.
I'm happy things continue to look good. It's our first time on this protocol, but it does look like my body prefers it to the Lupron (and my emotions definitely prefer it to the Lupron).
Wednesday, October 27, 2010
My right ovary shows 4 follicles, all 7mm. My left ovary shows 1 follicle, also 7mm. There might be another one -- couldn't tell for sure. My doc now thinks that maybe there isn't an endometrioma -- that the corpus luteum that's resolving is showing up that way. But he'll aspirate that area at egg retrieval and see if there's blood inside or not. But he wasn't concerned.
So 5 follicles, all measuring 7mm, is quite good for me. Normally I have some that are ahead, and some that are smaller. Of course some could disappear by the next ultrasound, but so far so good.
And in other good news, my NK cell levels came back completely normal. I'll find tomorrow about my TH1:TH2 levels.
Lining, which is never a problem for me (I have to be good at *something*), is about 6.9mm -- normal for this point in the cycle.
I continue with all my meds and go back in on Friday morning. I'll take three days of Ganirelix, which could start Friday, but might start later, then trigger the next day, so the earliest retrieval would be Wednesday November 3.
Overall my meds have been easier to handle (although I had a meltdown last night, feeling stressed and 'in the weeds'). But it's really nice not being on Lupron -- previous cycles I'd end up crying every night before going to sleep. I'm feeling a little swollen, but otherwise no physical side effects.
Here's hoping all the follicles stick around and grow in unison for Friday!
Friday, October 22, 2010
Ultrasound yesterday was interesting -- the Ganirelix brought on AF so early in my luteal phase that we could see the corpus luteum of my last cycle's follicle still resolving itself (looked like honeycomb). Apparently I also have an endometrioma on that ovary, which I hadn't been told about (I think they noticed it during retrieval last time but forgot to tell me. :P)
I was told that as long as my bloodwork came back showing my progesterone was low, I'd be able to start stims today. I got the call in the mid afternoon with my numbers: estradiol at 193 (expected because of the estrogen priming) and progesterone at 0.2.
I had half of my immunology bloodwork done yesterday, and will go back in on Monday for the TH1:TH2 part (they should have had me in earlier this week to do it all at once but someone goofed.) And Wednesday I'll go in for ultrasound + bloodwork (estradiol, progesterone, LH). That should be an interesting appointment -- I'll have done 5 full days of stims with this new protocol, so it'll be the first time we see how I'm doing on it.
I'm also interested to see what side effects I have with just Gonal F + Menopur. I was on Lupron the other two times we did this, and I know that's what made me weepy every night (poor husband!)
So now we sit and wait (and inject ourself twice daily. :)
Wednesday, October 20, 2010
At any rate, I'm going in tomorrow for bloodwork and a Day 2 ultrasound and I'll get my cycle calendar.
I wish this would all be so easy...
Tuesday, October 19, 2010
Based on the cycle calendar my clinic had sent, it looked like I could expect AF on Thursday the 20th. However, when I talked with the nurse, I realized that wasn't based on anything other than a typical 28 day cycle. (I figured this out when I asked how the estrogen + Ganirelix makes my period start, and they said it didn't.... *sigh*) They know I have a long luteal phase -- in fact they asked me to call on Day 15 if I hadn't had an LH surge (ha!).
I ended up ovulating around October 15/16 (Day 21/22). So I can really expect AF around October 27. But then we start the Gonal-F + Menopur.
I'm hopeful that the estrogen priming will make a difference. I do think the Lupron (probably aided by the Menopur) oversuppressed me, so this should have a much better chance of giving me more eggs to work with.
Ganirelix, by the way, is pretty easy. The medication didn't sting, and there are few side effects. I do get head aches after taking it, but only the first day's was bad.
It's been a weird cycle. Being told "do NOT get pregnant" always feels topsy-turvy. And somehow the IVF cycle still feels far away, even though I'll be going in for a Day 2 ultrasound and bloodwork in the next 10 days.
I hate the turnaround time between [failed cycles | miscarriages | surgery recovery times | etc.] It would be easier if you could just do IVF cycle after IVF cycle without recovery cycles in between. Exhausting, but you'd learn so much faster what works. (I know there are lots of physical reasons why resting cycles are important, I'm just impatient. :)
So, no news, really, just tapping my fingers over here waiting to get things started.
Thursday, September 23, 2010
I also take my first shot of Humira on Monday, and the second one two weeks later. Which means I couldn't get a flu shot today since it takes about a week for it to work its way into your immune system. I'll do bloodwork around October 18 to see if the Humira worked as well as it did in the spring.
I had a dermatology appointment today for an unrelated issue, and also asked the doctor about the faded bruising I still have on my tummy from the heparin back in March/April. He said it's not bruising, it's damaged tissue. And it's not surprising given the amount of low level trauma to the area. It's likely to fade over time, but may not ever fade away completely. The tenderness, which I had assumed was part of the bruising, he thinks is also linked to the constant low level trauma.
Starting to feel like I'm slowing moving forward again, which is nice. All this waiting sucks.
Tuesday, September 14, 2010
I ovulated more than a week later than usual (normal is around Day 18 for me, and I ovulated around Day 27 or 28). Glad I kept up with the OPKs -- I was sure I'd just missed it.
For those wondering why I was using OPKs -- my doctor suggested it so we can better estimate the timing for our eventual IVF. After I get my period (likely mid-late next week given my short luteal phase), I'll get my calendar for my pre-IVF-cycle month. Which means OPKs again, and then starting estrogen 10 days after I ovulate, along with Ganirelix. Then after I get my period again, the actual IVF stim cycle starts.
If I have another extra long cycle next month, my IVF cycle month won't start until possibly early November, so I'm hoping it's more normal and we can start at the end of October. (*sigh* at one point I was thinking mid October, but seems unlikely now...)
My Humira hasn't started, since they want to time it with the beginning of my next cycle, and I'm actually looking forward to it since it gets rid of my allergies. (Silver lining, I suppose!)
One thing I didn't mention in my last post is that my doctor brought up donor eggs as the 'quick fix' answer to our infertility. So that's been floating around my head a lot. I really want to be pregnant (again), so I had previously told my husband in a casual conversation that I would rather be pregnant than use a gestational surrogate with my own eggs (not that that's a possibility, since my eggs are the problem, not my ability to carry a pregnancy).
It's definitely something that I'm open to, but I am having trouble reconciling myself to it. Which, after all, is why we're still trying to make IVF with my own eggs work. (And yes, the change in protocol is making me hopeful as so many of you pointed out in the comments on my last post.)
Hopefully we won't have to cross that bridge, and this IVF will be the one.
It's far enough away that IVF #3 is not something I constantly think about. I'm keeping myself busy -- travelled for a week and a half (partly with my husband), and am about to start a consulting project for a few weeks which should be fun and pays well.
On another note, it's incredibly hard to read pregnancy updates from people who got pregnant after I did and are now more than halfway through. I'm really happy for them (and you, if you're one of those lucky women), but it hurts, and it reminds me how close I'd be if my pregnancy hadn't ended the way it did. It's sort of like when you have a group of friends and everyone just grows apart as they get older and start having different life experiences. It's awkward, but it's not personal, it's just the way things are.
Thursday, August 19, 2010
Clearly ovarian reserve is an issue for us, since we've only gotten 2-3 eggs in our IVF cycles. I hadn't realized that the first cycle one of the eggs wasn't mature, but matured in time for ICSI and made a good embryo.
We know immunology is an issue, but we've been able to manage that successfully with Humira injections and Intralipid infusions.
So for this next cycle we'll switch to a different protocol. Both of my previous cycles were micro flare protocols: microdose of the antagonist Lupron, then adding FSH in the form of Gonal F (and Gonal F and Menopur in cycle #2). For IVF #3, we'll use estrogen priming towards the end of my next natural cycle (the one that starts mid-Sept) instead of doing birth control pills that cycle, along with Ganirelix to clear out whatever follicle emerges. After my period comes (mid October-ish), we'll start injectibles, and then add Ganirelix once the follicles get to 14-15mm to prevent a LH surge.
We're also going to go back to Humira to address my rising TH1/TH2 levels. We did Humira before IVF #1 and it worked great. For IVF #2, my levels were only slightly elevated, so we just did Intralipid, but my TH1/TH2 came back higher after the first Intralipid so I required another. To reset my immune system, I'll do two shots of Humira two weeks apart, probably starting next week.
And, bizarrely , since we'll need to know when my LH surge is, I get to use OPKs this cycle as a dry run for next cycle (since the estrogen starts 10 days after my LH surge). They want to be able to roughly predict the timing for retrieval/transfer. I haven't used OPKs for more than a year!
I'm really glad we're changing protocols. The reading I've been done about low ovarian reserve suggests that the estrogen priming can be really helpful. So hopefully I'll respond well!
I'm also really happy we were able to move this consult up (originally the clinic tried to schedule it for September 2). Since I need to be doing things this cycle, and my doctor wants the Humira done before the estrogen priming starts, waiting for the consult would have pushed things further back than October.
Monday, August 16, 2010
Photo by Michael Gwyther-Jones
My period started yesterday. Early - 9 days post retrieval - but I think the one day of progesterone helped moved it along (we did the shot on Sunday night to prep for the Tuesday transfer-that-never-happened).
So I emailed the nurses at my clinic and asked if I should schedule a baseline ultrasound. And they relayed from the doctor that I had to have a natural cycle first. Would have been nice to know that as soon as the cycle failed. I mean, really... I know this was my second IVF cycle, but since the first one worked, I don't know how the clinic handles a failed cycle.
So we wait. My normal cycles are 32-33 days (long follicular phase, short luteal phase), so it'll be mid-September. The timing works out reasonably well, because I'm going to be traveling the week before and after Labor Day. And our follow-up consult is this Thursday, so we'll have a better ideal of what we'll tweak. But it means that the next IVF will be mid-late October, which seems so far away. *sigh*
Last night was the first time I've let myself think about the fact that we would have been more than halfway through our pregnancy if it had been viable. Tomorrow would have been 24 weeks. And I see so many of my blog and twitter friends celebrating 18 and 20 weeks, and I can't help resenting the unfairness of it all. I'm happy for them, and so glad they didn't have to go through what we've gone through. But it sucks for us. Thinking about when I was pregnant feels like looking through fog -- it's hazy and seems far away. And thinking about being pregnant again feels like a mirage; something that keeps moving away as we try to reach it.
Tuesday, August 10, 2010
And then midday when I was driving my in-laws around, I got another call in the car. Which I didn't answer, because I knew it was bad news, and I didn't want to hear it with them in the car with me.
So they went into a store, and I listened to my voicemail. It was my doctor telling me that our one embryo hadn't divided, and so the transfer was cancelled.
We'll do a consult with him soon about the next cycle, but are pretty bummed this one is a bust. Money and two months of effort down the drain. I think the timing for the next one will be early October, based on waiting for AF, three weeks of birth control pills, and then stims again. But we'll see.
Sunday, August 8, 2010
I still start progesterone shots tonight (wasn't sure if the day delay meant those would get delayed, but apparently it's based on retrieval, not transfer, timing).
Saturday, August 7, 2010
We did get a call from the doctor (never a good sign) around 2pm. Both eggs were immature. One matured overnight and was ICSIed late this morning. So we'll find out tomorrow before noon if it has fertilized. If it survives, we're on for a Tuesday transfer. (Those of you following carefully along will realize this means we can go to the Natalie Merchant concert on Monday -- minor silver lining, but I'm taking there where I can get them...)
The other egg did not mature and had started to degenerate.
So... more waiting until tomorrow morning to find out if we have anything to work with. We're glum but not overwhelmed by it.
Based on some reading about protocols, I'm wondering if the Menopur hurt rather than helped. It doesn't seem like my little follicles grew very much from Tuesday (when they were 7-9mm), and they barely grew from Sunday to Tuesday (when they were 6-8mm). The one big empty follicle prompted the retrieval scheduling (of course hindsight is easy...). This retrieval was Day 16 --my first IVF it was Day 14.
If this one doesn't work it'll be interesting to see what my doctor suggests for the next one.
Staying kinda detached until we hear the news tomorrow. Just trying to pass the time.
I appreciate the positive notes, here and on twitter. Thank you all!
Friday, August 6, 2010
Egg retrieval was this morning. I asked for the IV to be put in my arm, not my hand, but they insisted ("the anesthesiologist prefers it there") and the new nurse had trouble getting it in, which was incredibly painful, and then blew the vein.
So that IV came out, and they decided to let the anesthesiologist decide where to put the next one. She was awesome, and used a spot on my forearm that I was initially squeamish about, but actually worked really well. Different anesthesiologist from last time -- I really liked this woman. Listened to my description of how nauseous I was after the last egg retrieval and made sure to add stuff to my mix to help avoid it. I continue to think the anesthesiologist is usually the most important person to have a good rapport with for medical procedures...
Procedure itself was easy. I was just on relaxing meds and an anti-nausea med initially, while the doctor did an ultrasound to check the follicles, but then they knocked me out for the retrieval.
Woke up with no nausea - yay!
Ate a few snacks, had some water and juice, and then they started the Intralipid. I was relieved, because I had had the impression there would be a longer break. And, drum roll please, I even sat up for the whole Intralipid! (This is a big deal because I have vasovagal episodes and pass out easily when needles/IVs are involved. So my previous Intralipids I've stayed horizonal the whole time.) I did go horizontal when they took the IV out, tho. Better safe than sorry.
We were perturbed that the doctor didn't come in to tell us how the retrieval went. Last time he showed up about 30-45 minutes into my recovery period and told us what happened. This time I recovered (30 minutes), had the Intralipid (1 1/2 hours), and he still hadn't showed up.
When the Intralipid finished, they unhooked the tube from the IV but left the IV in me. I guess their standard procedure is to have the patient get dressed first, but a) there's no reason to leave it in once the Intralipid is done, and b) last time we did that I passed out. So they took out the IV, and then I got dressed.
Waited another 5-10 minutes and the doctor finally showed. Turns out the big follicle from my last update (was 15mm at my Tuesday ultrasound) had nothing in it, nor did the other follicle on that side. The other side, which had been dormant last IVF cycle, had 2 follicles and he got 2 eggs.
I don't know for sure, but I think one of them is likely to be mature and one of them may not be, because he talked about how they'll do ICSI tonight if they're mature, and if one isn't mature, they'll do ICSI on that one in the morning. And that being a day behind isn't a big deal, even with a Day 3 transfer.
So, assuming we have embryos to work with (still a big assumption), we'll do a Day 3 transfer.
Right now, I'm not feeling very optimistic. With no egg in the big follicle, it means the two eggs came from follicles that were 7-9mm on Tuesday, so they had to have been still pretty small today (certainly <18mm).
If we can transfer one or two embryos on Monday, I think I'll be able to be optimistic again, since it did work the first time around. But right now I wouldn't be surprised if we don't get anything out of this cycle.
After the miscarriage on IVF #1, my thinking is definitely adjusted. No embryos, or a BFN at least means we can move on to the next cycle immediately. A BFP would be awesome, but I'll be scared to death for 3 months, and if something goes wrong again, it slows us down so much. (This IVF cycle is almost exactly 5 months after our first.)
Rationally, we talk about it taking 1-5 IVF cycles to get our baby. But emotionally that's so much harder to accept.
Fingers crossed for fertilized eggs! I'll get a call before noon on Saturday from the clinic with an update.
Tuesday, August 3, 2010
The bad news is that one follicle leapt ahead and is measuring 15mm. The good news is that there are 4-5 follicles between 7mm and 9mm that could cross 10mm (minimum to be potentially mature) by the time we do the retrieval on Friday.
My lining is great at 10mm. Estradiol is up to 496.
My TH1 came back elevated, and my NK cell levels are just slightly above the acceptable range, so I'll do another Intralipid with my retrieval on Friday.
And in the small-things-that-don't-matter-in-the-big-picture, I'm annoyed that the retrieval will be Friday, because we'll almost assuredly do a Day 3 transfer, which means missing Natalie Merchant on Monday night. Poop.
I'm trying to remind myself that things didn't look much better last time, and we still managed to get 2 mature eggs, fertilize both, and get pregnant.
But it's hard. We upped the meds this cycle, and it's so frustrating to not see any improvement.
Sunday, August 1, 2010
Another ultrasound this morning...
We're making progress -- 5 follicles (don't know where the 6th went), between 7-11mm. My lining is up to 8.0mm, which is now in 'ok' range. It'll be plenty thick by the time we do the retrieval, tho...
Estradiol is up to 244. This is a relief because my estradiol on Day 8 was 59, which made me really anxious. So it's climbing as my follicles (slowly) grow.
I go back in on Tuesday for another ultrasound, and my doc thinks we'll probably trigger Wednesday night for a Friday retrieval, but could go another day. This will be two days longer than last time, when we retrieved on day 14. Frustrating, since this was a higher dosage cycle, and was supposed to push my ovaries harder. I guess they're not playing along.
Although in good news, I have follicles on both sides, which didn't happen last time.
I've been spotting continuously since my post-BCP period last week, but that should stop as my estradiol levels climb. I hope it stops soon. It didn't phase my doctor, but it causes anxiety for me -- too many bad associations with bleeding post-D&C.
Tonight was another injection fail (I think I only tweeted about the first one...) I prepped my shots, did the Menopur, did the Follistim, then realized I hadn't mixed the saline and the Menopur. So I had injected myself with just saline, and had to give myself an extra shot tonight. Doh! I blame it on the hormones... :)
So, just slogging through this. No amazing news, but steady, albeit slow, progress.
Thursday, July 29, 2010
My doc found 3 follicles on each side, which is good news because last time one ovary took a break. They vary from 5-8mm, which means they're close enough to all potentially mature at the same time. They were smaller than I expected, but I don't know why I had expectations -- last time we stimmed until day 12, and retrieved on day 14, so there's still a lot of stims to go. Lining is decent for day 8 at 5.8mm. And it's possible that there's another follicle on one side because my bowel was in the way digesting breakfast.
Next monitoring appointment is Sunday. Because my local pharmacy isn't open on Sunday, I had to get more Menopur today (current batch runs out Sunday morning). I also need another Gonal F pen. But the nurse who walked me through the updated stim schedule found 900 iu of Follistim for me, saving me $800. Yay nurse! She also found a menopur vial, saving me $70. I only filled half the Menopur prescription (for 4 vials), since Sunday I'll know better how long I'll be stimming for.
Retrieval will probably be Wednesday or Thursday of next week. Which would mean transfer would be Saturday or Sunday if Day 3, or Monday/Tuesday/Wednesday if Day 5 and/or we do genetic screening.
*Ideally* transfer won't be Monday, August 9, because we have Natalie Merchant tickets and I'll be on bedrest the day of the transfer. :)
I'm a little disappointed in the number of follicles. Yes, it's more than we had last time (4 that we were tracking on ultrasounds), but we upped my medications this time, and we saw 7-9 antral follicles in my baseline ultrasound. So it's likely this is as good as it'll get. I'm hoping that all the follicles grow together so that we have a chance of getting eggs out of each one.
So I'll keep slogging through the injections and hope Sunday things look bigger and better!
Monday, July 26, 2010
I'm on day six of Lupron, and had my first crying jag last night. I'm on day four of Menopur and Gonal F, and the Menopur is screwing with my ability to sleep. Ugh.
It wasn't this bad last time, so I'm thinking the Menopur is probably making things worse. After all, that was the point in adding it -- more stims to hopefully make more eggs.
It's really a pity that being self aware of the extra hormones doesn't help me avoid the moodiness, snippiness (my poor husband) and extra sensitivity.
I had acupuncture today, and she worked on all of this stuff for me. The points she used were super sensitive, which is pretty rare for me in acupuncture now. I had hoped I could nap during the session (rare for me, but with poor sleep last night I thought maybe it would happen). but alas 'twas not to be. I'm also taking evening primrose oil (did last IVF cycle too) which helped with the overheating while sleeping and helped grow my lining. She gave me some herbs (tablet form, for once) to help manage the hormones too -- they should also help with my lining.
I can feel things working -- curling up to sleep is less comfortable as my ovaries are swelling, hopefully with lots of follicles!
Shots themselves are fine. Lupron in the thigh rocks. Gonal F is easy, and I've resigned myself to icing before Menopur since it has a strong sting. The others I just use alcohol wipes with benzocaine.
Two more days of stims, then ultrasound at 8:30 on Thursday morning.
Friday, July 23, 2010
Estradiol came back <5, which is great -- means no activity and a clean slate to grow good follicles.
I have been doing my Lupron injections in my thigh, which I'm (weird word, I know) loving. Most have been painless, and even when it pricks a bit, it's less intimate than my tummy, so less of a big deal. Apparently it varies a lot woman to woman, so I'm happy it's working for me.
This morning I started the Gonal F and the Menopur, and decided to do one on each side of my tummy. That way when I pinch to get some flesh, I don't make the previous injection spot bleed. (The things you learn after hundreds of shots...) And with the Lupron in my thigh I don't have to worry about that one.
Had an Intralipid infusion today. It went fast -- about an hour and a half. I usually listen to a podcast and play solitaire on my iPod nano. I'd use my phone except that I lay flat for my infusions so I don't pass out (vaso-vagal) and dropping it on my face hurts (yeah...) So I'm limited to the mediocre games on the nano, but it works to pass the time. I also entertain myself by watching my blood pressure rise as the infusion goes in. I start around 99/60 and got up to about 108/63 by the end. Hee!
Found out today that the backup semen sample from last time is still frozen, so I won't need to shuttle another backup when I go in next week. We're re-running my immunology blood work on Wednesday, and I have an ultrasound on Thursday morning to see what's happening in my ovaries (hopefully *both* my ovaries this time!)
And I have my fingers crossed for Holly over at Ready To Be a Mom who's in her two week wait for a FET!
Tuesday, July 20, 2010
I went to acupuncture yesterday for the first time since the D&C in early May, although I've been trading regular emails with my acupuncturist.
Had my baseline ultrasound this morning to confirm my ovaries are clear before starting meds tomorrow. Everything looked good (we even saw my right ovary, which hid last cycle and didn't grow any follicles -- hopefully seeing it means it'll participate this time around!)
My doctor didn't count antrals, but my educated guess based on today and the ultrasound pre-birth control pills is 4-6 on one side and 3-4 on the other. Which I'm happy about, and would be ecstatic if they all produced eggs.
Last time we did a microdose of Lupron (20 units twice a day) and then added 225 units of Gonal F twice a day. This time, we're also adding one vial of Menopur (which I've used before on IUI cycles) when I start the Gonal F. So, *gulp*, six shots a day during the stim period. Good thing it's not my first cycle -- it sounds overwhelming even knowing I can handle it.
I may try the Lupron injections in my thigh -- I've only ever done tummy shots (and my husband did the progesterone shots in my butt last time around), but I'm still bruised from the Heparin after two months recovery time, and I'd love to avoid poking my tummy for a few more days.
As long as my estradiol levels come back normal today (which based on the ultrasound, they should), I start my Lupron tomorrow, and add the Gonal F and Menopur on Friday. I'm going in on Friday for an Intralipid infusion to calm down my NK cell levels (slightly elevated at what my doctor considers a 2/5 level; but my TH1/TH2 levels are normal -- yay!). We redo the immunology bloodwork next week to determine if I need another infusion at the time of my retrieval.
The next ultrasound will be next Thursday (July 29), so we'll see how everything responds to the meds this time around.
I'm glad to be starting meds tomorrow -- I feel distant from the process right now, and it's still incredibly surreal that I was pregnant a few months ago. Like I dreamed about it instead of it really happening.
We know that realistically it's likely to take 1-5 more IVF cycles for this to work, but I can't help hoping this one will do it. If we get enough embryos, we'll probably do preimplantation genetic screening to avoid another chromosonal loss. It's pricey, but if it means we put in two good embryos instead one 0-1 good embryos, it's worth it. Particularly since we now know based on IVF #1 that I can get pregnant.
Thursday, June 24, 2010
My period started today. I am elated.
It's been a weird seven weeks since my missed miscarriage (I forget which blogger used the term, but it's the one I like best at the moment).
Everything I usually hope for has been inverted. Instead of wanting my beta numbers to rise, I wanted them to drop. Instead of wanting to see 'Pregnant' on a home pregnancy test, I wanted to see 'Not Pregnant'. Instead of hoping my period wouldn't come, I couldn't wait for it to appear. It's like when Alice goes through the looking glass. Topsy-turvy.
I didn't expect my period to come until early July. My 'normal' unmedicated cycles are 32-33 days. The last beta I had was June 1 (came back at 13, down from 22 on May 28, and my bleeding stopped around June 3. So I was thinking July 3-6, which would end up meaning IVF #2 was targeted for the second week of August.
Hence my elation!
I'm scheduling a baseline ultrasound for tomorrow, and hopefully that will look good. Then I go on birth control pills for at least 21 days, during which time I'll have a saline hysterosonogram to make sure my uterus is looking good post D&C. (I'm also thinking I'll have my first mammogram during those 3 weeks as I just turned 35 and my mom had breast cancer early. I figure it will be less painful before the hormone swelling starts.)
My immunology bloodwork is being redone next week, and we're also re-testing my prolactin and thyroid levels (normal about 18 months ago, but not retested since). The immunology results will reveal whether or not my NK cell and TH1/TH2 levels have remained low, or if I'll need Humira again (unlikely) or an Intralipid infusion (more likely) to suppress them.
If everything looks good, I could potentially be doing a retrieval at the very end of July/very beginning of August!
p.s. I think my vacation last week helped my body recover. I was at Rancho La Puerta in Mexico, and it was amazing. Summer camp for adults. Highly recommended! I came back feeling healthy, relaxed, and long (all those stretching classes).
p.p.s. Thank you for all the kind notes about my last post. Much appreciated!
Sunday, June 6, 2010
The Thursday night before Memorial day weekend, I dreamed about my little girl. She was maybe two years old, dark, short hair with curls, and very poised. I woke up happy. I also woke up bleeding.
Initially I wasn't too concerned -- I'd been bleeding on and off since the D&C on May 5, although I hadn't seen fresh red blood for a week or two. I went to my morning class at The Bar Method and after class I realized I'd bled quite a bit more (like the first day of my period). I cried all the way home.
Some research online suggested that the D&C didn't get all the tissue, and this was my body getting rid of whatever was left. I peed on a stick, and sure enough, it still showed positive. Called my doctor, ended up talking to his nurse, and the doctor on duty called in a test requisition for my hCG levels to be taken.
It was not a good day. The reason I did the D&C immediately after finding out our pregnancy wasn't viable was to get past the physical process and begin healing and get on track for IVF #2 as quickly as possible. Immediate D&C meant no sedation, and if you want, you can read my earlier post for what a nightmare that was. And until my bleeding stopped, my body couldn't start a new cycle. Which meant instead of a mid-June period, I was now looking at an early July period. I was really angry and frustrated (and a little scared -- unexpected fresh blood is never a good thing).
The blood draw that afternoon was surprisingly good - the last time I was in that lab was for my weekly progesterone/CBC levels. I got the awesome tech who manages to make the needle not hurt at all. And, curiously, when I was waiting to be called, there was a butterfly flying around the (basement level) room. Maybe the universe sending me a sign.
By Friday night I was calmer, and it was so nice to have my husband home from work. After dinner we talked about it, and he said my dream was our little girl saying goodbye. (A week later, this still makes me tear up.) We're not religious in the slightest, but I think he was right. My body realized it was letting go of the last little bit of her, and gave me that dream.
We went to Napa on Saturday as planned (not quite the weekend we'd planned, though, what with the bleeding and all...
Wednesday I found out that my hCG was 22 on Friday, and had dropped to 13 on Tuesday. The bleeding has stopped, and I'm finally no longer having to use a panty liner. So I think my body will start having a regular cycle. My "normal" cycles are 32-33 days, so that would make it early July before I get my period. I'm back to feeling like I did before the bleeding restarted -- just eager for time to pass so we can start up again.
We have a consult with our IVF doctor to Tuesday to discuss the next cycle, and I'm hoping he doesn't feel any need for a delay past waiting for my cycle.
-Brave IVF Girl
p.s. For the record, I don't have a test that says she was a girl, but I'm pretty sure she was. When I dreamed about her while pregnant, she was a girl, and in her goodbye dream, she was a girl.
Tuesday, May 18, 2010
Emotionally I'm doing well 98% of the time. Physically, the bleeding has almost stopped. We have our consult with the IVF doctor on June 8. We know it may take more than 1 IVF to get pregnant again. And we don't even know when the IVF cycle could start. But we can't wait to get going.
On the silver lining list, I'm doing a month at The Bar Method to get back into shape (I gained about 5 pounds between IVF meds and early pregnancy, but need some toning), and the month of no Heparin shots means the bruising is fading on my tummy. We're going to Napa for my birthday weekend (Memorial Day weekend), which we've done for the past few years, and we're looking forward to some great meals. (Unlike most people, we go to Napa for food, not wine, although we definitely enjoy wine too. I can't drink until November, though, because I'm on isoniazid.)
By the way, my friend Jamie (@wombwarrior) shared this great post from the American Fertility Association about infertility and pregnancy loss. Excellent read, and there will be a part 2.
Updated: Here's part 2 of that article about infertility and pregnancy loss.
Friday, May 7, 2010
This one was different. My doctor (not the IVF doctor, but my awesome pre-IVF fertility doctor and ob) found that the embryo stopped growing 2-3 weeks ago. I thought my doctor was teasing me when he was looking at the ultrasound and not saying much of anything other than that he was trying to find it. Everything had been perfect less than 3 weeks before. My husband was devastated. After the good ultrasound at 6 weeks 3 days, he had put his fears behind him and really embraced the pregnancy and the expected baby. I had been carrying a lot of anxiety, even past the good ultrasound, but as this appointment got closer and closer I had gotten more excited, and less nervous. We had even talked about telling our family this Sunday at Mother's Day brunch, even though it was two weeks earlier than we had planned.
My doctor thinks it's probably a chromosonal abnormality, and the tissue has been sent off to a lab to be analyzed. About 80% of the time they can grow cells and find out if they're normal or not. Hopefully, it is a chromosonal issue, and there's nothing about my body or immune system that contributed. Since I never spotted or had any signs of a problem, it's likely that my body was doing everything it needed to. I have trouble calling it a miscarriage, because I didn't actually miscarry. It stopped growing.
I had a D&C to remove it on Wednesday morning. I took two misoprostol three hours before the 8:30 am appointment, got shots (in my butt) of Valium (holy fucking cow that one hurt), morphine and something else before the procedure, got two shots in my cervix (conceptual ow but not as bad as the valium shot), and then he did the D&C. Unfortunately, after he thought he was done, he did an ultrasound to check, and had to go back to get a little bit more. That last bit was the worst thing I've ever been through physically. Somewhere in there I fainted, but I'm not sure exactly when. After about 20 minutes of resting/recovery I was reasonably ok. Got a shot of RhIG because I'm Rh negative, and we were on our way.
I was prescribed methergine which helps the uterus contract (typically given after delivery). I had and have only very minor bleeding. Cramping was medium the day of the D&C, and I ended up taking a vicodin that night which may or may not have helped me get a good night's sleep. It was better yesterday and today. None of it has been worse than a bad period. TMI warning: annoyingly, I'm still constipated from the progesterone I had been taking, and that crampiness mixed in is very unpleasant.
We're sad, and drained, and weary, and impatient to be able to start another IVF cycle. The D&C was truly awful. My doctor had asked on Tuesday if I wanted to be put under for it, and I'm so bad with IVs that I asked about other options. I wish I'd decided to be put under, but then again, it might not have been able to happen so quickly. And I'm very very glad it's behind me. My body can start healing and my mind and heart can process and heal as well. We have a consult scheduled with our IVF doctor on June 8, and the results of the lab analysis should be back by then. My doctor said I can expect my next natural cycle in about 6 weeks, so the timing will work out about right to be able to start again in late June/early July.
So the title of this post...
I used this analogy yesterday with my husband, and it really resonated for us. After two and a half years of trying to get pregnant, having our first IVF cycle work was amazing. We could see the light at the end of the tunnel, and we were so, so excited to think about having a baby this year, right before Christmas.
It turns out it wasn't the light at the end of the tunnel. It was a lantern.
It's marking some progress (we successfully managed my immune system; we were able to get pregnant; and my body handled the pregnancy beautifully, to the best of our knowledge) and it helps us see the way forward, but it's not where we thought we were, and that's horribly disappointing.
I so appreciate everyone's kind notes. I wish that so many of you hadn't been through this or something similar, and I wish for those of you who haven't that you don't ever have to go through it.
Sunday, April 11, 2010
I knew I was lactose intolerant, but love bread, love to bake, and eat a ton of carbs. Oh, and I have a huge sweet-tooth.
And did I mention these three weeks fell between Thanksgiving and Christmas?
Nonetheless, I did it. I got to know the raw foods aisle at my local Whole Foods (which, by the way, I haven't visited since) -- specifically for 'no sugar' options that helped manage my cravings for something sweet.
I didn't notice feeling any different during the three weeks on the restrictive diet, but afterwards she suggested I add the foods back in one at a time. And what do you know, when I ate wheat, I felt crappy and my stomach acted up. (Which for me usually meant cramps and an urgent bathroom trip -- gluten intolerance manifests differently for different people.)
So I jumped into a gluten free lifestyle. At first, it was hard, because we hadn't found good substitutes for the wheat products that we knew and loved. I went through our kitchen and pantry and threw out or donated everything that I couldn't eat. Which is a lot. Most people don't realize how much food contains wheat-based or gluten-containing products. Soy sauce, and any products containing soy sauce are out. (You have to use wheat-free tamari, and just to make it more fun, not all tamari is wheat-free.) Wheat, barley, rye, all out. Oats -- questionable, because they don't contain gluten themselves, but are often cross-contaminated in processing. Now I buy certified gluten-free oats from Bob's Red Mill. Pasta, couscous, bulgar -- all creative ways of using wheat.
I started trying gluten free products at Whole Foods and doing research online to identify quality brands. I also found local gluten-free restaurants and bakeries. Living in the San Francisco Bay Area, I get to benefit from a pretty high density of alternative bakeries and restaurants, which helps, although I'd love to be able to eat Chinese food other than P.F. Changs. (Don't get me wrong, I love the fact that they have a gluten free menu, and it's not bad, but it's also no where near the quality of the Chinese food that I used to be able to eat.)
I also started investigating gluten-free baking, and lucked out with my first cookbook purchase: Annalise Robert's Gluten-Free Baking Classics
I ordered my special flours through Authentic Foods and noticed that they sell gluten-free pasta. And not the rice-based pasta that Whole Foods carries that is slippery and has no taste. Corn pasta that looks and tastes like regular pasta! I order it in bulk, and recommend it to everyone I find out is gluten free.
(You can also order it from Amazon in a wider selection of pasta shapes/sizes: Le Veneziane Italian Gluten Free Corn Pasta)
Also in the bread area, I have to recommend Udi's which is available in many Whole Foods and can be ordered online. Their white sandwich bread is the best facsimile of regular wheat bread that I've found, and their blueberry muffins are awesome. Very high quality products.
The Whole Foods Gluten Free Bakehouse products are pretty good. I like the hamburger buns, although they're considerably more dense than a wheat-based bun. More like a biscuit or a scone, but the flavor is good. The Prairie Bread is good toasted.
There are some fabulous gluten free bloggers out there, who post some really amazing recipes. My favorites are Gluten-Free Girl and the Chef, Tartelette, and Cannelle et Vanille. Note that the last two haven't always been gluten-free, so some of their older posts may use regular flour.
I want to add a note about the difference between gluten intolerance and celiac. Celiac is an auto-immune disease where eating gluten causes the body to attack itself. People with celiac need to avoid all gluten, and frequently rely on gluten-free certification to make sure the levels are below a certain maximum. People with gluten intolerance have a wide variety of symptoms, and are always gluten intolerant to varying degrees. However, just because you don't manifest symptoms doesn't mean it makes your body happy! When I started going gluten free, I still occasionally indulged in a croissant from my favorite patisserie. But then when it became clear that my infertility was linked to an overactive immune system, I really went as completely gluten free as I could.
It helps that my husband and I mostly eat at home, because restaurant food can be challenging. That said, there are lots of options. I find Thai food is easy, because dishes tend to use fish sauce instead of soy sauce (always good to ask, tho). sushi is also easy, particularly if you bring your own wheat-free tamari -- you'll have to avoid anything fried (tempura/karaage). Pizza is getting a lot easier -- many pizza places are now offering gluten-free crusts (for a premium, naturally), and there are some good pre-made crusts for making pizza at home. The best I've found is Rustic Crust Gluten-Free Napoli Herb -- the website has a store locator and you can also order online. Mexican is easy -- just make sure to ask if the tortillas are flour or corn -- usually burritos are made with flour tortillas. In & Out is the best fast food choice: if you ask for your burger protein-style it comes wrapped in lettuce instead of a bun. And, if you're very sensitive to gluten or have celiac, their french fries are fried in oil that doesn't fry anything else (which isn't true at most other fast food places).
High end restaurants are more and more educated about gluten intolerance (again, I benefit in part from living in the Bay Area). When you make your reservation, let them know that you're gluten intolerant, and ask if they can accomodate. And at a restaurant, let your server know and ask them to confirm with the chef if there's any question as to the ingredients for a dish. (Sauces and soups are particularly challenging, as flour is often used as a thickener.)
The first 3-4 months of going gluten free are challenging, because you have to rethink all your patterns around food. But if you do in fact have an intolerance, it's so worth the effort. It turns out I don't have a sensitive stomach -- it's just sensitive to gluten! Traveling is so much easier and less stressful, and I know my body is happier.
Please leave any specific questions about gluten intolerance in the comments and I'll do my best to address them!