Posts tagged IVF

In the past six months we’ve moved from full coverage for IVF to partial coverage (blood work and u/s only) to no coverage. I switched jobs, and lost the full coverage that I had. DH’s insurance plan would cover the u/s and blood work, and any tests that we needed (about $5,000 of a cycle’s total cost). But, he just informed me that they’re changing carriers starting January 1. Of course, our clinic doesn’t accept this new carrier. We will pay full cost of IVF if we stick with this clinic, and the current plan.

My head is exploding. This is such bullshit.

Somehow, it’s been four months since we started our first IVF cycle. (Can you believe that?) In this time I’ve grieved, and hurt, and cried, and grieved some more. I’ve also, somehow, found my way back to my life and myself. Honestly, I’m more me than I thought would ever be possible a few months ago. I have managed to emerge from the despair, depression, and agony of IVF and early loss.

I’ve also been living with some remnants of that experience, and I want to share them with people. To me, IVF is very serious - it’s a big deal. It’s not something I take lightly, and it’s something that’s changed me forever. I know a lot of you readers are on the same path, and I’m not at all discouraging you from IVF. But, as always, I want to speak honestly and openly about my experience. Here goes…

1. My body isn’t quite the same. IVF is incredibly hard on your body - and I had a relatively drug-lite cycle, with few terrible side effects. I feel like I was pretty lucky, and didn’t have too much weight gain during/after the cycle. I’m mostly just out of shape since I’m still not back to what was my regular exercise routine (though that was longer and longer ago…) My belly still doesn’t look right, though. It’s weirdly puffy in the abdominal area. I’ve always had a bit of a belly, but this pouch won’t submit to sit ups or yoga. It’s out there, and will not budge. Of course it’s annoying in that I feel like it should be a pregnant belly, but it’s just weirdly fat. My boobs seem a bit saggier, too. I might be paranoid about this, but I’m pretty sure they’re slightly less perky than before. And, I’m back in bra-purgatory - nothing fits at all. Ugh. The biggest complaint, though, is my skin. After going off the Pill, I started having more breakouts. (Again, I was lucky in life and have rarely had any until this past year.) But, now, it’s a constant problem. I have had break outs all around my mouth and nose for months, and they won’t go away. I’ve read that these types of break outs tend to be hormone related - great. They’re also not regular “zits” - it’s like weird patches of painful breakout. GROSS. I’m finally trying to find a dermatologist to help me. It’s quite embarrassing and uncomfortable. A reminder that I certainly don’t need.
2. Pain. Since IVF had more abdominal pain than ever before in my life. After our last cycle I had what looked like an endometrioma and was pre-diagnosed with endometriosis. My RE strongly recommends a lap to diagnose, and hopefully remedy, the endo. I really cannot believe how constant this pain is. I’d say it’s typically about a 4 on a scale of 1-10. It’s usually at a level I would call “discomfort,” and most days I don’t take anything at all for it. Though, my periods are certainly more painful than that… ouch. I just can’t believe I actually have pain nearly all of the time. Those high doses of hormones definitely had an impact on my body.
3. I miss my embryos. I do. I started out with 11 embies, and now they’re all gone. So much potential, and none of it fully realized. It’s perfectly overwhelming to think that each of the could have been one of our children. I mean, seriously, how does that not knock you the fuck out? I miss tater-tot, too. (TT is the nick name we used for our very brief pregnancy.) It’s amazing to me how much I miss that little guy. And, how much I cherish the memory of that weekend before we knew for sure that the beta wouldn’t rise and I would start to bleed. Gd, I had no idea it would feel like this - that there would be such a sense of loss after such a brief moment. I will never forget the exact moment I felt my first implantation cramps. I knew what it was, even if I was too scared to say it out loud. I knew that little embryo was growing inside of me. I still wish so badly that he was here with me today.
4. I need a long time to recover. I’m not a girl who can do an IVF every other month… Originally I had thought I would be able to do one in January, March, and May. Well, my body had other plans, and we were canceled twice before we even got started. It’s kind of misleading that the REs approach it from a purely medical perspective - cycle month, rest month, cycle month. I think for most women, that is not emotionally or physically realistic. (Not to mention financially!) Then, after the chemical pregnancy/loss, and the pre-diagnosis of endometriosis and the giant ovarian cyst, I knew that multiple cycles in a short time span was simply not feasible. I was far far too fragile. Only very recently am I feeling strong enough to consider another IVF, and acknowledge that out loud. As you’ve probably read, three months ago, I was fairly certain I would never go back there.
5. I’m scared of what’s next. As desperate as I am for a plan and a path and a solution, I know that we just don’t have one right now. The thought of IVF terrifies me. The thought of adoption terrifies me. I have no idea how we’ll decide what to do next… our journey is still so open, and every option seems too hard at times. I wish that I could feel more confident about IVF now that I’ve done it once, but I’m not. It was hellish. Yes, I survived. Yes, I know I can do it again. But, it is hard and I am scared.

Please let me know what your post-IVF experience was like - leave a comment!

If you read my last post, you could probably tell that I am tired. Like, with a capital T. Like, exhausted. Turns out DH is, too. And, while we got the green light to do another IVF this month, we’ve decided not to do another cycle right now.

When he first brought up not doing IVF, I panicked. That was our PLAN! We AGREED! How can you say no now? That is not ok! 

Wednesday night, DH came to therapy with me that night, so we could talk it all out and make a decision. It became very clear that neither of us is ready to go into IVF again right now. Other things in our lives are going to take priority over the next few weeks - mostly job stuff. We won’t be able to set those things aside and focus on IVF and ourselves in the way we know we want to when we’re cycling. And, we’re still emotionally healing from our last cycle, and loss. I didn’t want to admit it, but I knew in my heart that I wasn’t ready to tackle another cycle right now. In the session I was able to say how angry and sad and disappointed and frustrated I am to not do this IVF cycle. But, that’s not a good reason to do it.

Last fall, we did an IUI in August and then another in October. By the time we got to insemination in the 2nd cycle, I was a mess. I was so stressed and overwhelmed and overextended. Looking back on that, I know doing cycles one after another isn’t the right approach for me, as hard as that is to accept.

I also feel terribly guilty that this is probably our last chance at an insured cycle, and we’re passing it up. Terribly, terribly, miserably guilty. And, I’m equally angry that we were only able to do one cycle in 5 months due to my never-cooperative ovaries.

My heart hurts over this decision. In many ways I’m not ok with this at all. This wasn’t my plan, and it’s frustrating as all get out. I hate that not even IVF goes the way I had hoped it would. I hate that I put so much work into putting my life on hold, and that I’ll have to do it again someday. I hate that this is going to take up MORE of my life. I hate that I’m probably going to have surgery before I can do another IVF. I hate that I’m probably going to lose the insurance coverage that I have, and need to pay out of pocket next time we do this. I hate that I’m probably going to have to stay on the Pill until I have surgery. Damnit, I hate everything about this!!

I’m not sure when we’ll come back to IVF. Maybe next month, maybe three months, maybe a year from now. In my heart I still believe IVF can work for us; I’m not completely ready to give up on it yet. And, honestly, I’m still “young.” I’ll be 31 in July. Even if I took a couple of years off from this, I’d still be able to go back to an RE.

So, today I’m sad. A little relieved. Sad again. And, readying myself to embrace the life I’ve missed and put on hold for months.

I have endometriosis. The endometrioma (cyst) is still there, on my right ovary. So, it IS an endometrioma. We know it now. I have endometriosis.

I can’t believe this. I’ve had “unexplained” infertility, with wonky ovaries, for two years. (Ok, 15 months since diagnosis.) And, now I have endometriosis. What the hell is going on? I’m too tired to have endo right now. I’ve been through so much already… I can’t believe I just got another diagnosis. Yes, it’s good that I finally have a diagnosis. I’m just so damn tired. And, now I have to go through this again - diagnosis. I’M EXHAUSTED. I just don’t want to do this anymore. IVF was supposed to get me CLOSER to pregnancy, and it feels further and further away every time I go to the RE. I rearranged my whole entire life to “do IVF” starting in January, and it’s been a big fucking disaster. In five months I’ve been able to do one cycle. I put my life on hold, and I’m feel like I’m further away from “success” than I was before. This is so unfair. And it just plain hurts.

The good news is that the cyst is 1/2 the size it was 5 weeks ago. So, being on birth control for 6 weeks straight was worth it. There’s more good news. This cyst will not prevent us from doing IVF. We can do IVF right now. We probably won’t be able to take all of the eggs that the right ovary produces, because the endometrioma will grow, and it will block access to the eggs that I produce on that ovary. But we’ll be able to get some of the eggs on the right side, and any that the left ovary produces. So, IVF is on, if we want to do it.

Of course, it’s not so simple. My new protocol depends on having a normal FSH on my CD2 appointment. This clinic believes that there is very little chance of a viable pregnancy when FSH levels are high. (For my first IVF, my FSH was 14.4… too high for the new clinic. And that clearly didn’t end well.) So, even after 5 weeks of waiting, and BCP, and a shrunken cyst, I don’t have a green light. I’m still waiting to see if my body will cooperate.

This is great news, sort of. We can do IVF, maybe. Just to make it more interesting, this might be our last opportunity to do a cycle that is covered by insurance.

But….

But….

But….

Medically, the best thing to do is a laproscopy to remove the endometriosis and fix any damage that’s been done. DH and I know that surgery isn’t an option right now. Life has just been “too much” for too long, and emotionally I’m not ready for a lap right now. (Yes, I know, it’s often a pretty easy out-patient surgery. I know.) I just can’t do that right now. Maybe in a few months, or a year…

I don’t know. This is just too too much. I know I should be excited about being able to do IVF right now. The cycle will be covered by insurance. The cyst isn’t preventing us from moving forward. It’s another chance to get pregnant. But I am damn tired.

The real bitch of this is that even if I decide this is the path to take, my FSH levels could (and likely will) prevent us from doing the cycle anyways. Part of me feels like the decision is with my body, it’s not up to me (and it’s not, really). If my body is healthy, and the FSH is low, we’ll get the green light. If not, we’re taking the summer off from everything infertility-IVF-surgery-medication-clinic… all of it.

IVF is not easy. Maybe I was naive was for thinking this would all go ahead as planned. I cannot believe how hard this is.

Yesterday my acupuncturist told me that I had “every right to be frustrated and exhausted.” And that, frankly, if I wasn’t, he’d be much more worried about me.

Sigh….

I really appreciate the validation of my emotional and physical states. BUT, it’s even more frustrating and exhausting to know that my life is genuinely this challenging right now.

All in all, I think I’m dealing pretty well - given that these past two months have been so insane. My support mechanisms are really working for me. But, as things progress, I can feel myself getting closer and closer to that breaking point. Honestly, I can’t believe I haven’t reached it yet! But, I know it’s there, and it’s real, and it’s not as far away as I’d like it to be. Fundamentally, though, I’m just plain exhausted. I’ve been tired for a long time, and some times are better or worse. But right now, I have purple circles permanently installed under my eyes. I honestly need a months vacation.

I feel like so many important things in my life are up in the air right now. I’m waiting to hear back from job interviews. And, I’m waiting to find out what my ovaries are doing. Both of these situations have huge, life-changing consequences attached to them. We have decided, pretty much, not to move, so at least that craziness has been eliminated. We have also decided that we’d like to avoid surgery right now, if at all possible. It’s just too much for me - I’m not in a strong enough place today. I do feel like I have lots of options, which also means lots of decisions to make. DH and I are doing pretty well at talking things over, and he’s being so supportive. Our new couples therapy is amazing, and is helping us so much.

I’m also realizing that this grieving process - infertility, miscarriage, and the potential hiatus from treatment - is an ongoing process. I’m going to have bad/sad days for a while. I had thought the last cycle and the loss weren’t affecting me so much. Then Mother’s Day hit me right in the face. Ouch. I think I’m getting closer to accepting that there will be mournful days. And when they happen, I can recognize them, wallow, and then move on when I’m ready.

And, I’m finally admitting how frustrated I am that even IVF hasn’t gone how I wanted it to. I had thought I would be able to do three cycles by now, and get them all covered by my insurance before I leave my job. But, no. In 5 months I’ve only done ONE! And it ended in a loss. So damn frustrating. And now, I may have to have surgery before even being able to do IVF again; forget about TTC naturally! AURGH.

There’s just so much… I’m scared that my cyst will still be there, and I’ll be diagnosed with endo. I’m scared that it will be gone and I’ll be doing IVF again next week. (Ok, I’m excited about that, too.) I’m scared that I won’t get either of these jobs, and will feel like a complete failure at life. I’m scared that I’m not really ready to pursue adoption seriously. I’m scared of taking a break from treatments, and that it will just cause more trauma and not the relief I’m desperately craving. I’m scared to keep going, too.

We’re switching clinics! And, I write that with an exclamation point because I feel hugely relieved and excited about our decision.

Before I get into who said what at our appointments this week, I want to be clear that we didn’t have any real problems at our clinic. We honestly adore RE1, and think we have gotten great care at our clinic. I would still recommend him to a friend. But, our visit today confirmed that a new perspective, and more experience, is going to help us get pregnant. (Also, receptionists and billing staff who smile and say “please” and “thank you” never hurt.)

So, on Monday we went to RE1 for our WTF appointment. Our biggest concern by far was that our transfer had been pushed to Day 6 - yikes. In the end, we did transfer two blasts, and I did get pregnant for the first time. All good things. I also felt well throughout the cycle - minimal side effects, and was very comfortable with the protocol. We all agreed that we felt comfortable with the drugs, and didn’t see an obvious reason to change the protocol. Also, I produced about twice as many eggs as we expected. We took a very close look at the embryology report. My interpretation was “my eggs suck” - but that is certainly not what the RE1 said. Basically, we saw that although we had 10 embryos on Day 3, they were all average grade - a combination of BB/BC/CC. Not ideal. (But, then again, that’s why I’m infertile, no?) Coming out of that appointment, I felt overwhelmed - it’s hard to face the reality of my not-stellar egg quality. The only real change we discussed was a potential Day 3 transfer next time, based on the idea that the embies will do better in ME than in a dish. Sure. I was expecting that. But it didn’t feel like a real “solution.” To top things off we did an u/s, and observed a 3cm cyst on my right ovary (damn you rightie!), and a 2cm cyst on my left ovary - indicating that I might have ovulated this month, despite being on BCP. Ah-mazing.

Sooooooo, today we went to clinic #3 for a THIRD opinion appointment. We liked RE2 from the start. He asked lots of questions. We went through my chart and everything that happened in IVF1. We learned three major things from him:

1. He would have done our transfer on Day 5. (Easy enough for him to say, right?) He said that pushing transfer to Day 6 is very rare at this clinic (about 25 a year, which is not what RE1 said). He basically saw no reason for us to not have transferred on Day 5. Good.
2. He prefers to check FSH levels before starting an IVF cycle. My FSH fluctuates more than it should. Low end is around 5 (normal), the high end is about 14 (not normal). Apparently my March D2 FSH was 14.4, the highest it’s ever been measured at. To him, this is a sign not to start IVF that month, and he would want us to wait for a normal-FSH month. He feels that FSH can effect egg quality. Now, that’s frustrating to hear because being delayed SUCKS. But, having the best shot at success means a lot. So, we add this into our equation.
3. The big surprise: I probably have endometriosis on my right ovary. Yup. This is something that has never been discussed with me before, even in our 2nd opinion appointment. But, my gut completely agrees with him. Rightie has been acting weird for a long time. What he described to me, and what we saw on the ultrasound, explained a lot. Now, this introduces some serious complications, as it means I will probably have to for-go IVF2 for now, and have surgery. Holy crap. 

Other than all of this, he would keep my protocol pretty much the same - adding Men.o.pur to the Go.nal, just for fun. One interesting addition would be DH taking antibiotics for 10 days. Has anyone else done this? New to me!

So, what now? We’re switching all our records and insurance to the new clinic. I’m staying on BCP for another month (straight, w/no period). This is partially to accommodate my schedule and the REs schedule, and will give the cyst on rightie time to hopefully go away. We’ll go for a cyst check on 5/18. If there are NO cysts, we start IVF2. If there is a cyst, we’ll likely decide to have surgery to remove the potential endometriosis and address my uterine septum.

I feel really, really good about this, if not completely overwhelmed. Both DH and I felt comfortable at the new clinic and with RE2. I don’t think I’ve digested the potential of a much-extended time line. But, in terms of care and diagnosis, it feels right. I’m also glad, frankly, to have more time between now and the potential start of IVF2. I could definitely use a little more time to recover, decompress, rest, relax, and maybe even have some fun before we jump back into a cycle.

So, we’re facing some big changes. And, hopefully, good changes.

Yesterday we got the official word that this is a “chemical pregnancy.” My beta came back at 21.2, up from 19.9 on Friday. But, obviously not up enough. We’ve “plateaued” - as the nurse said. So, I’m off progesterone, and waiting for my period to start. (Though the nurse did specify that this was not actually a period. She used the term “bleed.” Delightful.) I’ll also keep going in for betas about twice a week until it’s negative - which is usually hcg=5 or less. She also said it could go up a bit more before it comes down, and it could take a couple of weeks for it all to be over. Then, we’ll have a rest month. And, then we can do another IVF in May. (Barring any further surprises…) I hate not knowing when it will happen. Or what it will feel like.

There are just no words… what a mess.

I’m in shock. (DH is, too.) We’re so sad. I can’t believe this is real. I was actually pregnant. I guess I still am right now? But, I won’t be soon. I put all of our “IVF mementos” in a bag last night - the HPTs, the progesterone, the embryo picture, the petri dish lid, my insurance card… I just stared at it for so long. Seeing those things helps me feel like this is real. I really was pregnant, even if it was just for a little bit. I just need to know that right now.

Thank you, everyone, for your support. I cannot describe how wonderfully helpful your words have been these past few days. Especially those of you who have shared your stories of loss… my heart hurts for all of us. I felt every one of those (((hugs))).

We will get through this. But, damn. This sucks.

The second line on the HPT was barely, barely there this morning. It’s definitely going away… we went in for our second beta this morning. The blood has been drawn. A few tears have been shed. I feel like complete crap. DH is miserable. It’s a pity party over here.

I’m leaving work around 1pm today, so I can go home and cry. I expect the call between 3-5pm.

I’m still glad I was able to have some hope and enjoy those few days. But, now we have to move on to the next phase… shit. This sucks. It’s just so sad.

Yes, I’m technically pregnant. The nurse called this afternoon, my beta was 19.9, and she said “you are pregnant.” But, we all know that 19.9 is pretty low for a beta. This is most likely, a chemical pregnancy, that will end with me getting my period in the next few days. I’m going to keep taking the progesterone, of course, in the hopes that this is a viable pregnancy. I go back to the clinic on Tuesday for another beta. If we’ve doubled (really, more than doubled at that point), this could be it! If not… well. Yeah.

Overall, we are happy. We are actually thrilled. We are even embracing this! We are (a little bit) pregnant for the very first time. And, on our first IVF. We are so encouraged. Of course, this might work out, and I pray it does. But, we now have so much more hope for IVF in general. We’ve already come further than ever before. And, we’re going to enjoy this moment, knowing fully that it probably won’t last.

Tomorrow morning I will be taking a home pregnancy test (or three). And, I better damn see two lines. I’ve earned them.

So, I haven’t posted an update since my brain-fart over the weekend. And, thankfully, our beta is tomorrow! I’ve mostly been happy to be working and sleeping… trying to keep busy, distracted and not obsess about the 2WW (which, when you do a day 6 transfer is blessedly only 8 days). I’ve finished re-reading the entire Harry Potter series (yes, in 4 weeks), and I’ve gone through all of my Gilmore Girls DVDs, again. Last night I finally downloaded season 4 of Mad Men… and, I’ve been cooking and eating a lot. Yum! All in all, I haven’t been freaking out or obsessing too much. I haven’t been insanely emotional. I’ve been relatively calm, though very anxious. I feel like I’m in a bubble… nothing is really happening until we find out if it worked. Everything is just kind of floating around us - all the information about procedures and embryos, success rates, our “real lives.” Time is just passing by until tomorrow, when we’ll know. I have been hopeful, especially when I feel twinges and cramps. (I’ve not felt them with other cycles, so I’m just believing, as hard as I can, that they are a good sign!)

But, I’ve also been realistic. I think it’s just silly to believe that my first IVF cycle would work. Who gets that lucky? Come on. This is a process, a long road; I know that. I’ve put some efforts into planning our next cycle already, which will be in May. I’ve talked to my RE about the “WTF appointment” where we’ll decide what to try next time. (I also have a lot of questions about lab conditions, given our embryo situation this cycle.) I’ve also scheduled a 3rd opinion appointment at another clinic in the city which, *miracle*, takes our weird-ass HMO insurance. So, I feel good. Even if tomorrow is another BFN, we’re on the way to our BFP.

I think I’m more nervous (in a good way, of course) about getting a BFP. I have no earthly idea what that will feel like. I know BFNs. I’ve gotten 24 of them. I know the heart ache and pain and crying and depression… I’m a pro at that process now. I don’t know the excitement and FEAR that will naturally come with a BFP. I told my therapist that my first question to my RE will be about my stupid border-line uterine septum, what are my chances that this will end in miscarriage, and what can I do to prevent that? (I’ve been told before that I have a 30% risk of miscarriage. NOT what I want to hear after struggling so hard just to get pregnant.) Sigh…. what an insane effing journey this is.

But, I do have hope that we will get good news tomorrow. That we will make it to an ultrasound, that I will have a baby. It just has to work. Someday.