What a Difference a Year Makes

Last February I created this blog. I had been struggling with my diagnosis of infertility and I felt lonely, confused and completely helpless. I hadn’t yet gone to a fertility clinic, I hadn’t yet met my RE. I was scared to, honestly. I didn’t know what they would say to me, or if they would take me at all.

A year ago, on February 16, 2016 I wrote this post. Frankly, it was at one of my lowest points. I’m not sure if it comes through entirely in that post– it took a while for me to feel comfortable enough, even in the anonymous internet sphere, for me to be raw with my emotions– but it was a very tough time for me. I started getting a lot of depression after that appointment. I can’t tell you what set me off, exactly, about the cysts- they’re cysts, not a nuclear holocaust- but I do know that it sent me into a dark place for a while. I think it was the utter loss of control and the lack of a plan forward. I remember sobbing in the stirrups (not the last time either) and feeling completely utterly without hope.

I had to create this blog because I was struggling. And that struggle didn’t end soon after. Hell, it’s still not over- the grief and trauma of infertility or recurrent loss doesn’t end when you get pregnant. But through time, connection with all of you, through my IF therapist, through my fertility clinic, through meeting new people and actually BEING HONEST about what I was going through- things really did get better. I had a plan. I had a support group. I had my authenticity.

And here I am. Just shy of 11 weeks. I have acne and bloating and gas and heartburn and I couldn’t be happier with the reason why. I also am in awe of how far I have come from just 1 year ago, and what a wild ride it has been. I know this is something everyone says, but I mean it- a year ago I never pictured myself here, pregnant, healthy, full of hope. I had no plan forward and no one to take me fully seriously (the place I went to before my clinic was like ‘you’re young and skinny, you’re totally fertile, so here’s some femara, check back in 6 months’).

Every day is a milestone, every minute of being pregnant a momentous occasion. But it’s not only the past 2 months that have contained milestones. I went through so much over the course of a year. I had my first cysts, my first clinic visit. My HSG (old place never offered that to me???) Our first IUI. The end of IUIs- when I realized where we were. Everyday shots for my follicles. My egg retrieval. The agony of waiting to hear about those eggs and embryos. My FET. The heartbreak of losing our embryo. The depression that ensued. My ERA biopsies. BOTH of them. And all the feelings of faith and loss in between.

The reality is that everything- my first cysts, my HSG- in the moment, they were all momentous. Frightening. Hard to get through. A big relief in their aftermath. Just because it seems like a piece of cake now doesn’t mean my first IUI wasn’t wrought with fear and hope.

I guess all I mean to say is: I have been through so much in a year. I am blessed beyond belief to be where I am right now, but I’ll never forget what I went through to get here. The scary, grief-stricken moments of infertility live within me and I’m proud of myself for getting through every month of them. So grateful to be sitting where I am today. And so thankful for all of you who have guided me, sent good vibes or prayers, kept your toes crossed, gave me advice and support. Couldn’t have done it without you.

I’d like to catch a break, not a cold.

I’m on a business trip- woke up to catch my flight Tues morning with a sore throat. Yesterday (Wed) it turned into full blown fever and chills and aches- in the middle of our strategic planning. Given that strategic planning happens once a year and is MANDATORY I had to suffer through it, shaky and rocking myself in the corner of the table. Lol. 

Today the illness has moved into my chest and no more aches (yay). HOWEVER I got my second biopsy results back. They’re not what I expected. 

POST-RECEPTIVE.

That’s right y’all. Prereceptive on day 6, post on day 7. 

My RE says basically I will have to do 1 extra dose of crinone (typical days dose is TWO crinones, so this would be more like half dose). My window is somewhere between days 6 and 7. 6 1/2????

He says he’s not seen anyone in his clinic like this: but they’ve only been doing ERAs for about 11 months? But OF COURSE I’m so rare and weird.

So we will be transferring in January with 6 1/2 days of crinone. It’s absurd but it’s the only solution. They know my window has to be between days 6 and 7 because they know when I’m pre and post. 

I know that 12 hours can make a difference. I know it’s possible. I just wish I could have seen that big “RECEPTIVE” label on my labs. 

The silver lining is- thank goodness we didn’t transfer this past cycle with my post-receptive uterus! Thank you to all who weighed in.

We will be waiting for my period to start, probably around NYE and then gearing up for a day 6.5 transfer.

And I’ll keep fighting this cold. Along with the disappointment in these results. Bleh.

Slowing Down for Christmas

Happy December everyone. December is one of my very favorite months, because despite not being religious, Christmas is absolutely my favorite time of year. I love Christmas music, I love lights, I love Christmas trees, you name it. Mr Upside is ethnically Jewish, but TOTALLY non practicing, despite the fact that his uncle and aunt are Rabbis….but still, I like to throw a little Hanukkah in the mix 🙂 The first year we were married I made like 100 latkes for Hanukkah, which I have to admit, were pretty good for a shiksa.

I suppose I love holiday traditions of all kinds.

It’s keeping me busy. My mind occupied. After my second (horrendous) ERA biopsy, there really isn’t anything to do but wait. I got my period* yesterday but this is the first time i haven’t had to call my nurse about it- December, for me, will be a completely natural cycle. No hormones, no pills, not even birth control. I can’t remember the last time that was the case.

I suppose December is meant to be this way. I chose to not have the transfer, and although the decision ate at me for a few days, I am now 100% convinced it was the right one- even with how painful the biopsy was. This is where I am meant to be right now: under the lights of my tree, snuggling with my cat, finishing up work projects, writing holiday cards, enjoying drinks with my husband, making travel plans for Christmas. Now is not the time for 1-line panic attacks, for symptom spotting, for over-analysis of my body.

Whatever holiday you celebrate, or if you celebrate none, I hope you are all restful and peaceful during this last month of 2016. So many of us have had it so very hard, and I wish you calmness and grace these last few weeks. Thanks for always being there for me ❤

 

 

 

 

*I am pretty sure its my period. I was on 6 days of Crinone and then 2 days of provera. My RE wanted me to do 4 days of provera but I only did 2, half because I timed it that way and half because I honestly forgot. Yesterday my flow was relatively heavy, had some clots, etc.  Today is seems very light which is odd. Keep your fingers crossed for me that I get my next period close to NYE for an early-mid Jan transfer. ❤

Good Riddance, ERA Biopsy

I just had my (HOPEFULLY FINAL) biopsy. Holy hell, it hurt worse than last time- and last time was bad. The problem it seemed, was that my cervix was too tight and uncooperative and my uterus was in hiding. My RE tried 5 different catheters and finally had to resort to PRYING my cervix open with some medieval torture device, and then sucking the lining from my uterus.

It. Was. Awful.

I screamed and yelped. And then he DIDN’T get enough after the first try so he went back in there. Good lord.

The chances are high that I will find out I am receptive and I won’t have to push it to another day. Even so, if I am still pre-receptive, no one apparently ever goes past 2 days off the typical window, so they treat you as a day eight-er regardless.

Honestly I think my body was trying to protect itself from what it knew was going to happen. Oy.

So, now I am on provera for a few days, then I get a natural cycle in December, then a hopeful FET in January.

I hope you all had a good Thanksgiving. Mine was very nice- but the holidays are indeed a strange time. Just all the family stuff, people posting pics of their new babies, announcing pregnancies, etc- it really is tough.

A Stressful Choice

…And here I was thinking I wouldn’t have to make a choice the rest of the year!

I had my lining check today- she’s a beaut, as usual. My RE actually told me we didnt have to do a second biopsy- that we could transfer on MONDAY. Basically he said he personally has never had a patient go past 1 day pre-receptivity, and even though its possible, its very unlikely. So basically we could save $1,000, save the pain, and save the waiting. And transfer on Monday. And if it failed again, we could biopsy in Dec/Jan again, if we choose, bc the lab doesn’t need to be open for that.

My immediate reaction was a bit of panic, because I was NOT prepared to possibly have a transfer next week.

My second reaction was OMG OF COURSE I’LL DO IT

My third was wait…Mr Upside can’t come on Monday.

My fourth was “that’s okay, there is no guarantee he could come to one in January either given his schedule”

My fifth was…what if it fails again?

My sixth was “it could fail at ANY point and it wouldn’t be your fault.”

My seventh was “but I wasn’t emotionally prepared for this”

My eighth was “ha, maybe that is a good thing..”

And now here I am, about to drive to my parents for Thanksgiving with no clue what to do. Six embryos remain.

 

Pre-Receptive: Taking My Own Sweet Time

ERA results are in. I am pre-receptive! In a way this makes perfect sense- for a gal who stayed in the womb 2 weeks past the due date, got her 6 year molars at, like, 11- it seems like sometimes I just take a while to get where I am going.

I have very mixed feelings about this information. On one hand, I hate to know I have to do another biopsy (I don’t remember if I blogged about the biopsy here- it was awful). And I also HATE that I will be extra delayed as my lab shuts down in Dec-Jan for cleaning. So if I didnt get it in now, I’d have to wait a whole extra month.

On the OTHER hand, I have, for the first time, found a test that shows me as abnormal. A test that can dictate a change in protocol, something to treat. Up until now, I have been so unexplained in every possible way that it was frustrating- there really wasn’t anything science could tell me to do that could treat a specific issue.

Mr Upside is thrilled with this news- it represents to him a reason for our failures. I am cautiously optimistic about it-emphasis on the cautiously. I know that it doesn’t fix everything 100% of the time. But I’m happy to have more information, and I am so glad I did the test. It’s crazy to think I could have just kept going and failed like 5 more times without knowing any of this.

Next steps? Continuing to focus on self-care. It’s been huge for me every day since we lost our embryo. I work at it every day, but I’m not in the darkness of depression anymore. Yoga has been a HUGE part of this.

My next biopsy will be next Monday, the 28th. The first one was shockingly painful, but the good news is that I really didn’t cramp throughout the day. It was really just the procedure itself. Anything to get me closer to my goal.

 

Good Times, Bad Times

I have good days and bad days. After the previous week, which had been hellish, things got a little better. And then I got tremendous food poisoning. It was awful, but at the time, I was really in survival mode and had no ability to worry about my embryos and lack of success.

When that passed, I felt better but still a few times last week I was overcome with sadness again. I tried to get better right now by taking a bit of a break from work to watch some TV. What really didnt really help that yesterday, my coworker started all this bizarre and unnecessary drama with me, because she had some sort of misplaced sense that I was “stealing” the spotlight of her project, and it was really just an exhausting and awful situation. I don’t handle confrontation well, and after a few back and forths with her via email and phone, I finally had to call our boss to get him involved. He 100% backed me, but regardless of her being in the wrong, I HATE to have bad energy with ANYONE. Ugh. I am hoping things will get better. This is so not me.

I had my baseline on Thursday. For, what we decided what will be our ERA biopsy cycle. The baseline was all good, all clear, but it’s frustrating to know this cycle will only result in cramping/pain from cutting out a chunk of me, rather than a possible pregnancy. And still, if I am pre-receptive, I’ll do it all over again.

But this is the conservative thing to do to preserve my embryos. And they deserve it.

I met a new girl who also had her PGS embryo fail– I went to dinner with her and my IVF twin last Thurs. It’s a relief to know another person, even if what brings you together is shared pain. She is also going forward with the ERA this cycle AND she told me our lab will be shut down Dec 15-Jan 20!!! So if it takes us 2 biopsy cycles, we have no ability to transfer after that for another month! ARHHHHHH it is all so aggravating sometimes.

Well, more good news: I went in to see an immunologist who ran a huge panel of anti-thyroid, ANA, celiac, a bazillion other things and I came back completely clear. No immune issues on the tests! No anti-thyroid antibodies either! Even though I have hypothyroidism. I was shocked.

I am still going to see my demonologist on Wednesday next week to get started on prednisone, for my lichen planus issues. But it’s a relieve to know my levels of immune issues are normal.

I was also able to get a drink with a friend I am only now starting to get close with. She let me know, between drinks and my stories, that she had a miscarriage a month ago. It was still so raw for her, and she had barely told anyone. I hurt for her, but some sort of shame came down after telling me, and I know that sadly, I can relate to loss and grief and inability to feel normal around people with typical reproductive stories. So it had joined us together, and I know when we speak to each other, we won’t just be heard, but understood.

Thank you all so much for your feedback regarding the ERA. We feel confident that taking the next few cycles to do this will lead to more knowledge and peace of mind, no matter how hard it feels right now. For that I am grateful.

 

 

#MicroblogMondays: Fork in the Road

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So we have a big decision ahead of us. To go through with another FET right now, or to take a break to do Endometrial Receptivity Array (ERA) testing. Basically some 25% of women with implantation failure are actually transferring on the wrong day for their bodies.

In order to find out if this is me, we’d have to basically go through a cycle as if we are transferring again- and then instead of getting an embryo in my body, I’d get a biopsy out of my uterine lining. It takes like 2 weeks to get the results back (they are analyzed at the molecular level). If your lining comes back as “pre-receptive” you then have to do it all over again and biopsy on day 6. And if still pre-receptive, I guess you go to day 7.

My RE has said he has seen 0 come back beyond day 7.

The problem is that we have to wait- at least a month but maybe 2 or 3. Three months is so so long.

Mr Upside surprised me by saying he wants to go straight to the ERA instead of transferring another. Part of it is that he doesn’t want to lose another unnecessarily and part of it is he doesn’t want to watch me go through it all again. I am just now trying to find my way out of this grief.

Has anyone done this test? Of course this is my own choice, but…what would you do if you were me?

The FET Diaries: Trying to Move On

First of all thank you so much for all your kind comments not the last post. I didnt have the emotional energy to respond to most of them, but they are felt in my heart and appreciated.

I’m 2 days past negative beta, but I have “known” I wasn’t pregnant for about 5. I thought after my beta things could get better, but yesterday was pretty rough. I had an appt with my IF therapist and cried the entire hour. I was on really shaky emotional ground, but then I had my WTF appt with my RE, and I think it went well.

I basically prepared a massive spreadsheet with all the possible things I wanted to look into and get his opinion on. He totally handled everything well and appreciated I had done my research. Basically he told me “I am disappointed, but I am not discouraged. I understand you are discouraged, but we at the clinic are not.” And that implantation rates for a PGS embryo are still only like at most 60%.

He has agreed to starting prednisone (I need my immunologist or dermatologist to write me that prescription for my skin problems I am having a big flare of right now) and even says that for women with DOR in the IVF process he often uses it as protocol. He is quite opposed to using blood thinners, as the risks outweigh any evidence of benefit, although he wants me to continue baby aspirin. He basically said clotting is more of a miscarriage problem and less an implantation one, and that science does not show evidence that would support the use of a serious blood thinner and that I need to continue baby aspirin.

I talked to him a bit about PIO v crinone and he said pregnancy rates are the same (no statistically difference- I have confirmed this through looking up studies from NIH) but that he is absolutely happy to have me switch to PIO if it would make me feel better and said “it is the gold standard.” The problem with that is I would need Mr Upside around every day for my shots and he travels for work quite a bit.

He left a final decision up to me: to go straight to another FET cycle or to use this next cycle to do an ERA test. So basically everything would be the same except instead of transfer, they would biopsy my uterine lining. Apparently there are a decent # of women (like 20%?) whose linings are not receptive on the typical day 5 and that protocol would be adjusted. My RE seems to think we should try again before ERA (it is expensive, not cover by insurance, time consuming, and painful) because it really could be a numbers game. But he will support whichever I choose.

It seems like ERA is becoming more and more prominent in treating failed FETs (and fresh?). I am going to take the next 4 days to discuss with my husband and figure out what to do. If the second FET fails, he will strongly recommend ERA, which I agree with. I will probably go ahead with FET in November, partially because trying to coordinate a transfer with all the holiday travel in Dec would be a lot more difficult than a biopsy where I would not have to worry as much. It could take 1 or 2 months to deal with the ERA test, which is frustrating but if it leads to more answers, then great.

I am just trying to recover this weekend. We have friends in town. Mr Upside brought me coffee (yes coffee!!!!) in bed and last night bought me a lot of drinks. After tomorrow we will sit and discuss what our thoughts are on next cycle.

xx to you all. Trying to move on.

They Don’t Make Songs For This

Beta came in: BFN, as expected. Big fat zero.

Shocking. I know.

I knew for a few days and cried it out a lot and I don’t really feel like crying anymore. But it’s weird- even though I have been testing since day 5, and I’ve been certain since day 7, it still hurts to hear it from the nurse.

I want to eat bad food and listen to breakup music. Because they don’t make songs for this kind of pain.

My (new) nurse was sweet and already booked me a consult for TOMORROW so I have something to put in front of me. Some destination as I try to put one foot in front of the other.

My IVF twin- she’s my age, we went though IVF and FET within 1 day of each other- she got her BFP. After all this time. I am happy for her- I mean that more than if she hadn’t had infertility- but why isn’t it me? She didnt even PGS test and I did and she got a sticky one and mine died inside the death start that is apparently my uterus. Like who else is just tired of losing and watching other people leave you in the dust?

I don’t know why it failed and maybe I never will. But I’ve compiled a list of possible tests/plans to ask my RE about.

I hope in 6 months this will be in the rearview mirror. But who ever knows.