Minor Progress

I meant to post yesterday, but the day just got away from me. It was also just one of those days where I wanted to pretend this whole problem didn't exist. Those days have been less frequent lately, but they still pop up sometimes. I'm trying so hard to stay positive and remain focused on the process of it all, but it's hard. It's a balance. A balance between remaining positive and having confidence in your body and your doctors and yet also not being so positive that you get your hopes up only to be let down. It's like in high school when you get excited about your new crush, but you don't want to let your heart get too excited or open up too much in case you find out he doesn't like you. I just don't want to be let down - I'm SO afraid of how I'll feel if that happens. But, some progress has been made over the past two days, so for now, I'm focused on that. The best thing about IVF is that there's so much you have to do that it helps keep your mind busy. 

On Tuesday, I got an email from Shady Grove notifying me that they saw my insurance approval go through for my medication and that one of the medications, Lupron, wasn't covered by my insurance. They said I was set to schedule delivery for everything else through CVS Caremark (the lovely people I've talked to on the phone like 5 times now...), but that they sent my prescription for Lupron to another pharmacy since the self-pay option there is much cheaper. I have to say, I love how organized Shady Grove is. My primary nurse is even out on vacation right now, but they had someone else specifically check my medication approvals, know that one wasn't covered and searched for another pharmacy that would give me a cheaper option. Impressive, I think. 

The last I had talked to CVS Caremark, they were still "processing" my order through insurance and I was waiting for a call from them by Wednesday. Totally wasn't holding my breath for that call since I've heard the same story from them 3 times. But! Shady Grove said they saw the approval come through AND I now had to cancel the Lupron order through them - YAY an excuse for me to call them again and try to schedule my delivery!!!

This time I got to the person I needed right away because I had made sure to keep her extension from the last time we chatted - no more elevator music = win. She said we could go ahead and schedule delivery (YAY!) and she took the Lupron off my order. I waited while she went through the entire list of medications (there's like 10 different things, it's so crazy) and told me how much everything was going to be. I had no idea what to expect for cost, but luckily, the whole order was only $144 - not too bad. AND the delivery is coming tomorrow!! So happy to get that checked off the list!

After talking to Caremark, I called the new pharmacy for the Lupron. I was informed that this medication expires within 14 days, so I have to wait until I know the exact dates I'm using it to place the order so that they can time the shipping correctly. Even though insurance isn't covering it, it was only $60.

I had no idea these medications can expire so quickly. I do kinda wish Shady Grove had gone over the list of medications with me and told me what expires and what doesn't. I still have no idea if what Caremark is sending me is correct because I had no list to compare it to, but I suppose I just need to trust that they've done this a million times and know what they are doing. I can't wait to see all the medications when they get here tomorrow! (omg I sound SO weird saying that - who is excited to see needles and medication??)

Only other news is that I got THE BEST shirts on Etsy for Kyle and I to wear when we finally get to embryo transfer day. I'd show you, but I kinda want to keep it a surprise :) 

Not much going on around here until our injection class on the 7th, but I'll be sure to post my shipment of drugs sometime this weekend!

Medication Frustration

GRRRRRRRRR!!!!!

Oh the joys of phone ordered medication...

Remember like two weeks ago when I said I called the CVS Caremark number to place my medication order and then they were going to call me back in 3 days to tell me how much it cost and to schedule a delivery?? Yeah, well that never happened. 

So, I called them last week to check the status only to be told that whoever placed my order put it in the "wrong place" and now this guy I was talking to (who clearly did not speak good english) was going to put it in the "right place" and all would be fixed now. After expressing my frustration, he assured me that he was going to take care of it and I'd hear back on Friday by noon.

Friday at noon came and went and I didn't hear anything, but honestly, hearing from them was the last thing on my mind. Those of you who know us know my husband was working on a riot team in DC for the inauguration on Friday, and I was so panicked about his safety that I wasn't exactly waiting for a medication call. It was Saturday when I realized that I had never heard back from them. Ugh... I knew I had to call them back on Monday.

So this morning I called again to check the status. After being put on hold for 10 minutes, a benefits lady finally answered the phone. She said she would send the prescription to my insurance today, but that it usually takes 2 days to hear back. YOU'VE GOTTA BE KIDDING ME!!! This is literally what they tell me every time I call. Again, I was assured that it was definitely getting done this time and that I'll hear back in 2 days. At this point, I'd put some serious money down on this bet. But, at least this time I asked for a specific name, number and extension to call so I don't have to re-explain my story when I call back in 2 days. 

And ya know what's incredibly frustrating?? Each time I've talked to someone there, they always ask, "well when exactly do you need the medication by?" to which I answer, "I'm starting IVF in February." But that's never good enough. "OK but like what actual date in February?" UMM HELLO I don't know because it's dependent on my cycle!!!! I've decided next time they ask me this, I'm just going to pick a random date that's soon so they just hurry up already.

I also can't help but think, what if Kyle and I weren't going on our Feb ski trip and I actually wanted to start IVF this month???? There's no way my medication would have been here on time! GET IT TOGETHER PEOPLE!

I apologize for all of my capital letters. See, this is what happens when you talk on the phone to incompetent people and get put on hold and have to listen to awful elevator music. It's not healthy.

I suppose that's all for today. Thanks for tuning in to this edition of, "Alyssa loves to complain" :)

Mock Embryo Transfer: Check!

Woke up bright and early this morning to get to Shady Grove by 8am for my Mock Embryo Transfer appointment. Luckily, Kyle was able to get out of his part time traffic job this morning and could drive me there. I feel bad dragging him to all my appointments when he can only sit out in the waiting room, but it makes me feel less anxious when I don't have to worry about driving in 270 traffic and can just focus on the appointment and getting it over with. And, Kyle has been super supportive and wants to be there for everything, so he insists on coming, which is awesome :)

I'm coming to realize that all these appointments end up being a whole lot of "hurry up and wait." We rushed to get out the door by 7am this morning to get breakfast and make it just barely by 8 (ugh rush hour traffic) only to sit in the waiting room until 8:25 when they finally called me back... ugh. I was told I wasn't allowed to use the restroom until they called me because I'd have to produce a urine sample for a pregnancy test before the procedure (they almost always make sure you're not pregnant before every appointment... like I need more reminders that I'm not). And why is it that as soon as you're told you can't pee, you suddenly have to pee?

Eventually I was called back and shown to my room. More hurry up and wait. I hate this part of the appointments. Ya know, when they tell you, "Ok undress from the waist down and have a seat." For some reason I feel like I have to rush to get undressed and sit on the table with the cloth over me before the nurse comes in. But the nurse never comes in quickly, so instead I rush just to sit half naked and freezing staring at the wall for 10 minutes while I wait more. It's really not that bad, I just like to complain about it. 

To my surprise, it wasn't just a nurse or tech that came in though - it was a doctor!! **gasp!!** I get to see a DOCTOR today?!?! I just assumed a tech or nurse would be doing the procedure - not sure why - I mean, every appointment I go to is new for me so I never know what to expect. I haven't had great experience with tech's here in the past - most of them were confused when they tried to look for things with my deformity and they've also been slightly bitchy. SO, I was super excited to have a doctor. Not only because she was nice, but also because my time with an actual doctor that knows about my condition is very limited and I was pumped to get to ask her the questions that had been building up in my head. 

To be honest I don't even remember her name, it wasn't our normal doc (Dr. Sagoskin), but we will just call her Dr. O (I think her name started with O). Dr. O was able to find my lopsided left uterus right away AND she got pictures of both of my ovaries!! While I laid there and she looked at my left ovary I mentioned to her that the last time I got an ultrasound the tech couldn't get a good picture of my right one. She said, "oh yeah the left one is easy to find, but I can find the right one too, look, it's wayyyyyy over here. Since you have no uterus on the right there's nothing to pull it down so it's a little higher and more to the right than normal." She took great images and went through all of them with me at the end. She said that obviously it's up to the embryo to implant, but she doesn't see any reason why it would have any trouble and she got all the measurements they need for the real thing! Of course, I had to ask, "have you seen successful pregnancies with a unicorunate uterus before?" and she was super positive about it!! She said she actually just had a couple with the same thing and she just gave birth (at full term!!) last month!! Her couple had gone through several failed IUI attempts first before they moved onto IVF and she said we were smart to just jump right in and skip IUI. YAY!

I left feeling SO much better. Lately I've been having this lingering feeling that they are going to find something else wrong throughout all this process, but today reassured me that my abnormal uterus looks "normal" for a unicornuate uterus (Dr. O's words!) and that this IVF thing may actually work. 

So basically this long post was just to let you know that, today went good and we are free to move on with the IVF process!

p.s. - It is SUPER annoying that every time I type "unicornuate" spell check auto changes it to "incarnate." Then I have to go back, type it in correctly again, and then it gives me that stupid red underline. SPELL CHECK, IT'S A REAL WORD I SWEAR! #unicorngirlproblems

The Appointments Begin!

Since we got the green light from our insurance this week, I've been able to start turning the wheels on the IVF process. Yesterday, I was able to chat with our primary nurse at Shady Grove, and she helped me figure out my next steps. Even though we aren't officially starting until my February cycle, there are some tests and things we can get out of the way now!

One of those is my "Mock Embryo Transfer." It's basically a dress rehearsal for when they have my baby embryo and transfer it into my uterus. The embryo is so fragile and delicate and it's SO important that they put it in the exact right spot in my uterus, so the doctor likes to do this pretend embryo transfer first, so that they can get all the exact measurements they need for the real thing. That way, when the big day is here, they will be able to transfer the embryo in one shot without any problems! I like this idea - it makes me feel much more confident that they will get that baby in the right spot. This procedure, like the HSG, has to be done between days 5 and 12 of my cycle. Since cycle day 1 was yesterday (yay..), I was able to schedule it! So next Wednesday at 8am I'll get to do the mock transfer! Woo hoo! 

I also scheduled our injection class! We wanted to do it in February so everything would be fresh in our minds when we actually need to do it. We are going on Feb 7! I did start watching a few of the injection videos online. Ugh, I couldn't even watch the part where the needle actually went in the skin - maybe I'm not used to the whole needle thing yet after all. I am SO not looking forward to that...

Only other update was that I was able to call in my order for all my meds and injections! They have to call me back after the order goes through, and that's when they will tell me how much it all costs after insurance and we will schedule a delivery date. They said I'd probably hear back from them by end of next week. It's so weird because my nurse is the one who submitted all my prescriptions, so I have NO idea what all I even ordered. I imagine we are going to have some giant box delivered though and I'm totally going to look like a druggy. I am SO posting pictures of all that once we get the delivery! Then it will be REAL.

Good News!!

We got our official approval from our insurance today!! And just 1 day after the 2 week estimate so my brain didn't have to agonize over how long it was going to take for too long.. whew!

They have authorized us for both IUI (6 rounds) and IVF (3 rounds) so we can pick whichever one we want to start with. Obviously, we are going with the recommendation from our doctor to just jump right in with IVF to give us our best chance. I feel like I've been hesitant to start any of the videos or injection training until I knew it was official, but now that we are definitely starting in February, I'm motivated to get started!

Tomorrow I'm going to call and get us scheduled for the injection class! (I find it extremely odd how I feel this excitement in my voice about signing up for an injection class... what is wrong with me??). Then we need to get my birth control prescription filled, IVF contracts signed, and complete all the modules and videos online.

We also need to start having conversations about what we are doing with our extra little embryos. I already know I want to freeze whatever we have remaining, but Kyle and I have a lot of talking to do about how that's all going to work out. Shady Grove charges a lot for freezing and then a yearly storage fee. I'd like to keep them frozen until we decide if we ever want to have a second child or not (Kyle is set on one, I'm undecided. I think I will have a much stronger opinion after we see how the next year goes... Also I love how I'm talking about me having a second baby... like, ok Lyss, let's just see if you can even have one first!). But even if we do have one baby and then one day decide to have another, there will likely still be embryos left and we will need to make a decision on what we want to do with them. Are we ok with donating them to another couple? I don't know. I don't think I've allowed myself to think that far yet. Those are scary IVF related questions we will have to ask ourselves in the future. But for now, let's just focus on having baby #1 :)

Sorry for the random rambling, but YAY for today!

Waiting.

Waiting, waiting, waiting. When they submitted our authorization for both IVF and IUI to the insurance company almost 2 weeks ago, they said it typically takes about 2 weeks to receive the authorization back. Tomorrow it will be 2 weeks since it was submitted, and today I was impatient and emailed our Shady Grove fertility lady just to ask if she had heard anything even though I knew she hadn't otherwise she would have emailed me, duh Lyss. I felt dumb for emailing her, but I always just assume people forget about me and I want to remind them that I'm waiting, so at least she knows I'm still waiting and very aware that the 2 week deadline she gave me expires tomorrow. But then also, that 2 weeks fell over the New Year holiday week, so hopefully that doesn't slow the approval process down...

Ugh, my brain.

Anyway, we aren't on as much of a tight timeline as we initially were. Originally I had thought we would start IVF on my January cycle, but then I got a tentative timeline back from Shady Grove and it looked like it would definitely impact our Ski Trip [no I don't really ski, but the resort is SO NICE. I "ski" the first day and then the second day I spa :) ] we have planned for the end of February. I thought we'd be able to squeeze in a month of IVF before our trip, but that was before when I knew nothing about IVF and didn't know I'd have to first take birth control for 14-21 days. Yes, birth control - oh the irony of infertility treatments. SOO it looks like we will start on my February cycle instead which would mean a March egg retrieval and transfer. At first I was annoyed at more waiting, but at least it will allow us to enjoy our big ski trip and one last "hurrah!" before we begin the joys of IVF.

So for now, we wait. We also have tons of paperwork and videos and "learning modules" to go through before we start anyway. Kyle and I were supposed to do it this weekend, but then we didn't cause we were lazy. It feels like homework!!!

Hopefully we will have more info from our insurance soon :)

WOW and thank you!!

Holy crap guys. I was completely terrified to put this blog out into the world of the internet yesterday (I somehow got up the guts to do it thanks to a few awesome friends!), but I was SO not expecting the amazing response it would have.

When we find out we're one of the unlucky few who can't get pregnant, for some reason we feel like we want to hide that information from the world. I felt that way too - always wanting to brush off having kids and pretending like I wasn't ready, just to mask the sadness I felt anytime someone would ask me about it. It's become a natural instinct almost, like, we don't want people to know there's something wrong with us and we don't want people to feel bad for us. So we sit in silence suffering alone and feel like our heart's ripped out every time we see a new baby announcement pop up on our news feeds. And what's the result? A feeling like we are the ONLY ones who can't have kids and EVERYONE else gets pregnant the first time they try. 

IT'S NOT TRUE THOUGH!! We just think that way because Facebook has become the place where everyone shares the highlight reel of their lives - no one posts the "bad stuff." 

But something incredible happened yesterday. When I posted this blog and my story, it was like an entire community wrapped around me in support!! Yes, infertility is bad, but we don't need to suffer alone and we don't need to be embarrassed or feel like we need to hide it. Yesterday I received numerous Facebook messages, comments, texts, and emails from so many women sharing THEIR infertility stories with me!! Women that I know and that I didn't even know were suffering!!! And now they are there for me to lean on and I'm there for them - and that's a pretty awesome thing.

So thank you. Thank you to the 400+ that stubbled on this blog yesterday and wanted to read my story. Thank you to the brave women who reached out to me share their stories. And thank you to everyone who offered their support!!! Just, thank you. I can't tell you how much better I feel.

Lyss

And so it begins...

When I first got up the guts to post our infertility situation on Facebook (am I crazy? yes, probably, but gosh I felt so much better getting it out there), I mentioned that maybe I would start a blog. And here we are, blog time.

If you're just tuning in to my news, feel free to read our about page first.

I'm not really sure how this is going to go, but my goal is to write down all my thoughts, keep a journal here of updates, and hopefully, this writing will keep me sane through this awful process... cause to be honest, I'm not quite sure how my mental state is going to handle what we are about to enter... I mean, endless doctors appointments for blood work, surgeries, and giving MYSELF injections on a daily basis is nottttt exactly my cup of tea considering I can barely get a flu shot once a year while I close my eyes, look the other way, and practice deep breathing. 

I have cried about this, yes, many times, but strangely, I'm feeling ok at the moment. I'm willing to do whatever it takes and I'm not going to let a few (ok.. more than a few, but still) needles stop me. My biggest stress right now is that I just want to get started. It's like knowing you have this super gigantic thing ahead of you but you don't know exactly when it's going to happen and it's all you can think about 24/7. So really, I just want to start and know the schedule and get on with it. But, here we are in waiting mode, for now.

If I would have known how screwed up I was, I probably would have started this blog back in November so I could document all the crap I've been put through so far. But since I didn't, I'll make this first post a timeline of what we've done so far just for documentation purposes :) Here we go...

October 2015 - October 2016: Actually legit tried to get pregnant. Ya know, ovulation kits, iPhone tracking apps, the whole nine yards. I don't think I would have ever wanted to try to get pregnant so soon after our wedding, but since I had that lingering gut feeling that it would take us awhile, (and since we were financially stable and had a house and jobs and stuff...), I figured we might as well see what happens. Nada.

First week of November 2016: First call to Shady Grove to come in for a consultation. We ended up going in the very next week and LOVED our doctor, Dr. Sagoskin. We told him how long we've been trying, I filled him in on all my normal cycle info. He agreed with me that, most likely, since I've always had normal cycles, there's a good chance all the tests will come back normal. In fact, he told us many couples end up with normal test results and what they call "unexplained infertility." I thought we would fall under this category, and if so, I was going to be fine with trying naturally for awhile longer, but I wanted to get the tests complete so that if there was an issue, we could figure it out and take the steps we needed to take while we are younger. Kyle and I went to get blood work done at LabCorp right after the appointment to get it over with. I basically had a panic attack because I was SO not ready for that... oh how funny I was - little did I know what I was getting into. All our blood work came back normal (except I was low on Vitamin D, cause duh, look how pale I am). Blood work done. Check.

November 21, 2016: My first real test at Shady Grove - more blood work and my first ultrasound to look at my ovaries. They showed me my uterus (which according to the tech on the ultrasound looked normal... boy was she wrong). Then she looked at my ovaries and follicles. She did the left side first - looked perfect! Then the right side... which she couldn't find. I laid there for about 10 minutes while she kept trying to search, eventually she found what she thought was my right ovary, but she wasn't sure. She also so nicely made the comment, "wow this shouldn't be so hard to find on a 26 year old!"... wow thanks a lot lady. As if I don't already feel screwed up enough and also, isn't that why I'm here in the first place?!?! Cause most likely my situation isn't normal?? She then brought in a different tech because she had to make sure she was seeing things correctly. Anyway, I left feeling a little confused, but they reassured me everything was normal from what they could see. Ultrasound done. Check.

November 29, 2016: Next test for me: the HSG. The purpose of this test is to see the shape of your uterus and to make sure your tubes are open. For the procedure, they insert dye through a catheter and let it pour through your uterus and out both of your tubes while watching on a mini x-ray machine. If the dye spills out into your abdominal cavity on both sides, then they know your tubes are open. I was super nervous for this test, because I had read online that it can be painful for some people. The thick dye makes you cramp up during the procedure, but the level of cramping is different for everyone. Well, it hurt like hell. For me, it was literally like laying there and letting people torture you - not fun. After my awful cramping stopped, the tech looked at my pictures and said my left side looked fine, but she couldn't see my right side. She said she was going to try AGAIN and direct the dye more to the right... GREAT. So I lied there again, in pain, while she did the procedure a second time. And guess what? Still no right side. And what's worse? She blamed it on me. She said, "You're moving around too much and I can't get a good picture of your right side. I'll send these images to Dr. Sagoskin, but he's probably going to want you to come in again to redo this test." WHAT! You've gotta be kidding me!!! Again, I left confused and totally frustrated. To be fair though, it's possible this tech lady has never seen a uterus like mine in her life, so maybe she was just really confused, but still.

The next day I got a call from Shady Grove. Dr. Sagoskin had looked at my HSG results, determined they were irregular, and wants me to get an MRI. And cue the breakdown... I was devastated that night. And I had no idea what was wrong.

So now I had to make an appointment for an MRI. BUT! like the HSG, it had to be completed on days 5-12 of my cycle. I had just had my HSG on day 12, so I had to wait an entire month until I would be back in that 5-12 day timeframe for my MRI. Yay... more time to sit and think without answers.

But I could not live without answers. So, I started telling my family what I was going through, I requested all my test images from both the ultrasound and my HSG, and I started doing a TON of research on my own. I googled "irregular HSG images" and compared mine to the ones I found online... nonstop comparing. I started finding all kinds of uterine anomalies - all called Mullerian Anomalies.

I read up on each one and learned that these anomalies actually form in a woman when they are in their mother's womb. In a normal female, the reproductive system is formed from two sides joining together. A Mullerian Anomaly (or uterine anomaly... aka a deformed uterus) occurs when those two sides don't fuse together correctly. They could not fuse at all, they could fuse partially, or in the rarest case, you could only have one side - that's me! You can see my one sided self on the right below compared to a normal HSG on the left.

Normal HSG

My HSG

I had determined (with the help of my mom) that I definitely had a specific Mullerian Anomaly called a Unicornuate Uterus, an anomaly that only happens in 1/4000 women, just to be clear, that equals 0.00025%. From the few descriptions I could find online, it matched my experience and my images so well. I couldn't believe I had gone so long without knowing I had this rare condition. [If I was going to be so rare, couldn't I have just like, won a small lottery or something?] And even crazier, everything I read online said that a large percent of women with a unicornuate uterus only have 1 kidney. WHAT?! I might only have 1 KIDNEY?!?

I felt better that I had "self diagnosed" myself with the help of Dr. Google, and just the next day, I got another call from Shady Grove. The nurse told me Dr. Sagoskin had looked at my HSG images again and thought I had a uterine anomaly. They wanted to make sure when I go to my MRI that I get my kidneys checked too. HUH big surprise!! Score 1 to Lyss and Dr. Google!!! Despite my inevitable deformed uterus diagnosis, I felt so proud of myself after this call. 

December 22, 2016: After weeks of waiting, it was FINALLY time for my MRI. Out of all the tests I had done so far, this one was by far the easiest, even though it took the longest. Lay still for 35 minutes and listen to Christmas music? Totally got it. I did have to get an IV so they could inject contrast dye into me, but after all the blood work I had done recently, it was nothing. Already getting to be a pro with needles! I'm a big girl now. Oh, and I found out I have 2 kidneys - yay me!

December 27, 2016: MRI results were back at Shady Grove and we got an appointment to meet with Dr. Sagoskin to go over our results from all the tests. [Oh and by the way, Kyle got tested too. Poor him had to spend one morning "producing a sample" to get his sperm checked. Man I hate boys. And he was normal, in case anyone was wondering.]

We sat down in Dr. Sagoskin's office, he pulled up my HSG images and I proudly said, "I have a unicornuate uterus don't I??" He replied, "yes you do" and finally, I had my official diagnosis. So obviously the next question was, what do we do now?

Dr. S told us that he recommended we do either IUI (intrauterine insemination - sperm fertilizes egg inside me) or IVF (in-vitro fertilization - sperm fertilizes egg in lab and then embryo is placed in my uterus). IVF is much more invasive and requires a lot more medication and monitoring, but, the chances of conceiving are much higher. With IUI, our chances are about 15%, but with IVF, our chances are 50-60%. Most people start with IUI before moving on to IVF, but since I only have one ovary that is connected to the rest of my reproductive system, it makes IUI a lot harder. We could potentially start an IUI cycle, but then have it cancelled if my right ovary that isn't connected is the one producing the eggs. Plus, my feelings were, if I was going to be put through medications, injections and monitoring anyway, I'd rather go all out with IVF if it gives me the best chance rather than wasting 3 months doing IUI.

Luckily, our insurance covers both IUI and IVF, but, it's possible they may make us try IUI first. So right now we are playing the waiting game. We have submitted requests for both IUI and IVF and as long as they approve both, we can pick whichever one we want to do. I'm hoping we will be starting next month!

And that's where we are right now! Whew, congrats to you if you actually read all that. What was originally meant to be a "condensed" timeline turned into quite the novel. I promise my posts from here on out will be much shorter! Any updates I have will be posted right here :)

Fingers crossed we get the green light soon!!

Disclaimer: There is still a lot I don't know about all this stuff, so if I defined something wrong or misspoke, just ignore me - I'm not a doctor ok? :)