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? :)