It’s been awhile since I gave you all a proper update on our infertility journey. A lot of you have been keeping up with me on instagram and continue to motivate me every day to share our story with you all. I have been sharing updates on my instagram stories mostly talking about each step and where we are at the moment. Be sure to tune in for some more timely updates there but I will also continue to share with you guys here in a longer form.
I last left off with the spirit of hope after a devastating (and long) summary of what we had been through with our first failed IVF cycle. For those that haven’t read it, I posted a massive blog post talking about our infertility struggles, IUI’s and first round of failed IVF here. Before I get into everything, I want to remind everyone reading that everything I write about here is purely based on my own experience. Everyone’s body and infertility journey is unique to them and I am by no means a medical resource. Just want to put out the gentle reminder that everything I share is based on my own experience as I try to do my best to share what I have been through. If you ever have an important question, please reach out to your amazing doctors and nurses who will be able to give you all the answers you may need.
IVF Round Three: Third time’s the charm? How we decided to do Round #3
Right when you think you catch a break in between treatments you are thrown in again. But, third time’s the charm right?? It’s almost 1.5 years since we started seeing our fertility specialist and being in the “treatment zone” has become a way of life. I don’t remember what life was like before we started down the path of infertility. That is something scary when I hear it come out of my mouth. It just is the way of life that we know right now. I know this won’t be forever, but some days it seems like a black hole that will never end.
The words “IVF Round 3” are something I have never imagined in our wildest dreams. Ever. It’s funny because when I sat reading people’s experiences, reading books, reading forums, they all talked about multiple rounds of IVF and that seemed like such a foreign concept to me. Having gone through 2 rounds so far, it’s so clear to me why people do so many rounds. Sometimes, you don’t have a choice because the results from each round or so devastating. After round 2, my body was wiped out, and our bank accounts wiped out. I don’t know how people afford these treatments. The idea of putting more money on our credit cards was not something I thought we would be doing anytime soon. But when an opportunity arises, we had to think about our options. One of the most important people through IVF #2 was my trusted nurse coordinator. Having someone in our corner that cared and was accessible to me made the world of difference. I was able to text her questions and get immediate responses. She was always looking out for us and her counsel has been one of the most valuable pieces of the puzzle for us. She works so closely with our doctor, who is equally amazing, but we have more time with our nurse and more contact as doctors are in such high demand. I was in between cycles and going to my doctor’s office for some continued bloodwork. Just like any other appointment. This particular appointment I went by myself. Now granted, Blake has come with me to the majority of my appointments but this was simple blood work and he had a busy work day so he stayed home. I was sitting waiting in the doctor’s office and I could overhear someone’s conversation as they were checking out of the office. The woman was gushing over how much she was going to miss the staff and the staff kept checking in to see how far along she was and wishing her well transitioning back to her regular OBGYN. The minute I heard it, I was crying inside. Why did she get to be so lucky? I want to be the lucky woman with a miracle insider her, wishing the office well and finally leaving this place. All of the woman sitting in that waiting room together… we all hurt a little bit inside. But, before I started to go down a spiral of jealousy, I snapped myself out it. THIS IS WHAT WE WANT. We want a doctor that is creating miracles with us. We want people leaving this office pregnant. We need what’s happening inside these rooms to be positive. I quickly changed my train of thought to gratitude and hope. It’s not easy. I was having a really hard week. But I was determined to hold it together. The wait was long that day and another family came in with their translator. Patient, husband, mother, father, twin girls, and son. All in the waiting room. Impatiently bothering the reception girls when they showed up with NO appointment. Every little thing was setting me off. Finally, my nurse called my name and I felt like I was running into the room to get away from all of this noise. We exchanged some pleasantries and she asks, “How are you holding up Kim?” and I just lost it. I started hysterically crying as my nurse started to hand me the tissue box. I was not ok. She instantly asked me if Blake was supporting me enough and I said of course he was. IVF is really tough. Just when you think you have your shit together, disaster strikes. It’s a never ending cycle of ups and downs. My anxiety was heightening moving into our second transfer. With only 1 embryo frozen in time waiting for us, we were back at square 1. 1 embryo, 1 chance. I was terrified. It’s crazy how the anxiety just builds and builds at these pivotal moments. But I knew that there are only 2 outcomes. Plan A: You get pregnant. Plan B: You don’t. I knew we had to think about our options. If I went into this transfer with no plan for the future, we would be left with only emotional decisions in a dark, dark time. My nurse has always had a super upfront and honest relationship with us. It’s something I really value. She also voiced her concerns for us. She was unsure based off of our track record. We had this beautiful embryo that was genetically normal, implanted at the right time and it failed. We were left with no answers. She was scared for us. She wanted the same thing for us, for us to have a family. So she started talking to me about next steps.
What a lot of people don’t know is that once you gear up for your infertility cycles, you usually have to place orders at pharmacies that ship directly to your house because of delicate medications that need to be refrigerated. Once you place your orders, most of the medications are sent overnight. Once that package hits your doorstep it’s yours. No exchanges, no refunds. That’s it. This is all relevant into understanding what my nurse was offering us. She had a patient that was gearing up for IVF and miraculous, the woman ended up getting pregnant naturally before her cycle started. A side note is, I can’t tell you how many stories I have heard like this. The miracle of getting pregnant before a treatment cycle. SO. Many. Stories. It’s still never been me, but maybe one day, I will be one of those unicorn people. I digress… So, this woman had already ordered all of her IVF meds and was obviously unable to get a refund or return them. The woman told my nurse that she wanted to donate the medications to one of her patients. My nurse then turned to me and said, that out of all of her patients, if we would ever consider doing a 3rd egg retrieval, she would want to donate the medications to us. My heart skipped a beat. If you don’t know, these medications can cost anywhere from 5k-10k depending on how much and what you are taking. This was a huge deal. Every bit of cash you can save when it comes to IVF is a huge deal so the fact that my nurse was offering up some free meds on a platter was something to consider. We were financially tapped at this point, but looking ahead at other options like egg adoption, embryo adoption, and adoption were all equally expensive or even more so. After a lot of discussion between Blake and myself, we decided we had nothing to lose but money, and everything to gain. Having a lot of medications covered did take a dent out of the cost so it was worth it for us to do a third round of IVF. We were all in. Third time’s the charm right?
For IVF round 3, we re-did a lot of blood work and dove deeper into certain blood panels to see if we had missed anything in our testing. My bloodwork came back borderline for certain autoimmune conditions so that was something. I scheduled an appointment with a rheumatologist to see if those levels were indeed elevated or if they were a false positive. My fertility doctor didn’t want to take any chances and suggested I see another specialist. We saw a rheumatologist and the doctor confirmed no signs of autoimmune disease so that was great news. In terms of my other results, we found that my testosterone was very low. Whenever we “find” something during testing it seems like a win to me. If you find something you can treat or address, you are making progress. So this was a positive for me. Since my testosterone was low, we decided that we would do another priming cycle before we started our 3rd egg retrieval.
My Month of Priming
Most of my IVF cycles have started with what the doctor calls “Priming.” It’s where you prime your ovaries with hormones (mostly estrogen) to get them to function as equally and powerfully as possible. Basically so you don’t have 1 overactive ovary and 1 ovary that is underactive. We did some blood work before our Prime and found that my testosterone levels were also low. My doctor wanted to try something different and do a month of both estrogen and testosterone priming. I was game for anything to give me a different result.
The estrogen is easy with just taking pills daily. The testosterone was new for me. They prescribed me testosterone patches that I could stick on my upper arm and change out every other day. You take these meds for a whole period cycle. I always get irritations from any adhesive type of patch medicine so it was something I was keeping an eye on. My skin is sensitive so I knew it would be a bit uncomfortable. By around day 20 of meds, things started to look bad. REALLY bad. I had been switching the patches between both arms and moving the location but it seemed that overnight, both of my arms looked infected. My arms were hot to the touch, itchy like I could itch off my entire layer of skin and the skin itself was red, inflamed, and bubbling. I took photos and send them to my IVF nurse and she had me come in immediately to have the doctor take a look at them. My arms were pussing (sorry I know this is graphic) so much that I literally had to keep gauze on them because they would not stop dripping. This was terrible. My doctor saw my arms and immediately put me on meds to fight infection and sent me to a dermatologist who prescribed special ointments to help treat my arms. What a disaster. I just hope that this infection would not affect my egg retrieval and that this would have all been for nothing. I was on keflex (a super common antibiotic) for a few days, and I sudden started to notice a rash down both sides of my face. The next day, I found the rash in my arm pits, on my legs, and on my arms. WHAT WAS HAPPENING TO ME. I went to the dermatologist again and through talking with her, we discovered I had likely had an allergic reaction to the antibiotic. AWESOME. I mean, can you even believe the odds of this? So I quickly stopped the antibiotic and the rash did end up going away slowly.
During this time, I had some very very low moments. You continue to fight and it’s like your armor isn’t working. I journaled through this time and this is a piece that I journalled during these few days. It prompted me to go back and see a therapist. These were some of the hardest days of last year.
“It’s been one of my more difficult days. Gloomy. Foggy. The morning started out cooking breakfast for Blake and I. I was snapping at every opportunity and the continued tension of our treatment builds and builds. As great as we try to handle it, the stress of doing this for so long wears on us both. I finally took a shower to ease my mind and decided the only thing I could do was to rest and take a nap. A day filled with goals shattered. No trips to target, no prepping for the week, just resting in my bed with my pets. It’s one of those days where I feel like my whole life is falling apart. Everything is suffering. IVF has compounded every emotion, every bump in the road. It feels like my job is crumbling at the same time. Is it IVF’s fault? I am not sure. But I what I do know is that with my whole minds focus on my uterus, it’s hard to really give anything else my full attention. As someone that owns their own business, it’s not the time for me to feel like everything’s bombing. I know that so much of what I am feeling has to be more on the dramatic side because of the hormones I have been taking for more than a year. It changes you in one way or another. I am typically a very positive person and try to take each opportunity to change my mindset in that instant but man, some days are so fucking hard. Even with a new egg retrieval coming up, I know that is a new opportunity to grow our odds but today is hard.
The weight gain is hard. The side effects are hard. I feel like I don’t know my own body anymore. Since I decided to openly share our fertility journey with my blog readers and social media followers, I find it’s been therapeutic to connect with the community going through the same steps. It’s helped me stay accountable to share each step with them, and also helps me take each of my own steps with intention, hope, and strength. The people I have met through this process have been one of the most amazing things. It seems that everyone around me is going through this struggle with me. Sharing my story with so many has been one of the most rewarding things I have ever done in my life. The feeling of being able to connect with others and help in any small way has given me purpose through the rest of this struggle.
I know we will be at the other end of the tunnel some day. But today is a day I can’t put on a happy face. With a blank stare, I am looking at my screen. I am broken and I want to be whole.”
This was the day I decided to go back to therapy. No one should have to deal with these hard emotions alone. I found a new therapist that I connected with much better than the first and it was something that really helped me through this time. We continued to prep and get ready for our egg retrieval.
I then did my initial blood work and baseline appointment for IVF on Cycle Day 2 and we were waiting for the results to get the green light to start our Stim medications. I got a call from the doctor that night that my FHS number was elevated at 20. Normally this should be below 10. She said it might be flaring up because of the microdose lupron I had started the day before. We would have to hold off on starting any medications until we re-tested my blood 2 days later. Meanwhile, my skin was still healing from all the rashes. I was about to lose it. The doctor said if my levels were not down when we re-tested, we would have to cancel this cycle. I was in crisis mode. I NEEDED my blood work to be ok. After all of these allergic reactions, I wanted it to matter. Not be a waste. Everyday is filled with a new challenge. I was waiting for my blood draw and counting down the hours.
I finally had my blood draw and heard from the doctor later that afternoon. Hearing the doctor’s voice on the phone is usually when they are delivering bad news so I held my breath as she explained that she had GOOD news. She said my FHS level was down to 8.5 so this was amazing news. I got the green light to start my Stim meds!!!! WE WERE DOING THIS.
Day 1 is always the scariest day. No matter how many times you do IVF, everytime I start I get those initial nerves of becoming a pin cushion again. But, I will say, having done this 2 times already, I also felt like a pro. I know what to expect. I know I will survive. It’s always that initial opening of the box full of needles and millions of bags of medical stuff and bottles of medication. But, you take a deep breath and you go for it. This time I was on Microdose Lupron AM and PM, Menopur 3 vials AM, and Follistim 375 PM. We eventually added in omnitrope (growth hormone) as well.
Stim day 2 was the day of the headache. These medications always give me the most intense headaches and migraines. My stomach already feels sore and I slept for the majority of the day. It just sucks so much that I can’t motivate to do anything personally or professionally when I am not feeling great physically. I had so much on my todo list today and I didn’t do any of it until the evening. And I likely only got down a few things on the list. It’s really disappointing to have that motivation striped away from me. I know that sounds like an excuse, but the physical side effects can really hold you down. And we are only on day 2… yikes. Hoping that some of these initial side effects will subside in the next day or two. For now, i am focused on drinking lots of water and making sure I am eating a balanced diet. We cook a lot which makes it easier to manage a healthy diet but I also don’t stop myself from having a cookie, or having somethign else that will make me happy.
By the end, I was getting super excited. Our scans were looking good and it was only a matter of time to see how everything was going to turn out. Prepping for the day before surgery is kind of like Christmas Eve. Excited, nervous, but mostly so excited to see if everything you have worked toward will pay off.
Everything went to plan per usual. I actually really like the surgery center and they always make is feel 100% comfortable. I was lucky enough that my IVF nurse requested my FAVORITE nurse at the surgery center for me since she was able to get my IV on the first try. I did not want to have another nightmare scenario where I had to be stabbed 5 times for an IV. My nurse was a legit angel and got my IV in the first try.
We got 9 eggs. 5 of those eggs fertilized. Out of those 5, ALL 5 MADE IT TO GENETIC TESTING!!! This was big news for us. We only had 1 embryo go to testing in IVF 1, and 2 embryos go for testing in IVF 2. So this was a drastic change. Now we just had to wait to hear about the genetic testing results. Our fingers were crossed.
Post Egg Retrieval Recovery
This part is always the part I am most scared about. With my previous surgeries, recovery has been some of the physically hardest times for me. But this time, I switched up my strategy on how to deal. Since I am prone to ovarian torsion, before my egg retrieval I got into the habit of not twisting my body at all. You are not supposed to sit twisted, or twist your body as it can cause torsion (which is also why you should not be working out during your stim and recovery). I made sure to take it even easier on my body being very gentle with any movement. I did my usual moves of rotating on heat pads on my stomach. THESE are my favorite which are microwaveable. I drank my weight in coconut water, gatorade, and pedialyte. I ate tons of salty saltines. I took all my colace. And everything else as usual.
A big difference this cycle was a sleeping pill. I was hesitant to take one as I have heard literal horror stories from so many of my friends of people that have tried sleeping pills but I needed to be sure I could get good nights sleep to avoid tossing and turning which might cause a torsion. So my doctor prescribed me ambien. I started on the lowest dose of regular ambien and found it didn’t knock me out like it was supposed to. So I switched to a low dose time release version of ambien and that was the trick to being able to sleep soundly through the night. I am happy to report that I did not wake up 1 time with cyst pains at all!!!! If you remember last recovery, I would wake up in the middle of the night with gut wrenching pain due to the cysts shrinking and bleeding as they healed. I don’t know if my body just handled things differently this time, or if the sleeping pills just helped my body to overall really relax when it was time to rest… but I could not recommend that enough. For whatever reason, it was my secret weapon and I could cry of how thankful I am that the recovery did not come with this cyst pain. After my recovery and we knew the cysts were gone, I weaned off the sleeping pill.
We ended up actually getting our genetic testing results in person. I was of course not expecting that especially seeing as if I had an emotional reaction I would be in the doctor’s office… but when we went to our room the nurse let us know the doctor would be in shortly and she had our results! OH. MY. GOD. I think I instantly started to sweat. My practice recently brought on a second doctor and she was the one on duty that day. I was not pleased to not see my normal doctor that knew my history but I didn’t have a choice.
She came in with her laptop and told us of the 5 embryos we sent for testing, 3 EMBRYOS WERE GENETICALLY HEALTHY!!!!! We literally almost didn’t believe her when she told us. This was amazing news. After the testosterone infection, allergic reaction to medications… all of this struggle was worth it. 3 more chances to get to our miracle baby.
So total, we have 4 frozen embryos waiting for us (1 from IVF #2). It’s so surreal to even say that out loud. We have been fighting our asses off to get these chances and they are all so very precious.
Next Steps: FET (Frozen Embryo Transfer)
We are currently in the midst of our FET prep and I plan to do another blog post with tips for prepping for Embryo Transfer if you would find that helpful. I think at this point, it’s so nice to know that our chances don’t just ride on 1 egg. You know EVERYONE love to tell us that it just takes 1… but when you have been down the route, done the extremely expensive genetic testing, and still come out with a negative result, it’s hard to see that 1 egg in the same way. We feel so grateful to be looking into the future and have these precious chances to get to our baby. We will continue to keep you guys updated. I also want to thank you all from the bottom of our hearts, for every comment, dm, text, email of support. It’s a beautiful community we have created here together and it’s my privilege to be able to share with journey with you all. You might never know the extent of how much your love and support means to me but I will continue to get down on my knees and thank you every single day. You all mean the world to me.
And to all my friends out there fighting this fight, hold your head up as high as you can, I am with you. Stay strong.