I think anyone who gets pumped with a lot of hormones is going to have their emotions amplified. But when a negative life event occurs the same time during fertility treatment hormones, things can get really messy. The word ‘messy’ is putting it mildly compared to the extreme amount of stress I experienced this week. I was already feeling miserable this week, with exhaustion, nausea and bloating. But what happened next really takes the cake.
If you’ve ever used fertility drugs you know that it can alter your emotions, and make it harder for you to keep things in check. Most people who know me, know that I am normally a calm and level-headed person in high stress situations. Imagine you are looking at a graph with a bell-shaped curve. At this time, I’m at the top of the curve, experiencing the height of all physical and emotional symptoms. Now throw in an extremely stressful event that has happened, well honey, let’s just say I’m off the charts now. I was so incredibly angry about this situation. It’s not just an emotional situation but it’s a financial one that could severely impact our future.
So what happened? Several months ago my husband gave a family member his personal information to start the process to co-sign for something, not knowing all the details and while being distracted at work. He wanted to help them out, because they’ve helped him out in the past so he gave them his information. I was unaware of any of this.
Fast-forward to this week, it was morning time and Kurtis goes online to check his credit, because we are planning to buy a house soon. We were looking at houses the previous day. But…surprise! He now has a $46,000 debt that he had no idea about. He thought someone had stolen his identity. Both he and I were scrambling to look up phone numbers to call about how this happened. We called our identity theft company, and started calling the credit reporting agencies. It was about an hour or so into our research and rage that we were able to pull up his credit report.
We found the account that showed $46,000 loan and I pointed to the screen, “It says here joint account.” Then he remembered that several months ago his family member had asked for his personal information to co-sign for something. What the actual f**k!
Let’s just say a whole clusterf**k of a situation ensued. I am at one of the most vulnerable stages of my life, about to undergo fertility treatment. My doctor and medical team have been advising me for months to do anything and everything to reduce stress. And then this family member comes along and drops a massive bomb into our lives.
I let them know that their actions have most likely led to us not being able to get a house or financing for future fertility treatment or adoption. For my own sanity, I had to cut them out of my life. I needed to set that boundary because I cannot handle any extra stress right now. That family member picked the absolute worst time ever, to take advantage of my husband. I am hoping and praying that the stress I am experiencing right now does not impact my upcoming embryo transfer. The last time I experienced this extreme amount of stress was when my father passed away. I was pregnant at the time and I lost that baby.
I have got to do anything and everything in my power to continue to reduce my stress. Whether it’s yoga, going for walks, playing with the pets, watching funny movies. Whatever it is, I need to do lots of it to counteract this horrible situation. Self-care is going to be huge for me until my embryo transfer, which is coming up really soon in nine days.
Have you experienced extreme stress during your fertility treatments or pregnancy? How did you manage your stress? Let me know in the comments below.
My doctor had me start a new frozen embryo cycle right away after my last one was cancelled at the last minute. This will make it the third time I’ve prepped for my FET for my one and only embryo. It’s incredibly exhausting physically and mentally. I would describe this process as being dragged face first through a field of mud. Occasionally someone will ask “how are you?” and you lift your muddy, weary face and say, “I’m good” then plop your face back into the muck to be dragged some more. I’m on week 21 of being dragged around in this seemingly endless field of mud, I mean, 21 weeks of prepping for my FET.
I’ve completely restarted my FET cycle. It’s a mix of emotions. On the one hand I am glad I was able to restart right away, while on the other I feel ready to completely give up on this entire process. But I cannot give up, I have an embryo waiting for me. I’m hoping my mental health will catch up to the fertility treatment process happening to my body. I feel my brain and my body are completely disconnected.
I now totally understand those women who decide that fertility treatments are just too much to deal with and they decide to stop. I also understand the women who decide that not even adoption or fostering feels right. I get it, 100%. I feel like I’ve reached a limit I’ve never reached before where I am just so over all of this.
I’ll be honest, in the past I didn’t understand how women could give up on treatments when there was a chance they could have a child. I also didn’t understand women who wanted children so badly, had failed treatments but then decided not even to adopt. The child-free lifestyle seemed to confound me. Out of curiosity, I read a couple books on the child-free lifestyle. I wanted to open my mind up to the realm of possibility that I may be living that way if my treatments don’t work out. At this point, it’s a newer option on the table I hadn’t considered before.
Scary Side Effect?
Just before bed I drank a glass of water and looked at myself in the bathroom mirror. What the hell?! I looked like a different person. My face and neck were really swollen, puffing out about 1-2 inches on all sides. I put my fingertips to my neck and felt that my neck was tender and sore. My face didn’t hurt but my throat did. Was this a side effect to my medicine? I started my new FET cycle with a prescribed double dose of Lupron, twice as much as I was on before. Could this be some weird reaction to the medicine?
But in the morning my neck and throat were even more swollen. I was worried now. What if I am having an allergic reaction to my increased dose of Lupron? I was also feeling abnormally hot. I checked my temperature at it was 99.8°F. The increased temperature had me concerned it was possibly a mild case of COVID. But a swollen face and neck? I don’t remember that being one of the symptoms of COVID. I called my clinic and a backup doctor returned my call.
He asked me a series of questions and told me he thought my body was fighting off some sort of infection. He told me, “If you don’t feel better in the next few days we’ll need to cancel your embryo transfer.” Are you kidding me? Cancel my FET again? I decided to become the laziest of lazy people and rested that whole weekend. I drank lots of water and binge watched TV, hoping that the rest would help. My swelling went down and so did my temperature. By the time I received a followup call from my clinic on Monday I was feeling okay and they told me we could continue with the FET process.
That same Monday I had my suppression check. My ultrasound looked good and she said, “You are definitely suppressed.” This was music to my ears, the good news I needed to hear to hopefully help turn things around for me. My bloodwork was also good. My nurse called me later and told me I could start my Estrace pills three times daily and drop my Lupron dose down to 5 units twice daily. I think it was possible the Lupron may have been causing my face and neck to swell, but because my Lupron dose got lowered I don’t think we’ll ever know what was causing it. But I’m back on track and hopefully my next monitoring appointment will show my body is on track with everything.
Not Enough Syringes
Since I had to restart my FET cycle this month and I was on different doses, I thought I would double check to make sure I had enough of what I needed. I had enough medicine to last me, but after counting all of my syringes I realized they did not give me enough.
I think part of the problem was that I was on double the dose of the typical Lupron pack they give you. So even though I had enough Lupron left over from my previous cycle, I did not have enough syringes to keep up with my double dose. Not a big deal, I thought. Just call the pharmacy and ask for more, syringes should be free I thought. When I’ve ordered my medicine in the past they normally don’t charge anything for the syringes, they only charge for the medicine itself. Here is my confusing conversation with the pharmacy staff:
“You’ll need to call your doctor and ask for a new prescription,” the pharmacy staff told me.
“No, I don’t need a new prescription, I just need the syringes,” I said.
“I see here you don’t have any more refills, so you will need a prescription” she said.
“But I have enough medicine. I just need the syringes.” I could feel my hormonal anger beginning to rise.
“We need a new prescription,” she repeated.
“Does that mean I will have to pay full price for medicine I don’t need just to get the syringes?” I could hear myself trying to control the anger in tone.
“No, we just need a prescription for the syringes,” she said.
“Prescription for syringes? But aren’t they normally free?” I asked, confused.
“Yes, normally they are, but because you are out we have to have the doctor confirm that you need more. You’ll have to pay $6 for the syringes and $39 for the shipping” she explained.
“So you’re telling me, because you didn’t put the proper amount of syringes with my medicine to begin with, I now have to pay extra to have it sent to me?” I wasn’t yelling, but I was definitely not happy.
It’s at this point that my medication induced hormonal anger flared up inside of me, but I was able to tamp it down when I told myself that I needed to not get emotional and listen to what she was saying.
“We received your prescription from your doctor, including how many syringes to send. So you’ll need to contact your doctor. We are unable to send syringes without a prescription because some people use those syringes for drugs” she said.
Now I was finally starting to piece everything together. It was my clinic that did not give the right amount of syringes to my pharmacy (to account for my double dose of Lupron) so it wasn’t really the pharmacy’s fault. The pharmacy is also regulated by law to follow prescription guidelines, in order to prevent manipulation of the system by illicit drug users who are seeking free needles and syringes. I had no clue that was even a thing. I messaged my clinic and they sent out the prescription to my pharmacy. I called the pharmacy and I had to pay the stupid shipping fee of $39 plus $6 for the syringes, for a total of $45. It should be arriving soon. This is just one example of the many frustrating things that can go wrong during fertility treatment.
Move or Travel Abroad for Treatment?
If you follow my blog you know that I am a planner. I always have a backup plan. I joked with my friend, “You know how people say they have a Plan B if their first plan doesn’t work. Well, I am near the end of the alphabet with the plans I’ve gone through for trying to have a baby.” It helps me to have a plan so I have something to look forward to, as opposed to not having a clue what happens next. In my recent post I talked about how Kurtis and I were on different pages with our family building plan and how this affected me. Well, he’s starting to open up to the possibility of making a plan with me.
I’ve done a lot of research, and to my understanding, the only job in Alaska that offers IVF benefits is Starbucks (they offer this voluntarily). If for some reason I can’t get a job with Starbucks, I might move out of state for fertility treatment. In the past we talked about the possibility of me temporarily living out of state for treatment. In Alaska, we are ranked one of the top three worst states to live in for fertility services. We have zero reproductive endocrinologists, no RESOLVE infertility groups, no fertility clinics, and not a single law in the books mandating fertility coverage. At this point all of my treatment is being done fully out of state. Lately, I’ve been thinking more of the possibility of relocating for treatment if this FET does not work.
Kurtis said he would most likely stay behind while I do treatment. He has a decent paying job with good benefits, we have the condo we own with a dog and cat. So it’s easier if only I leave for treatment as opposed to us uprooting everything and starting over in another state. If I got a job in another state I would need to work it long enough to get insurance benefits before I could start treatment. So I may be out of state for 3-6 months possibly.
I researched states that have mandated insurance coverage for infertility. It’s incredibly complicated and each state has different mandates. One state might include coverage until a certain age, where another state requires a proof of a certain number of years of infertility. A couple of the states I had an eye on were Connecticut and Massachusetts, because they seem to mandate for more expansive coverage. I’m also curious to learn if I could use coverage from that state and go for treatment at CNY in Syracuse, New York. CNY is one of the more affordable clinics in the US. I didn’t delve too much into researching, because I want to keep an open mind at this point.
I also did some research on affordable clinics overseas. One of the countries I’ve been hearing about over and over for affordable IVF treatment is the Czech Republic. There are a handful of clinics in and near Prague that seem to have top quality treatment. Some of the services they provide are really advanced. My clinic in Seattle doesn’t even offer some of the more advanced techniques like assisted hatching and embryo glue, to name a few. Much better price and more advanced? Where do I sign up?
I emailed a clinic in Prague to ask about pricing. They responded very quickly with a full list of prices for every one of their services. They were very upfront with their pricing, which was nice to see. Of course the main drawback to traveling abroad right now is COVID and the high prices of flights. If I chose to go this route, I will most definitely do more research and seek out other women in the infertility forums that have actually gone to Prague for treatment.
I need to sit down and do the math for both options of moving out of state temporarily for insurance coverage compared to getting treatment in another country. When I’ve run preliminary numbers it looks like traveling abroad is the more affordable option, even with the expensive plane ticket. That goes to show you how expensive treatment in the US really is.
But my future depends on what happens with this upcoming FET. I’m hoping it will work, but I’m also being realistic and considering my options if it doesn’t work. I’m happy that Kurtis is being more open about planning for the future. My next major hurdle is my monitoring appointment I have on July 24th. I’m hoping they will say everything looks good and I can book my plane ticket to Seattle for my FET.
Well, things took a turn for the worse. My clinic decided to cancel my FET for a couple of reasons. I felt really sad at first and thought “When am I ever going to have our baby?” This process can be so emotionally and physically draining. But my clinic started me on a new protocol that will hopefully help me respond better to the medicine.
If you remember from my previous post I talked about how my uterine lining was half the size my clinic needs it to be in order for them to do a transfer. When it comes to frozen embryo transfers it’s all about the lining. My lining needs to be 8mm for the transfer but mine was half that at 4mm last week, and when I did a follow up ultrasound it had risen to 6mm (so still not what they need). I’ve always been a slow responder with the medicine they give me, even on higher doses.
After I completed that followup ultrasound I decided to send off a message to my clinic that I completed both the ultrasound and the blood test and that they should be receiving the results soon. I like to send these messages to ensure they keep an eye out for the results, which they need ASAP from my STAT same-day tests. They need those same-day test results because it will determine whether I need to continue with my medication that night or if I need to change all my meds right away. It all depends on how my body reacts to the medicine and these tests are like a current snapshot of what my body is actually doing.
I sent off the message to my clinic, then I noticed that the backup nurse I spoke with last week about starting my new meds had left me a message in the patient portal. I didn’t realize she would send me a message after we spoke. Last week she told me to continue with my Estrace three times daily, continue Lupron at 5 units, and then to also add in vaginal Endometrin at bedtime to help with my lining. Or so that’s what I thought she had said.
But as I was now reading this message she sent me timestamped right after we spoke, it was saying something different. But this message said nothing about Endometrin being taken vaginally, instead it said “start taking Estrace vaginally at bedtime.” Take Estrace vaginally? She must have mistakenly typed Estrace when she meant Endometrin, right? I was already on Estrace three times daily but I was taking it orally. The only medicine I have that is prescribed as a vaginal suppository was Endometrin. It stands to reason that she made a mistake with her typing.
I sent off a message to my clinic to double check on whether I was supposed to be taking Estrace or Endometrin vaginally at bedtime. The backup nurse didn’t respond this time, instead it was my regular nurse. These were her first two words of her message, “Oh, no…” And with those two words a lightning bolt of realization hit me, I had been taking the completely wrong medicine for five whole days.
My nurse called me shortly after speaking with the doctor about the situation. I told her, “I could have bet my life that she told me on the phone to take Endometrin and not Estrace.” I was certain of this. My regular nurse told me that we would need to cancel my frozen embryo transfer completely because with the fourth monitoring tests they could see my body was beginning to ovulate. “The Endometrin put you into an ovulatory phase, which is not where we want you right now. It changes the lining. I’m so sorry Julie. I guess this transfer just wasn’t meant to be.”
Somehow when she said “this transfer just wasn’t meant to be” it actually helped me to hear that. My uterine lining had never measured what they wanted it to be at any point during the monitoring appointments. That fact, in and of itself, is enough to cancel a transfer. Now add in a major medication mistake, well it was the final nail in the coffin. It was over.
So now what? My nurse spoke with my doctor and relayed a new game plan. Although this transfer had been cancelled, they wanted me to restart a new FET cycle right away. I am now starting all over with the birth control pill and Lupron. But instead of the same protocol they have me taking double the dose of Lupron. I’ll be taking 10 units of Lupron twice daily, instead of once daily. I don’t recall ever being on this high a dose of Lupron before with my egg retrievals.
That same day I learned my FET was cancelled I could feel the anger growing inside me about the situation. I could have sworn the backup nurse had told me Endometrin, not Estrace, and now here I am with a cancelled FET. This has to be her fault right? Maybe it would have been cancelled anyway with my thin lining but maybe not. I remembered that I had wrote down notes as she was talking to me. Maybe if I could find that note I could prove that she did in fact tell me the wrong thing. I remembered I had taken out the trash that morning, with the note inside. There was no way I could prove it.
But then I remembered that I had taken a picture of my note of instructions. I occasionally do this in case I need to refer to my notes later. Well I found the note in my phone’s photos. As I was writing the note I had just woken up and was trying to decipher the backup nurses’ rapid-fire instructions and test results. This note is a hot mess. I had to ask her multiple times to repeat herself because she was talking so damn fast. Why the hell did I have to talk to a backup nurse during a pivotal time in my medication changes? But as you can see in the photo of my note, it turns out that she did tell me Estrace, not Endometrin.
Somehow my sleepy, confused brain was certain she told me Endometrin. So it wasn’t her ‘fault’ after all. My anger that I had been directing towards the backup nurse dissipated and I actually felt relief that it wasn’t her fault. The relief was knowing that my clinic didn’t tell me the wrong thing. If they told me the wrong thing I think I would have carried that anger longer.
So did that mean it was my ‘fault’ that my FET was cancelled? I remembered my regular nurse’s reassuring and empathetic words that helped me to process the bad news, “it just wasn’t meant to be.” My uterine lining had been too thin this whole time, and it most likely was going to get cancelled anyway. My body wasn’t doing what it was supposed to be doing even when I was taking all the medicine as they were telling me to. My FET was already postponed even before my medication mistake. I decided to forgive myself because all signs were pointing to a cancelled FET anyway.
I was dreading having to reorder my medications to start a new FET cycle. I was only part of the way through my cycle and hadn’t even started my PIO injections, so I only needed to reorder Lupron and Estrace. In total I had to pay $592, which was better than I was expecting. I was thinking it would be double that. I’m now focusing on my new FET cycle that I’ve already started. My new tentative transfer date is July 30th.
This week sucked, not gonna lie. I’m concerned about flying to my clinic in Seattle during COVID. On top of that I found out my hotel is close to the CHOP protest site, which at this time I’m writing has seen three shootings. The police have vacated their own precinct due to the building tensions there. Things have escalated just this week down there. Meanwhile back in Alaska, I got some not so great news with my 3rd monitoring appointment. I felt ‘all the feels’ this week, that’s for sure.
The other day I went to visit my Mom who lives about an hour away from me. My brother got there shortly after me and let me know I had a flat tire. Great, I thought. But luckily he offered to change it. Not too long after he told me this my phone alarm went off with the label “Lupron 7:00pm.” I brought my Lupron medication with me so I could inject it at Mom’s while I visited. One problem, I had no syringes to inject them with because I had forgotten them at home. Flat tire plus no syringes equals instant ‘panic mode!’
My brother was able to quickly put the battery in the other car I have in storage at Mom’s house. I would drive home in my backup car while he worked on fixing the tire on the one I drove to Mom’s. I started gathering my things and ran out to the car. But I forgot something, my Lupron! I was so frantic to get home in time that I almost forgot my Lupron sitting in Mom’s fridge. I realized it at the last minute, grabbed it, and told my Mom while laughing, “My s***’s all f***ed up.” At least I was able to find the humor during the chaotic situation. Murphy’s Law, am I right? Now picture yours truly speeding down the highway like a madwoman (highly illegal, I know). I made it home in about 40 minutes, when it would normally take me an hour for that drive. So I was a little late for my injection, but I could have been really late had I not had my brother’s help.
Treatment During COVID & Seattle’s ‘CHOP’ Protests
You may have read in one of my earlier posts that I was doing a ‘digital detox’ to help reduce stress before my embryo transfer. I decided that my digital detox would consist of avoiding two things: the news and social media. With the exception of briefly checking my social media once to see if I won an IVF grant, I’ve been able to cut out social media. As far as exposure to news, I do not put it on or seek it out. But recently I decided to do a Google search of traveling to Seattle, with the intent of finding out if there were specific COVID instructions travelers needed to follow.
I wanted to know if I need to self-quarantine while there in Seattle, like travelers have to do upon arrival to Anchorage right now. While I was looking up the guidelines for travel there was also a link about Seattle’s CHOP. “‘CHOP’ what is that?” I thought. I decided to click on it, since it seemed to be related to traveling to Seattle right now. As you may have already heard, CHOP stands for Capital Hill Occupied Protest, also known as CHAZ, which stands for Capital HIll Autonomous Zone. The police precinct was apparently vandalized and vacated by all police due to safety concerns with protesters who took over six blocks and declared it autonomous from police. There have been several shootings there and one death so far.
I’m not going to delve into the politics of the situation, if you are curious you could just do a search of Seattle’s CHOP protests and learn more. But the reason I bring all of this up is that my hotel I have booked is only blocks away from this protest site. I am highly concerned about their perimeter expanding or more violence occurring once police try to take back their station and the protesters fight back for their “police-free” zone.
I’m considering getting a different hotel, which is unfortunate because I really felt comfortable and safe at that hotel the last time I was there. If I change hotels I would need to do it soon since I will be in Seattle in less than one week, which doesn’t give me much time to plan. On top of that I am concerned about traveling during COVID. So it’s stress on top of stress while doing fertility treatment. I need to pull out all the stops on finding my zen despite the world seemingly crashing all around me. I’ve been dealing with internal stress from infertility and now I have to cope with the external stressors of COVID and CHOP. These are crazy times and I think everyone is in the same boat with really needing to focus on finding balance and reducing stress in healthy ways.
3rd Monitoring Appointment Results
Bad news. Yes, just when I think everything is lined up and I am good to go with my transfer I find out that my body isn’t quite ready yet. On June 26th I had my third monitoring appointment where I did my repeat ultrasound and bloodwork. The one good thing about what they saw this time is that my cyst has gotten a lot smaller, although I forgot to ask how big it was measuring now. For this ultrasound, which was supposed to be my last one before I was to get on the flight to my clinic, as it turns out it showed that my uterine lining is not as thick as they need it to be for my transfer. They said my lining should have been measuring at 8mm. My lining was half that, at 4mm.
My estrogen levels are also too low. Previously my estrogen levels were double the level they were supposed to be, but now they are too low. Come on now, give a girl a break already! So my estrogen level for this third monitoring appointment was measured at 127.8 pg/mL when it needs to be 150 pg/mL for them to approve me to come to the clinic for my transfer. They advised me to do another (yes, another) monitoring appointment. So I will be doing my fourth monitoring ultrasound and bloodwork on June 30th. I asked my nurse if it was possible that I would be ready on the 30th and if I could keep my flight and hotel dates. But she said, “Most likely not. I would wait until we let you know for sure that you are good to go.” She also said that I will tentatively be on the schedule for my FET for July 6th, but she emphasized that it is not a for sure date at this point.
Hospital staff blew out my vein during blood draw to check my estrogen levels.
I spent that afternoon canceling my hotel and waiting for a call back from the airlines (2 hour wait time by the way) to cancel my flight. I knew this delay in treatment was a possibility, especially since each treatment I’ve done in the past were also delayed, but this time it kind of hit differently. I’ve been anticipating this transfer for so long and I’m starting to wonder if they will cancel my transfer completely for this cycle.
I’ve never done an FET before so I don’t know what to expect. But based on what some other women have mentioned in their infertility blogs, a canceled FET can happen if the uterine lining is too thin and it doesn’t reach the thickness needed while on all of the medication they provide. My nurse advised me to start Endometrin (progesterone), and to continue with my Lupron 5 unit dose nightly as well as continue my Estrace (estrogen) three times daily.
As far as my symptoms it really varies day to day. Some days I am pretty much worthless with all-day nausea. On those days I’ve been binge watching 90 Day Fiance, which by the way is a perfect distraction from thinking about fertility treatment. There’s so much conflict and drama in that show you’ll forget about your own problems and say to yourself, “My life is going swimmingly compared to these people.” My nausea was so bad one day that I threw up six times in one morning, but I haven’t thrown up since.
I’ve also been dealing with headaches, what’s new right? But surprisingly when I eat a meal, drink plenty of water, and occasionally take a Tylenol this has helped keep these headaches from turning into full-blown migraines. I haven’t needed to take my migraine medicine in quite a while, which I’m trying to avoid anyway because if it’s not recommended during pregnancy then I want to avoid it also during my fertility treatment. The only time I would reconsider taking my migraine medicine during this time is if it is so bad that it would otherwise put me in the ER. Thank God I haven’t had one of those in a while.
As far as the emotional side of my symptoms, well I’d describe it as having little control of my emotions. In the beginning of my suppression phase the medicine I was on made me feel incredibly agitated. But now I’m on different meds and I am feeling more weepy. I cry easily but I don’t cry for long. For example when I see someone crying on TV, I will be crying with them. I cried when I thought about the dishes in the sink. And my personal favorite, I cried because I thought my dog looked cute. Yes, I was so moved by his cuteness it brought me to tears.
I’ve also had sleepless nights where I toss and turn, but also an equal amount of nights where I get plenty of rest. My physical symptoms and emotional symptoms vary a lot each day. I’m definitely in the ‘sad panda’ phase. I was getting so excited about my transfer date that was coming up on July 2nd, but now everything is up in the air and I don’t know when it will be. It all comes down to whether my body decides to adjust to the medicine I’m on or not.
If my FET gets cancelled due to my lining not being thick enough or my estrogen level not getting higher, I will have essentially wasted $1500 on medication and monitoring costs. That will be a tough thing to deal with. But I suppose another way to look at it is to think, “At least my clinic is being cautious which may help prevent a failed transfer or miscarriage.” There is another part of me that is angry that my clinic can’t seem to figure out the correct dosage for me to be on. How is it that they consistently miss the mark each time? They know I’m a poor responder and slow responder to medicine, so why haven’t they changed their approach. But then again I have zero medical training with reproductive technology, so what the hell do I know.
I’ve heard some women who are poor responders to high doses of IVF meds have tried alternative methods. Some of those alternatives include mini-IVF as well as IVF that follows a woman’s natural cycle. Perhaps if this upcoming transfer does not work out I will look into these options more. I plan on asking my clinic to print off all of my medical records. I want to be able to bring my records to a different clinic in the future and show them everything we’ve tried already. That way I don’t waste any time or money doing the typical high-dose IVF treatments when it does not seem to be as successful as they were hoping. It could also be a matter of a certain medicine I’m on or dosage. Something has to give.
At this point I am not feeling that optimistic. I am still hopeful though, which I think is different from having optimism. I hope things go well and this transfer works, but I don’t feel optimistic about the outcome at this point. It’s just how I feel. Who knows, maybe my uterine lining will thicken before I run out of my meds, and I could still do my FET this cycle.
As you probably remember in my FET Prep Week 15 post I was stressing about how my body decided to start my cycle, rather than adjust to my medication protocol. Well as it turns out I had a cyst that was totally taking hostage my plans for my frozen embryo transfer. Instead of cursing this cyst that very much deserved cursing at, I had a “whatever” attitude, bordering on ambivalent about everything.
So this is the third fertility treatment I’ve done (two egg retrievals before and now this FET), and I can without question say my body never does what is expected of it. It was incredibly frustrating for me, especially when I spent almost one month out of state waiting for my eggs to get to the correct size for my second egg retrieval which ended up a complete bust anyway. But instead of being totally thrown for a loop with this frozen embryo transfer I decided to take a different approach. I told myself ahead of time, “You know your body is a rebel, so plan for things not to go according to plan.” This actually helped, because when things inevitably didn’t work out as planned I was able to keep my s**t together and say to myself, “Well duh, you know your body, and you know it’s not going to be aligned with their schedule. So don’t stress. Just focus on your next immediate step.”
So what exactly happened? Well I had a fat cyst that was hanging on and was way too comfy, not wanting to go anywhere. Last week my fertility clinic said that if the cyst on my ultrasound was over 10mm I would need to do a blood test to check my estrogen levels. Well not only was my cyst almost double the size they would allow (has to be less than 10mm but I was measuring at 18mm) but my estrogen levels also turned out twice as high as what they wanted. My nurse said, “I’m sure you’ll get your period over the weekend. Let’s schedule a follow-up ultrasound on Monday. In the meantime keep taking your 10 units of Lupron and don’t start the Estrace yet.” Essentially I was not moving on to the next step of medication that I needed to to stay on track with my calendar.
Instead of dreading the ultrasound or being overly optimistic I decided to try to remove my emotions from the situation because it’s something I have zero control over. On Monday the ultrasound tech told me my cyst was still measuring too big, at 12mm when it needed to be under 10mm. Not surprising. I drove over to the hospital to get my blood drawn for my estrogen levels. Thankfully not too long later my clinic called with the good news that my estrogen levels had dropped to baseline, which is exactly what they wanted to see. They also said my lining looks nice and thin, also what they wanted to see at this stage. And as it just so happened, not fifteen minutes after that phone call with my nurse, my long awaited period finally started. I think if it had been delayed any later my whole FET cycle might have been cancelled. My body likes to keep me in suspense.
I find it amazing how everything can look so bleak and pointless and then suddenly things take a dramatic turn around just in time. It is quite head spinning. I think had I not made the decision to try to remove my emotions from this situation I would have been a total wreck. I was like, “Nope! Not going there emotions.”
Now that things are back on track, my nurse had me lower my Lupron dose from 10 units down to 5 units and I am taking an Estrace pill three times daily. Not to mention I’m taking lots of vitamins twice a day. They’ve tweaked my schedule slightly to where my original followup ultrasound was switched from June 24th and is now June 26th. So as long as my ultrasound on June 26th looks good I will still be able to travel to Seattle as originally planned. I should still be able to do my FET on July 2nd as long as nothing major happens.
On Different Pages with Spouse
Of course the stakes are incredibly high. I have only one embryo I’m about to implant. As in, I only have one embryo from two rounds of IVF when the average woman could have three to five embryos after two rounds. I want to do another round of IVF to give this baby a sibling (or if this one does not implant to try again) but I’m not sure my husband will be on board with doing another round of IVF. I know what I want, without question. But he and I seem to be on different pages, with him leaning more towards the idea of fostering.
I am the type of person who likes to have a plan, and right now he does not want to plan anything beyond this current frozen embryo transfer. The fact that he does not want to discuss the future, I think is a coping defense to kind of help him focus on one step at a time. It just so happens that’s the opposite of how I normally function.
Through all of my losses, with the exception of my first, I had a plan in place to help me keep it all together when things didn’t work out. I knew how long to wait after a miscarriage before trying again. I knew the medicine and vitamins I would be on. I would follow my doc’s advice for my next best step. I would hit the ground running, ready to move on instead of wallowing. I always had a plan. But my husband doesn’t want me to plan anything beyond this upcoming frozen embryo transfer.
I tried discussing next steps with him, with an affordable clinic I found (we’re talking one-third the cost). Now that I finally have a diagnosis of MTHFR gene mutation this will also improve my chances of getting the right treatment I need. But after years of TTC and miscarriages I think it’s affected him more than I realized. His way of coping is to not make any plans for the future.
Put yourself in my position dear reader. I’ve had six miscarriages, two egg retrievals, and now I’m about to have an embryo transfer with my only embryo. It is beginning to feel as if this is my one and only shot at having a biological child. And if it does not work out…well I have no idea, because he does not want to talk about the future. Sounds scary right? I literally have no clue what is going to come out of his mouth if this embryo transfer fails. He could say any of the following; 1) let’s foster, 2) lets adopt, 3) how about embryo adoption, 4) we could try another round of IVF, 5) we could live child-free, 6) or what every infertile girl does not want to hear “This isn’t working, I want a divorce.” He’s reassured me in the past he wouldn’t leave me over any of this, but some of us who are infertile may still have this concern in the back of our minds.
Fertility treatments are front and center in our lives right now. I plan my work schedule around it. I’m taking a big pay cut and opting for a more flexible on-call schedule in order to do treatments. For my second egg retrieval I was in Seattle for almost an entire month, which was completely unplanned. Most jobs would not allow for that much wiggle room with their schedule. Instead of planning vacations to tropical places, I’ve had to say “no” time and time again because I would either be doing fertility treatments or I might be pregnant and I refuse to fly while I’m pregnant due to being considered ‘high risk.’ We’ve postponed more than just vacations, but also buying a house. Our life has been put on pause for over four years. I think he’s sick of it.
But with my recent MTHFR gene mutation diagnosis, I found a major missing puzzle piece for my treatment plan. I don’t want to throw my hands up now when I feel like I’m finally making some headway. Not to mention I found a much more affordable clinic. I personally think it would be stupid for me to stop treatment at this point. To completely give up when I have more answers and more resources to help me, well that would be such a waste.
Based on our past conversations, I feel he is ready to move on to fostering. But I’m not ready for that, like at all. I don’t feel I can handle the immense trauma that children in the foster care system have been through. Even if I did decide I was done with fertility treatments, which I am not ready to give up, I feel I would need a long time to grieve that loss before I felt able to handle the immense responsibility of being a foster parent. I’m thinking years before I would even begin to consider it.
I’ve talked with some of my friends who’ve also talked about how they were on two completely different pages with their partners. One of my friends was wanting to adopt, but her husband still wanted to try fertility treatments. None of us really had a clear answer for her, because there is no “right” answer. You always hear the advice to married couples that one of the best things you can do in your marriage is to learn how to compromise. But how do you compromise when it comes to your biological clock? What if you do compromise this and you miss your chance forever. And are you “wrong” for not feeling ready to foster?
From what I’ve heard from others and from what I’ve read from some of the best infertility books, sometimes the “right” choice is the one that resonates most strongly with you. For me, when I’m making tough decisions I imagine myself in the future, lying on my deathbed thinking back on my life and I ask myself this question, “Did I do everything I could to make my dream a reality?” I ask myself this as well when it comes to having a baby. I feel very strongly that I am still in the “fertility treatment” season of my life. I am not quite at the adoption or fostering stage of my life. I know there are some women who do everything all at once; fertility treatments, fostering, and the adoption process. That may work fine for them, but I know myself and I know that would stress me out beyond belief. I know without a doubt that is a recipe for disaster for me.
If this embryo transfer does not work out, I will grant myself permission to drink some boxed wine, eat chocolate, and binge watch reality shows. But soon after that I will get back up again, dust myself off, and get to planning my next step. There’s a Japanese proverb you may have heard of that is simple, yet inspirational for those of us who struggle, “Fall down seven times, stand up eight.” I feel this proverb epitomizes my life right now and I bet a lot of you can also relate. We face so many setbacks and disappointments. But we have to keep moving forward in the direction that feels the best for us.
The title says it all. My suppression check did not go as hoped for and at this point, I really don’t know when I will be traveling for my frozen embryo transfer. Both the ultrasound and blood test were not good. My body is not responding properly to the medication. At this point my body is calling the shots, including what happens next. It all comes down to this weekend. If I don’t respond to the meds within the next few days, my FET could be cancelled.
According to the calendar that my clinic gave me, I should start bleeding 2-5 days after stopping my birth control pill. Well I’m on day 4 and still nothing. I have my suppression check tomorrow and I don’t know what this means if I don’t have any bleeding by then. Does this mean the suppression check will be cancelled? Or can I still proceed? Does this mean my FET timeline will be pushed out further? I decided to email my nurse and ask “What happens if I don’t have any bleeding by tomorrow morning’s suppression check?” Thankfully she responded within the hour and said not to worry, and to continue with the suppression check tomorrow. Phew! I feel better knowing I at least don’t have to make any last minute changes to my suppression check appointment. This appointment is a big deal. It will determine whether my body is responding to the medication and let me know if I have any cysts and that my uterine lining looks okay.
The Suppression Check
I went into my suppression check ultrasound, knowing full well that my body may not be where they want it to be in order to move on with my FET. I’ve learned over these years to hope for the best but prepare for the worst. Well, the ‘worst’ decided to make an appearance at my Suppression Check. The ultrasound tech said everything was looking good so far. It was painful at times as she moved the wand around. Then she asked me, “Do you have endometriosis?” I was kind of surprised by this question because I’ve never been asked this before over my countless number of ultrasound visits over the years. “Not that I’m aware of, no one has ever told me that.”
As if getting a suppression check isn’t stressful enough, do I also need to be concerned that I’ve developed a completely new diagnosis of endometriosis? “I’ve had scarring and needed surgeries in the past, but those were from miscarriages” I told her. I decided not to ask her whether she thought I had endometriosis because I would prefer hearing this from my doctor. In the past I probably would have questioned my ultrasound tech endlessly about everything they see and what they think that meant, but I’ve learned over time that it’s best to let the doctor view the images and disseminate everything for you. Some ultrasound techs are eerily silent and divulge no inklings of anything to you. It’s strange how some of them have complete poker faces. But other ultrasound techs will be very communicative about what they see and what they think might be going on. They always say that the doctor will be the one to make the determination.
According to this ultrasound tech, I did in fact have a big cyst at 18mm. I was told by my clinic’s nurse that if I had a cyst that measured over 10mm I would need to go right away to get same-day blood results for my estrogen levels. Right after my disappointing suppression check ultrasound, I drove to the hospital. The receptionist at my regular OBGYN could not guarantee same-day blood results that my out-of-state fertility clinic needs, so they recommended I go to the hospital’s lab for my blood draw. I had called the previous week and asked the hospital’s lab staff if they were able to provide same-day results and they reassured me they would.
When I got to the hospital they screened me at the front door, due to covid restrictions. They asked me if I had an appointment and I explained that I had a blood draw I needed to do. She redirected me to another building that was several blocks away, because they had recently moved their lab. I had asked several people throughout the other building where the lab was and they did not know for sure. So after meandering around a while I finally found it. Not only was their office full of people (social distancing at least), but also there was a line of people outside the door too.
I had to take a ticket number and wait outside. I didn’t see any staff at the front desk the multiple times I popped my head in as people filed out. I was nervous wondering if they would call the number and not realize that I was outside the office, because I didn’t see any staff calling numbers outside the office. I ended up waiting about an 1.5 hours. Another lady who was a patient came after me asked everyone what their numbers were who were standing outside the office. She was the unofficial leader of us ‘outside the office people’ and would occasionally pop her head in to ask the staff where they were at with the numbers. She must have went right up to the blood draw rooms to ask the staff because the entire time I was there I never saw anyone at the front desk. It was nice that she did this because I was stressing about when they would call me or if my number would be missed. It was so crowded inside I would have been breaking social distancing if I stood inside the office.
Finally a staff member came outside and asked me what my number was and said, “You’re up.” Finally, I thought. I had been standing the whole time, because I wasn’t too keen on sitting on the floor like other people were doing. Mostly because I was too nervous to sit down. I was nervous about what these results would end up being. They said they would fax over my results and my doctor’s office would be in touch with me.
Hours and hours went by, but still no call from my clinic. I emailed my nurse and she said they haven’t faxed the results yet. Then I called the hospital lab and asked them if they faxed it, they said they did. But by the time I messaged my clinic to let them know they should be receiving the fax soon it was already after hours. So much for “same-day” results. I was supposed to get same-day results because it would determine whether I would start my estrace medicine the following morning. I scheduled my ultrasound first thing in the morning to avoid this scenario, but I think because the line was so long at the lab it pushed out the time they were able to get my results. Not to mention the time difference from here to my clinic out of state probably didn’t help matters. My nurse had told me earlier that this might happen and that she would check first thing in the morning for any faxes if it arrived after hours. So for now I have to wait, with no idea what medicine I will be on for tomorrow.
Suppression Check Results
The morning after my suppression check I had just opened my eyes to reach for my phone and check my emails like I usually do each morning. By sheer coincidence that was the exact moment my nurse called me. I almost didn’t pick it up because it said “Unknown Caller” and I’ve had some scam callers recently that I’ve been screening my calls to avoid.
A while back I had a funny interaction with a phone scammer. At that time I was expecting a call back from my doctor, so I knew that my doc’s number might show up as “Unknown Caller.” When my phone rang and I answered weirdly enough the guy on the phone sounded just like my doctor. Here’s how it played out:
“Hi how are you?” He had the same sing-songy greeting just like my doctor normally does.
“I’m doing good. How are my results?” I said.
“Good, well I’m happy to announce you won the Publisher’s Clearing House prize!”
“What?” At this point I was thoroughly confused.
“That’s right you won!” he laughed excitedly, probably thinking he hooked a sucker.
“Oh, I thought you were someone else” I said disappointed.
When I realized he was a scammer I didn’t yell at him or say anything rude, I just kind of sat there with the phone to my ear curious to hear what he would say next, especially considering the fact that I did not enter a Publisher Clearing House sweepstakes. After a long pause he decided to hang up on me. He’s probably thinking, “Who gets disappointed when Publisher’s Clearing House calls?” This girl does apparently.
Anyway, so let’s get back to my early morning phone call from my nurse with my suppression check results. She let me know that my estrogen level was at 130 and that it should be no more than 60-something, I didn’t retain the exact number because I just woke up. She asked if my period started yet. Nope, nadda. She then asked me how I feel about changing my travel plans and I let her know I could probably get a credit on my plane ticket for future travel, since I already had to do this with Kurtis’ ticket. She let me know if I don’t get my period by Monday I may need to adjust my travel plans.
“In the meantime keep taking your Lupron at 10 units and hold off on starting the Estrace. I’ll need to redo your calendar on Monday.” None of these last minute changes took me by surprise. With both of my egg retrievals I had to adjust my schedule because I was a “poor responder” to the medication. I was staying out-of-state near my clinic in Seattle for almost an entire month with my second egg retrieval because my eggs were growing at a painstakingly slow speed. So for my current FET procedure to be delayed, not too surprising for me. One possibility is I will need to cancel this FET and reorder all my medicine, which cost almost $1,000.
Later in the day my nurse messaged me and asked if I could arrange a follow-up suppression check on Monday. I called and scheduled it for their earliest slot in the morning at 8:45am. According to my order from my clinic, if my cyst is still over 10mm I will need to do a blood test for my estrogen level. At least now I have a plan for what to do next.
Part of me wondered if I could eat certain foods or something to get my menstrual cycle to start sooner so I can get rid of this cyst. After Googling this question it’s easy to fall down the rabbit hole of an assortment of old-wives tales on how to jump start a period. Everything from ginger, orange juice, coffee to sex. Why is it that each website has different suggestions for this? Probably because they are just as clueless as the rest of us. I think this is something that is largely out of anyone’s control and people are just grasping at straws for solutions. For now I will pray to the fertility gods for my period, doesn’t that sound confusing? Oddly enough, in my current situation it makes sense.
The Downsides of Fertility Meds
This week sucked, a lot. Although my anxiety has gone down these past few weeks, my irritability is in full swing. I don’t like feeling this way at all. It’s as if someone entirely different has taken my body over and I am just a witness to the emotions that bubble over. I have to get a lid on this. I got irritated with Kurtis over something minor, we were fine the next day after I explained that I thought I was being hormonal. After we patched things up the next day, I joked with him that I feel like I need to be in seclusion in a cabin or something for the remainder of my hormone treatments. He thought that was funny. I said it half jokingly but also half serious because I’m sure I’m not a joy to be living with at the moment.
On top of feeling irritable, I was in bed most of the day yesterday with a horrible migraine and feeling super nauseous. Although I was on this same medication for my egg retrievals in the past, it seems like this is affecting me more this time. Maybe I’m on a higher dosage or something, I can’t remember my past dosage. I decided to Google “Lupron side effects” and learned that Lupron is also used as chemotherapy. Wow, that explains why I feel like I want to puke 90% of the day. In hindsight I think I vaguely remember talking with my insurance company years ago about whether they cover the drug. They asked me if I was going to be taking it for oncological reasons or for infertility. I don’t think I understood the term oncological at the time, so I simply answered “for infertility.”
I had a sarcastic thought earlier today in regards to fertility treatments. If I were to write a Yelp review about it, the title would be “Would Not Recommend to Friends.” I know I would be saying the exact opposite if this works out and we finally have our precious little baby, but the process of getting to the baby really, truly sucks. It sucks emotionally, physically, and financially. Without a doubt it takes a toll on relationships. Both my husband and I have been through a lot, and I mean a lot, with this journey to have a baby.
Occasionally I will watch YouTube videos of other couples, sharing their infertility journey. Sometimes the ones that are overly enthusiastic and endlessly happy leave me scratching my head. Are they new to this or something? Because no one in those videos seem to be talking about the strain this puts on their relationship. It’s not all rainbows and sunshine, come on now. Kurtis mentioned to me in the past that maybe those couples are doing that for the camera, and not talking about how they really feel to the world or even to each other. I tend to see more authenticity from other infertility bloggers compared to YouTube. Every once in a while I’ll come across a YouTuber who is telling it like it is. I always appreciate hearing their stories.
Found a creek on our recent hike near South Bivouac trail in Anchorage.
The way I physically feel right now has me questioning whether I will have the strength to do this again in the future. This process is not for the faint of heart. There’s a chance this FET will not work out. It could be a cancelled FET cycle (due to body not responding to meds), or implantation failure, or miscarriage. I need to be realistic, and mentally prepare myself for those possibilities and understand that I absolutely must take care of myself if it doesn’t work out. If this happens, I will grieve the loss and really focus on ways to build myself up and heal. Self-care would be so important then, like taking a nap, reading, listening to calming music, going for a walk, and talking to those in my local infertility group. I don’t see it as a negative thing to think of that possibility, I see it as planning ahead to take care of myself.
I would be shocked if this FET works and I become pregnant. I would be even more shocked if I made it to having a live-birth. That would be so surreal and incredibly amazing. The odds are certainly stacked against me, but at least I will know that I did everything I could. All I can do for now is just wait to hear back from my nurse on Monday on what my newly adjusted medication calendar will look like. Then I’ll need to change my flight and hotel dates around most likely. One step at a time is all anyone can do when they face obstacles.
“Guess what? I started my injections!” I said beaming with a smile. My friend laughed and said, “I’ve never seen anyone as excited as you are for shots.” I just laughed too, it really is an odd thing to say about how you are excited for shots. Most people dread shots and here I am saying bring it on! These shots are to help prepare my uterine lining so my frozen embryo has an increased chance of implanting.
I think these injections have brought more excitement than my first two egg retrievals, because this time I know there is an actual embryo waiting for me. The egg retrievals were all about pumping me up with hormones to get some good eggs. Eggs were the outcome. But this time a baby is the outcome. I’d say right now my hopes are really high, and I am trying to stay optimistic.
I finished up my birth control near the end of the week along with doing the Lupron injections. This is the third time I’ve done Lupron injections, so I feel like I’m an old hand at this. It’s only a little painful if you do it right. It’s such a small and thin needle so it’s not a big deal. I’ve been injecting myself, no assistance needed from hubby here. I may need his help with the PIO shots later on since those are at a weird angle and in the upper butt. Maybe I’ll try to learn how to do those ones on my own.
Approved for Lovenox
I got a phone call back from my doctor regarding whether I should be on Lovenox during my pregnancy. I’ve heard of many success cases of women with the MTHFR gene mutation who were finally able to carry a baby to full-term, with the addition of Lovenox during pregnancy. My doctor acknowledged the fact that the use of this medicine is controversial, mostly due to there not being enough studies on its use in pregnancy for those with the MTHFR gene mutation. He also mentioned that if it helps the mother during pregnancy there is no significant increase in birth rates. He said, “I cannot guarantee that this will help. It’s hard to say.” In a nutshell, he let me know that it won’t cause any harm, but it may not improve my situation by much. I told him, “Even if it may only slightly increase my chance of a baby, I’d like to try it.” And with that he agreed to let me try it.
He told me that I would start taking Lovenox with my first positive pregnancy test, and that my OB would take it from there as far as how long I should be on it. I am excited to try this out and see if this makes any difference. Who knows maybe this will finally be the time that I am able to carry to term. But first things first, this little embryo needs to implant.
Visited Mom this week and spotted this butterfly near her house.
New Vitamins to Reduce Anxiety
In my last post I wrote about how I thought my recent high anxiety might be due to my methylfolate supplement, which for some people does increase anxiety. I re-read the section of “It Starts with the Egg” about the MTHFR gene mutation and how one way people deal with the increased anxiety from the supplement is to balance it out with B12 vitamins. I also added in B6 as it suggests in the book. I wouldn’t say I’m completely rid of my anxiety, but I’m definitely feeling a lot better than I was.
All of my vitamins for FET Prep.
I’m still a little jumpy if I hear loud noises, but I’ll take a little jumpiness any day over what I was feeling before. I was feeling such an enormous amount of dread for the majority of the day, it was awful. Any minor fear was amplified ten times over. Thankfully, I am seeing a positive difference with feeling more at ease lately.
I’ve also temporarily increased my vitamin D dosage, as recommended in the book. I decided to do the two weeks of 10,000 IU. I’ll be wrapping up with the two weeks here shortly then I will drop down to what I was taking before at 5,000 IU of vitamin D.
All of my vitamins lined up. I don’t always take that many L-Arginine though.
I’ve also added in some L-Arginine, but not as much as what is recommended in the book. I’ve learned that L-Arginine can reduce egg quality for a little bit, but help a fair amount with an embryo transfer. Because I am about to do an embryo transfer I decided to take the middle road. A did some digging in the Facebook “It Starts with the Egg” reader group and saw that Rebecca Fett (the author) responded to someone’s question. I can’t remember the question verbatim but it essentially asked, “I have low AMH and am about to do an embryo transfer. If this transfer does not work I want to do another egg retrieval in the future. I am concerned about L-Arginine and how it may make egg quality worse. Should I take less L-Arginine for this embryo transfer or avoid it completely?” Again I don’t remember the exact wording, but I do remember the number that Rebecca Fett suggested to her, “Try 2000mg instead of the full 6g.” For the dosage of pills I have on hand, that equates to only 6 pills per day, as opposed to what she recommends for most others which would be 12 pills. I may take a little more than that, seeing as how this is my only embryo I have. I think as long as I am within the range of 6-12 pills I will be okay with that.
Organized all my vitamins in three different recycled bottles. Makes it easy to grab and go.
When you have infertility, fertility treatments are a gamble. You have no idea what your outcome will be, and neither does your medical team. They can make predictions and might be able to turn the tide a certain way somewhat, by adjusting your handful of medication dosages up or down. But ultimately the outcome is really unknown until it’s all done and over with and you are looking at the answer in your hands with a pregnancy test. In exactly 48 days I will know whether I am pregnant or not. That’s as long as no wrenches are thrown into the plan, and we all know how wrenches love to fly into my plans. I just need to be like Neo in the Matrix and slow-mo bend out of the way.
At the beginning of the week I had really bad cramps, to the point where I was crying in pain. This is unusual for me. Most of my life my cramps during my cycle were mild, compared to how my friends described theirs. If I could count the number of times my menstrual cramps were severe in my life it would only amount to what I could count on one hand. So this out-of-nowhere awful as hell cramping threw me for a loop. About a day or so afterwards I had started my period. Wait…what!? I thought I wasn’t supposed to be getting my period at all while I was taking these birth control pills to down regulate me. I had heard there may be some spotting, but nope, this was definitely Aunt Flo.
At first I thought my body was just being a rebel and randomly starting my period. But when I looked at my Ovia app, where you can track your period, it turns out my body was almost right on time when my natural cycle would have started. I’m concerned my body is not responding the way it should to the birth control.If my body isn’t doing what the doctors are trying to get it to do, there’s a chance they will cancel my embryo transfer.
Part of me wanted to email my nurse and ask her, “What does it MEAN? Will my embryo transfer get cancelled now?” But I decided to let this one go. I’ve already asked my poor nurse a question about every other day. And when I thought about it, there’s nothing they can really do anyway, it’s not like they can increase the birth control. According to my calendar my nurse made for me I should start my period several days after I stop my pills, which is scheduled to happen here in a few days. Best case scenario is I will have two periods in one month, which is such a weird thing to hope for. But in my situation that’s looking like what needs to happen.
It all comes down to the suppression check. It’s at that time I will get a for sure ‘yes or no’ on whether my body is doing what it needs to do. If you don’t know what a suppression check is, it’s an ultrasound where they look at your uterine lining, and whether you have any follicles or cysts. In the past I dealt with cysts that threw off my egg retrieval schedule. If they find a cyst over a certain size they may ask you to do a blood test to see the cyst is functioning or non-functioning. If you have a functioning cyst this can interfere with how your body reacts to the medicine they give you. But if you have a non-functioning cyst some doctors will proceed as normal with your medications and your timeline won’t be affected. I’ve even had some friends where their cyst did not go away and they ended up needing surgery. Everyone is different.
Photo from one of my previous ultrasounds, before my egg retrieval.
I’m looking at my orders from my clinic for my sonographer, and it says if I have a cyst over 10mm the sonographer needs to let me know, so I can get a STAT order of my estradiol blood levels sent to my clinic. I called my OBGYN’s office and they could not guarantee same-day results. My clinic in Seattle recommended I do it at the hospital’s main lab. I confirmed with the hospital they are able to do same-day estradiol lab results.
I’m hoping all goes well with my suppression check on June 10th. I’ve always imagined the suppression check as the starting line of a race. I hope nothing gets in my way because I am so ready to get started! At the same time there’s the pragmatic part of my mind that is trying to temper my excitement, it says, “Girl, you’ve had cysts in the past and your timeline has been thrown off several times. You know nothing goes according to plan with your body.” True, true, and true again. Damn it brain. At best my schedule will not be thrown off, at worst it will drag on. Time will tell.
To Lovenox, or Not to Lovenox, that is the question.
I was checking out some infertility forums, which I haven’t done for a while. One lady said that she also has the MTHFR gene mutation and has had four miscarriages. She said once she was put on a combination of baby aspirin, methylfolate, and Lovenox. She said she was finally able to finally carry a baby to full-term and had a healthy baby girl. I’ve heard this same story over and over again with other women with the MTHFR gene mutation who have been put on those medications and were able to have a baby. From what I understand, if you have a MTHFR gene mutation you have a difficult time processing folate and therefore are not getting enough nutrients. If you are not getting enough nutrients the odds of having good hormone levels and healthy, happy follicles in the ovaries, well these odds are not so great.
The science behind MTHFR gene mutations and its effect on fertility is still somewhat new. But I am ready and willing to see if treating my MTHFR gene mutation might have a positive effect on my fertility. I am a guinea pig for science, by choice. The studies of this gene mutation are still so new that most doctors are not implementing changes to treatment. In my case most of my doctor didn’t even know what I was talking about at first. Needless to say it’s a strange experience having to tell your doctor why you think you might be having recurrent miscarriages, because they are at a complete loss of what to do. But I am not at a loss, I still have hope. And for the first time ever, I might have the medicine I need to get on the right path for not miscarrying.
I’ve mentioned my MTHFR to my clinic in the past, asking what vitamins they would recommend. But I didn’t think to ask about prescription medication at the time, because I didn’t realize there was one. I feel like they gave me a cookie-cutter answer and said, “A prenatal and eat a healthy diet.” Yeah…but…most prenatals have folic acid which is the exact opposite of what I need for my gene mutation. I need a prenatal with methyl folate. Even I knew that, but they didn’t tell me this. It makes me wonder how many other patients with MTHFR they are telling to do this and are having poor results. They didn’t even suggest baby aspirin, which is a go-to recommendation for it. I wish they had more knowledge and specialized treatment for patients with MTHFR at my clinic, because I feel like I may be missing out on the best treatment possible.
So the other day I posed another question to my clinic:
“Since I was diagnosed with the MTHFR gene mutation a while back I had heard that some women with this take Lovenox during pregnancy. I asked Dr. X (my OBGYN) a while ago whether I should take Lovenox he said I should ask your clinic. Given my six miscarriages and my MTHFR gene mutation, does Dr. Y think I should try Lovenox possibly? Could this help prevent miscarrying if I do get pregnant? If so, when should I start taking Lovenox if it is recommended? I’m willing to try it, even if it only slightly increases my odds of a successful pregnancy. Thank you.”
I’ll see what they say, but given their reservations for anything beyond a prenatal, it’s looking doubtful they’ll want me on Lovenox . I’ve heard some women online who are adamant that they were finally able to have a baby after repeated miscarriages and they feel this is mostly owed to being on Lovenox during their pregnancy to keep from miscarrying. I’m not sure what I will do if they tell me ‘no.’ If they say no and they have a really solid explanation as to why, I think I will consider this. But if they say no and not really back it up with an explanation, I feel like I would need to get a second opinion.
Where I will get that second opinion, I’m not sure. We have a grand total of zero reproductive endocrinologists in Alaska, since mine retired over a year ago. My OBGYN has told me that he does not specialize in this area and was not sure. I think what I might do is if my Seattle clinic says no to Lovenox, then I will ask another doctor’s office. Time is of the essence, I have about one month left to decide whether to get on Lovenox and to figure out which doctor will prescribe it to me.
It may seem like I’m trying to circumvent my fertility clinic’s recommendations, but can you blame me? I have had six miscarriages, two rounds of IVF and only one embryo. The stakes are high, and I am fed up. Conservative treatment plans are out the window at this point. Done. D-O-N-E! I am now into the ‘by whatever means necessary’ phase. If I need to try alternative treatments like dangle upside-down by my feet while getting hit by a bundle of plants while chanting positive affirmations I will do it (and yes, this is totally a thing). Because, why the hell not? Everything else I’ve done hasn’t worked. I think it’s time to put the pedal to the metal and think out of the box.
So what does a more realistic out-of-the-box treatment plan look like? In the future I plan on doing treatment with CNY. I’ve heard they incorporate both western and eastern methods to improve infertility. They seem to take a more holistic approach. Their office seems to be focused on Keto which is definitely different from what my current clinic is saying. Different is looking pretty good at this point, because doing the same thing over and over again is the definition of insanity. If I am lucky enough for my upcoming embryo transfer to work in July, I am hoping to give this baby a sibling with the help of CNY in the future.
High Anxiety from Methylfolate
Methylfolate is great for those with the MTHFR gene mutation and who are pregnant or trying to conceive. But this amazing supplement is not without its downsides. I re-read “It Starts with the Egg” by Rebecca Fett as a refresher for this embryo transfer. There is a section on methylfolate and how she recommends further reading in the book “Dirty Genes” by Ben Lynch (also a good book). I’m glad I took the time to go over this section again because it helped me to have an epiphany. I thought my recent high anxiety was due to my birth control, but it was reaching very very high levels, beyond what it normally was in the past. Part of me chalked this anxiety up to COVID and worrying about traveling during COVID for my embryo transfer.
But even when I wasn’t thinking about COVID, or my FET, or thinking about anything really, I felt like I was having incredibly high amounts of anxiety for no reason. I’d describe this feeling as if you drank six cups of coffee, you feel your heart pounding non-stop and you are insanely edgy. There’s been more fighter jets flying over my house lately in the morning. “They are going to crash into the house! I just know it!” my mind shouts out to me. Just imagine every plane that flies over is going to crash into you. Then the trains that go by your house are going to derail. The person you hear walking outside on the sidewalk is surely going to break into your house (granted we did have a breakin last week at my neighbors). Every minor fear has been way blown out of proportion with this insanely high amount of anxiety I’m feeling. It was a consistent high anxiety over these past couple weeks.
But in “It Starts with the Egg” it mentions that some people with the MTHFR gene mutation who take methylfolate can have the side effect of high anxiety. Then I looked at minimum dosage recommendation for the supplement 5-MTHF (methylfolate) before embryo transfer, which was 800-1000mcg. Then I converted the dose I was taking from milligrams into micrograms. Oh snap! I’m taking five times the recommended minimum dose, no wonder I am stressed the f**k out over little things. I tend to be more sensitive with medications anyway. Although there is a wide range of dosages that are perfectly acceptable to take, I am realizing that I should probably stick to the lower end. In some cases people can take up to 15,000mcg. So it really varies and you need to adjust your dosage specific to your needs. On a lighter note, before I had this epiphany, Kurtis got some amusement out of the situation by making TikTok videos where he scares the crap out of me.
Taking 5-MTHF and baby asprin, often recommended for those with MTHFR gene mutations who are trying to conceive.
I also read in the book that taking B12 in addition to 5-MTHF can help reduce anxiety. If I don’t see much difference taking the B12 along with it, I’m probably going to cut my 5-MTHF pills in half. I don’t want to waste those pills. My doctor said it was okay to take the 5mg (5000mcg) dose and recommended it, but at a minimum I need at least 1mg (1000mcg). So if I’m still super edgy I will drop down to the minimum 1mg.
Mini Victories for the Week
Bought vitamins I was out of.
Re-read “It Starts with the Egg” which helped me to realize my one supplement may have been the culprit to my high anxiety.
Work in Progress
Reduce anxiety, most likely due to high dosage of methylfolate. Trying B12 to counteract it, but may need to reduce the dose of methylfolate.
Advocated for myself by asking my doctor about Lovenox, waiting to hear back his response.
Last week I was so happy to finalize our plans to fly to Seattle for our frozen embryo transfer. But what I didn’t think about until after everything was booked was whether Kurtis could be in the procedure room with me. I was just so excited to have the date set that I didn’t think about the possible COVID restrictions. After reviewing a letter my clinic sent out to everyone, I realized one part of the letter did in fact state that partners were not allowed in the procedure room. I verified this with my nurse as well and she said they were still following those restrictions. This week I had to make some changes to my travel plans because of that.
I don’t know how I didn’t factor in COVID restrictions into our travel plans as far as the clinic rules. I unfortunately assumed the only thing we would need to do is to wear our masks, gloves, and social distance from medical staff. But what I didn’t consider is that Kurtis might not be able to join me at all for my FET procedure because of the clinic’s COVID rules. But sure enough I double checked a letter they had sent and within the letter there it was. My nurse let me know that he wouldn’t be able to join me. I wish I would have thought of that before I booked our flight.
I found this out the day after we had to pay our taxes. No tax refund for us, just thousands of dollars we had to pay. Because of that and the fact that he isn’t allowed in the room he decided he financially cannot afford to come down with me for the procedure. It was really disappointing to say the least. I called the airline to try to get a refund on his ticket but they would not refund it. They did allow me to get a credit for future travel as long as it’s booked within one year. So I agreed to the credit, that way I at least have that option of using it if I decide to do another round of IVF in the future.
Taking some shots…
…of vitamins. 🙂
If I had known he could not be there I would have scheduled my FET one week sooner, which was their earliest time, but I planned it around his time off. One week later isn’t that big a deal in the grand scheme of things, because my little embryo has been waiting almost two years to be transferred. I postponed my FET when I found out my mom had cancer so I could help her. When she recovered from her cancer I had my own cancer scare. I got pregnant naturally and it resulted in a miscarriage, which lead to complications that left me susceptible to gestational trophoblastic disease, which could lead to cancer. So my doctor told me to postpone my treatment for six months to prevent uterine cancer from developing. I needed a total of three surgeries over those six months because they were finding masses in my uterine lining and had to clear it. Thankfully they were only remaining products of conception that they had not completely cleared from my last miscarriage, and not a tumor.
When I finally passed that six month window of “no baby making whatsoever” that my doctor prescribed, I was ready to get started on treatment again. I made all the plans then COVID changed the world and my clinic shut down temporarily. So when I say that this little embryo has been waiting a while to get transferred, it has been a long while. I am so ready to do this transfer, even if I have to do it alone. I have no choice right now other than to do it alone.
I’ve done solo travel multiple times across the world, no big deal. In fact I preferred traveling on my own sometimes. But when you pump a girl full of hormones that make her weepy and then you expect her to do one of the biggest events of her life alone with no support, it’s a recipe for even more hormonal emotions. It’s only two days that I’ll be gone. But it’s a really special and sensitive time in my life. I feel like this is the time I need the most support, but I’ve got to figure out how to emotionally handle this on my own.
I’ll get over this initial disappointment. I think the biggest thing I want to avoid is sitting in my dark hotel room staring up at the ceiling and crying by myself. Yeah that’s no fun for anyone. So I need to keep my mind occupied while I’m down there. I don’t plan on going anywhere but my clinic because I don’t want to risk exposure to COVID. I can get food delivered to my room so I don’t have to go out. Maybe I’ll work on my writing, listen to audiobooks, watch TV, or be amused by the goofy TikTok videos. I want to try to make it as stress free as possible so I can increase my odds of my embryo implanting. Now I need to keep my mind occupied until my transfer, because right now that’s all I can think about.
Confusing Med Instructions
When I did my egg retrieval in the past there were some confusing instructions regarding the dosage of one of my meds. I can’t recall at the moment which medicine it was at the time, but I had a moment of deja vu again, but now it is with my progesterone shots that have me really scratching my head.
My instructions say to inject a dose of 50mg. Easy, right? Well when you look at the syringe it is in milliliters and not milligrams. Instead of relying on an internet source to help me convert, I decided to get clarification directly from my nurse. If you look at the pictures you can see how someone might get confused. She let me know I need 1cc and then later sent another message that 1cc is equal to 1ml. So in the end 50mg = 1 cc = 1ml.
Mini Victories for the Week
Got a lot of cleaning done around the house earlier the other day, which helped me get off my booty and exercise more. Buring calories!
Asked my nurse some questions about my medicine that wasn’t clear with the paperwork.
Work in Progress
Review FET part of “It Starts with the Egg” by Rebecca Fett.
Order more of my non-toxic, fertility-friendly soap, shampoo, and toothpaste. All low on them since I had to postpone my treatment.