Infertility Update + What I’ve Learned So Far
Hi Guys! I want to give you an update on my infertility journey because I feel like so much has happened since my last update. I’m just going to dive in and I’ll try to start where I left off, which was in March 2019. I had just done 2 IUI’s (Intrauterine Inseminations), which are medicated so I was doing hormonal injections, the trigger shot, etc. and obviously they didn’t work. So we decided to take a break and not only just try naturally but honestly just stop “trying.”
It is now July 2019 and I’ve gotten a lot of questions from you girls about why we stopped trying and why we didn’t go through more IUIs. I think that the best way to summarize it is just to say that it was too hard (mostly on Luca, honestly!). We were so overwhelmed and stressed and exhausted, both mentally and emotionally, and Luca was having a hard time seeing me go through everything, including injections. So we decided to take a break from it all. And, I’m not going to lie, we were hoping that the “as soon as you stop trying, it will happen” phrase would be true for us but unfortunately it wasn’t.
This entire process is one big life experience. I’ve never been afraid of struggles in life. Not to say that I welcome this struggle, but I think that most things happen for a reason. We don’t know the reason yet but we have faith that we will find out someday!
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I will say that, while we are not pregnant, there’s been a lot that I’ve learned in these last 4 months. I want to use this blog to touch on some of these topics because I think it’s important to share what I have learned with anyone else who is currently, or has the potential to be, in a similar situation.
In the last blog, I shared that I had stopped taking Synthroid, my thyroid medication, and a LOT of you were not happy about that. And I understand why! But I want you to know that this was purely a mini-experiment for myself because I wanted to know whether I truly needed the medication. I also want to point out that I do not have very extreme thyroid symptoms, I never have, so I knew that going off of it for a bit wouldn’t be dangerous. So I stopped taking it for one month, I got my thyroid tested, and it turns out that I do really need it. My thyroid levels came back at a 4.3 which is really high (with the medication, my levels are at a 1.5 and they should be under 2.5 for a pregnancy). So I went back on Synthroid and my levels went back down to normal. I do also want to point out that I went through more thorough thyroid testing to rule out Hashimoto’s or Graves, two autoimmune disorders that occur when the immune system attacks the thyroid gland, and I don’t have either.
A few other things that I’ve been told to do over these last few months are to increase my Vitamin D and take DHEA. For Vitamin D, I was taking 1,000 units and they told me to increase it to 5,000 units! (Vitamin D is important for fertility but please note that these specific amounts are based on MY bloodwork results.) I am also taking 600 mg of Ubiquinol (recommended instead of CoQ10).
I was also told to take 25mg of DHEA 3 times a day (please get doctor’s approval before taking) which I started off by only taking once per day. But that cycle I got my period after 14 days (a normal cycle should be 28 days). There’s nothing more frustrating than getting your period, never mind an early period, if you’re trying to conceive. So after 14 days, I called my doctor and they told me to stop taking it immediately. It’s important to note that this doesn’t mean people shouldn’t take DHEA because there absolutely are cases where you need it. However, my case was one where we learned the hard way that I didn’t need it.
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This brings me to a really big disclaimer: there are NO supplements that I would suggest as a blanket recommendation for everyone because it really depends on your levels. PLEASE get your blood taken to see where your levels are before you take any supplements for fertility. Too much of a certain supplement can be harmful to your fertility and to an unborn child.
Another interesting recommendation my doctor had was to eat a gluten-free and dairy-free diet (IF in the United States…). I don’t have celiacs disease, I’m not gluten intolerant, and I’m not dairy intolerant either. I don’t really have adverse side effects from either of those things. I’ve shared on insta stories before about how my doctor has said that when I go to Italy or when I go to Europe, I don’t need to eat gluten-free and dairy-free – ONLY in the United States.
I’ve had a few conversations with you all via DM about why this is the case, and some of you have experienced it firsthand. I got so many DMs from you girls who have gone to Europe and say, “I have a gluten intolerance or dairy intolerance and I can eat it over there.” This is a whole other beast to talk about so I’m not going to go into a lot of details but really it comes down to how our food is farmed here. So since I live in the United States, I was told that I should be eating gluten-free and dairy-free. They did say, though, that gluten-free was more important than dairy-free and I pretty much eat gluten and dairy-free anyway. The only dairy I eat is greek yogurt and some cheeses here and there, but I did start cutting that out. I also really don’t eat gluten but I started being more proactive about checking labels and ensuring that what I was eating was gluten-free.
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Now let’s talk about the month that I decided to get my progesterone levels tested. For those of you who haven’t read my previous blogs, there are 3 main parts of your cycle: you get your period, then you ovulate, then you get your period again. From the time you get your period to when you ovulate is called the Follicular Phase, which is when estrogen rises. Then the time between when you ovulate to when you get your period again is called the Luteal Phase and that’s when progesterone, a hormone required to sustain a pregnancy, rises.
Throughout this process, I have suspected that I have low progesterone. One indication that you have low progesterone is if you get your period early, meaning you have a short luteal phase (a luteal phase should normally be about 12-14 days so 10 days or less is typically considered short). There’s also something called a “luteal phase defect,” which can cause infertility and early miscarriages. Ever since I got off birth control, I’ve had a short luteal phase. I always thought that I might have low progesterone but my doctors never tested it. It was only after months and months of me saying, “I really feel like I have low progesterone” that I decided to ask for it to be tested.
The testing is done at 7 DPO (days post ovulation) or around day 21 in your cycle. However, the 7 DPO is more important because you might ovulate on day 10 and then 7 days after ovulation would be day 17 of your cycle. This is why tracking ovulation is such a necessity! Something I do want to point out is that low progesterone is usually related to stress, among a variety of other things. Stress has always been something that I’ve thought might be a contributing factor to my infertility. I don’t think that it is THE cause but it definitely could be a small piece of the puzzle.
The first month I had my progesterone tested, I was already taking 200mg of progesterone supplements once a day. At 7 DPO, my level came back at 8.5, which is low – it’s supposed to be about 15 in order to sustain a pregnancy. So the next month I doubled my dose and took 200mg TWICE a day, one in the morning and one in the evening. That month my level at 7 DPO was 7.9…it was LOWER than the month when I was taking a lower dose! I was so frustrated and thought, “What is going on?? Why do I have such low progesterone? Why are these supplements not working?” I felt like I was at a loss. So I called my doctor and she said that my body is not absorbing the progesterone supplements for whatever reason and told me that during IVF, I would get progesterone injections and my body would be able to absorb it a lot better.
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A part of me wonders, “Why do I need to do IVF to get those injections? Why can’t I just do those injections while trying naturally?” I genuinely don’t know the answer to that question. I’m kind of kicking myself for not testing my progesterone earlier because it’s a suspicion that I’ve had for so long. And I’m not going to lie, there’s a bit of frustration about why no doctor told me to test my progesterone right away. It is such an important hormone to sustain a pregnancy, so why is that not a default test? Again, I don’t have the answers, I’m just being really honest about a regret and frustration that I have. So for any of you going through this journey, get your progesterone levels tested and talk to your doctor about it.
This is also something I’ve learned through this journey: you have to be your own biggest advocate. I will never ever discount all the hard work that doctors have to do but that doesn’t mean some things don’t slip through the cracks. Sometimes not every single box gets checked off. It’s not their fault but at the end of the day, it’s on us – it’s on you to take control of your body, of your situation, and of your life. You have to check off all of those boxes and be aggressive and ask questions and take notes. I have a spreadsheet, you guys! It has all of the dates that I got my bloodwork done, all of the levels, and all of my history. That way I can keep it all in one place because there are SO many tests that you go through on a journey like this. I highly recommend creating a spreadsheet in something like Google Sheets so that you can access it from anywhere.
Now I want to move onto the second really big discovery that I made during this process. I’m in a few fertility-related groups on Facebook and I was reading posts from girls who were saying, “Get this tested – your doctor will not bring it up” or “My doctor said ‘no’ to this test and I pushed back and I got it tested and it came back positive.” And the test was about the MTHFR gene mutation. I know it’s a really long acronym but essentially MTHFR is a gene mutation that prevents your body from being able to convert folic acid to folate. Folic acid is in the majority of prenatal vitamins and is really important for pregnancy and for a baby’s health. But if you have MTHFR, your body’s ability to convert folic acid into folate is weak. And for those of you that don’t know (I didn’t know until a few months ago!), folic acid is the synthetic version of folate. So basically folate is like nature’s true version (what’s found in things like spinach) and folic acid is the synthesized man-made version. For some people that have MTHFR (and they estimate that about 40% of women have it), they cannot break down folic acid or convert it into folate and it gets stored in their body as a toxin.
I highly recommend doing a quick Google search if you’re wanting to learn more – it is a LOT of information and a lot to process (I’m still processing it myself!). All I know for sure is that I have the A1298C and I am heterozygous. This is also the least serious version of all, so that was a huge relief.
As I mentioned, that means that I cannot process folic acid and that I need folate. That means I’m supposed to avoid folic acid at all costs. Can you imagine being told that when everything we hear is “folic acid, folic acid, that’s what you need for a healthy pregnancy and a healthy baby!” And now it’s like, “Avoid it at ALL COSTS.” I had to go through my prenatal vitamins, all of my supplements, and even look at my diet because some foods have folic acid. It is also important to note that “folic acid” and “folate” are unfortunately used interchangeably, but there IS a difference. I need to have folate or Methylfolate instead, which is the active and natural form of folate (AKA Vitamin B9).
Another thing about MTHFR is that it also impacts your blood, causing it to clot more than normal. A lot of women that have MTHFR have to take a baby aspirin every day to thin out their blood a bit, especially since proper blood flow to the uterus is incredibly important for successful implantation, fertilization, and pregnancy. However, this is only if you have elevated homocysteine levels. If you don’t, then this doesn’t apply (again, please get your levels checked before implementing any supplements/changes into your routine :)).
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Needless to say, this was all a really big revelation. It also seems to be a very controversial topic in the fertility and medical community. Some doctors argue that it is absolutely irrelevant and makes zero impact. Others say that it absolutely makes an impact. I feel like that’s the world we live in today, even in the medical community – there are a lot of things some people are completely for and others are adamantly against. As I said, at the end of the day, you just have to educate and inform yourself and make the best decision for YOU. My doctor said that she does not believe that it impacts my ability to conceive but, once I’m pregnant, it is important to know. So there’s that! Due to the MTHFR diagnosis, I am now taking a baby aspirin every day and I’m no longer having anything with folic acid, only folate.
I want to mention another thing related to this topic that I’ve kind of been kicking myself for not doing. A few months back, one of you girls who is a nurse DM’d me about doing a heavy metal detox. It was something that I thought was interesting and I really wanted to do but life is busy and I just never got around to it. Now, after finding out about my MTHFR diagnosis and the fact that folic acid gets stored as a toxin in my body (not to mention all the other toxins that we have in our body from all the products that we use and the chemicals that are in everyday life!), I’m really kicking myself for not doing that heavy metal detox. But…shoulda, woulda, coulda! I’m not mad at myself but I’m not going to lie, there is a little part of me that thinks, “What if?” What if I had done that heavy metal detox, would that have been the game-changer?
There’s one last thing that happened a few weeks ago that almost completely derailed our plans after we decided to proceed with doing IVF next month. After we made that decision, we were just waiting until I get my period so that we could start scheduling injections. I was in Boston visiting my cousin just before I went to Pop Sugar Playground in New York City and got to meet so many of you!
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During that weekend before the event, my cousin told me about an herbal doctor in Boston who had helped SO many women conceive and since I was there, I figured, “Why not?” I absolutely believe in having a balance of eastern and western medicine. I still do acupuncture every single week when I’m home. So I went to see this doctor, who was probably in his late 70s, and he asked me a ton of questions and then gave me this herbal tea to drink. You guys, I wish I could have filmed this – there was an entire wall of herbs and he was just mixing them all together! He WAS measuring them, though, so that made me feel a little bit more like there was a method to his madness. But the bomb that he dropped on me after I told him we were going to be doing IVF next month was: “Don’t do it yet. Drink the tea two times a day for 3 months. Try naturally for another 2 months. And then if you haven’t conceived, do IVF.”
I don’t think I’ve ever been more conflicted in my life. I truly want to give trying naturally every possible chance out there. I can also see that tea being similar to a heavy metal detox, so there was one side of me that was like, “If this is what does it and saves us from all of the pain, the mental and emotional drain, the physical side effects that come with IVF, not to MENTION the cost, why not try it?” And Luca and I really struggled with this decision for about 2 weeks. And ultimately we decided that we can’t do 5 more months of the “two-week wait” (after ovulation when you’ve done all you can to get pregnant and you just have to wait for 2 weeks to see whether you get your period or not to find out if you conceived).
Those 2 weeks KILL me. It’s like my entire world revolves around waiting to know if we conceived or not. There have been some months where I’ve been somewhat successful in distracting myself and for those of you who have been through it, you know how hard it is. I just can’t do 5 more of those. It’s been 19 months now that we’ve been trying to conceive. I can’t do 5 more. I know that I’m young and I know that I have time and that we don’t need to be in a rush. I’m just kind of tapped out.
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We decided that we are starting IVF this month. Today is July 9, 2019. Pretty much as soon as I got my period they put me on birth control. They do this to control your cycle so that they know exactly when you’re going to get your period because injections start a few days later. I’ll do injections for about 10-12 days and I’ll have my egg retrieval shortly after that. And then you have to wait.
We’re doing a frozen cycle (you can do fresh or frozen) because frozen statistically has a higher chance of success. We’re planning to wait 1-2 months to actually do the transfer so it’s not going to be until the fall before we know anything. Even though it’s a big waiting game, I feel like it’s not going to be as intense as a normal two-week wait, or at least 5 months of a two-week wait.
I genuinely am excited. I feel like this is just a huge step in the direction that we have been trying to go in for 19 months. I know it’s not going to be easy, I know it’s going to be physically, mentally, and emotionally hard on me. But I am up for the challenge!
And that’s the update! As I mentioned earlier, you HAVE to be in charge of your own situation – blood work, asking questions, keeping track of things. This is not an easy process so my heart goes out to any of you, whether you’ve been through this process before or currently are. Thank you guys so much for all of your love and support. It really helps to know that I’m not alone.
If you have any questions about anything I mentioned in this blog, or are going through this journey yourself and want to share your story, feel free to leave a comment below.