HSG Test Results | Karyotype Test | More Surgeries, One for Something More Serious

HSG Test Results | Karyotype Test | More Surgeries, One for Something More Serious

I wanted to take a break from IVF for a little bit, maybe six months or so. But I still wanted this time to be somewhat productive, so I decided now would be a good time to look into getting a new OBGYN and ask about any testing that I may not have done yet. As it turns out there were several tests missing. I am now seeing two OBGYNs, and still deciding which one I want to see regularly. I am also seeing a specialist for something more serious than my fertility, that will affect when I’ll be able to do my next IVF cycle.

 

 

HSG Test Results

From what I hear the HSG test (Hysterosalpingogram) is one of the more routine tests done on women who have recurrent pregnancy loss (RPL) or unexplained infertility. One of the new doctors I am seeing suggested I do an HSG test because there is no record of me doing this test. When she described the test to see if I remember doing it, it did not sound familiar. I told her that I’ve done SIS tests, but I’ve never done an HSG test. 

 

Back to the drawing board…Waiting to speak to new OBGYN about any missing fertility tests.

 

For those of you unfamiliar with HSG test, it is one method to see if you have blocked tubes or scar tissue in your uterus, which affects a woman’s ability to become pregnant or continue to carry a pregnancy. They use contrast dye to see if there are any abnormalities. I had done a little research on HSG tests and learned women who experience more pain during the procedure tend to have scarring of their uterus or blockage in their fallopian tubes. There were three women performing the HSG test on me. One was the radiologist inserting the catheter and dye, the other was moving around the x-ray machine, and the third was in training. 

I was expecting maybe a level of pain similar to my SIS test, which normally tends to feel uncomfortable, but not unbearable. But this HSG procedure was really different. After she inserted the catheter she said there was a little balloon on the end of it where the dye goes through or something. Honestly I can’t remember exactly what she said because I was crying in pain.

If I had to describe the pain I’d say it was one of the worst pains I’ve felt in my life, but it would come in very short waves. My pain would go up each time she put a little more dye in. It feels similar to miscarriage pain, at least that’s what it felt like to me. I really was not expecting this test to be this bad. In the middle of the test I wanted to tell them to stop everything. I wanted to get up and leave in the middle of it. The thought crossed my mind as I was laying there crying, I want to just give up on trying to have a baby. I can’t take any more of this.

I focused on deep breathing. I probably sounded like one of the women in the maternity ward with how loud I was breathing. I didn’t care, it was helping me somewhat. I was also doing a grounding technique that tends to help me, where I push my thumb and pointer finger together. But the pain was so intense at times that I was pushing my thumb nail incredibly hard into my finger. The nurse in training seemed to feel really bad for me and offered her hand for me to hold a couple times. I told her “it’s okay” and thanked her for the offer once the wave of pain subsided.

It sucked, like really sucked. But I got it done and over with. I experienced cramping off and on over the next few days. I’ve heard this test and the level of pain each person feels really varies. Some women don’t really feel much of anything, while other women describe it as being brutal. It really depends on what is going on inside your tubes and uterus. 

The results of the HSG procedure were that my tubes looked nice and clear, but I have significant scarring in my uterus. This can cause recurrent pregnancy loss and infertility.The report reads, “Significant scarring and synechia within the uterine cavity narrows the body and lower uterine segment.” I read the sentence and one word stuck out to me ‘synechia.’ Synechia? What the heck is that? I decided to Google ‘synechia uterus’ to try to learn what that word meant, because my doctor didn’t mention that word to me. Mind you, I am reading this report that was emailed to me after I spoke with her.

My Google search: Synechia uterus

Google results from Cleveland Clinic: “Asherman’s syndrome is an acquired condition (one you are not born with) that refers to having scar tissue in the uterus or in the cervix (the opening to the uterus). This scar tissue makes the walls of these organs stick together and reduces the size of the uterus. Asherman’s syndrome is also known as intrauterine synechiae or uterine synechiae. Synechiae means adhesions. Asherman’s syndrome is also called intrauterine adhesions (IUA).” 

My doctor told me I would need another surgery to remove the scarring. Problem is, sometimes the surgery to remove scarring can also create more scarring. With my most recent miscarriage I needed three subsequent surgeries to clear my uterus. This surgery would make it the fourth. I am now wondering if I have endometriosis, which can cause scarring to reoccur over and over. I’ve never been tested for endometriosis, so it’s possible I may actually have it, which would explain why I’ve needed surgery after surgery to remove scarring. 

From the little I understand, it looks like it is more likely the scarring I am experiencing may be from complications from the D&C procedures I needed after my last miscarriage. But that does not mean I don’t have endometriosis, it has not been ruled out yet. This HSG test opened a real can of worms and is leaving me with more questions. Even if I decided to stop trying to have a biological child, I would need this surgery regardless because ignoring Asherman’s Syndrome or Endometriosis can lead to more and more scarring, severe pain, and issues with menstruation.

On the bright side I am happy that I am getting the necessary testing done that I need if I want to continue IVF treatment. I am surprised my previous two Reproductive Endocrinologists never thought to do an HSG test. I’ve heard from some women in the infertility forums that this test was done on them fairly early on. But I suppose it’s better late than never. I am scheduled for my pre-op appointment this Friday, where I will learn more about the surgery. They told me the first step they want to do is a hysteroscopy. Which I’ve had done in the past, but it sounds like they may only do a hysteroscopy this first time and not the actual scar tissue removal at the same time like what my previous OBGYN would do. I’ll find out more here in a couple days what their plan is.

 

Karyotype Test

After seeing the first doctor who recommended an HSG test, I saw another OBGYN to get another opinion. This second doctor said that it was good I was going to get an HSG test done and agreed with the first doctor. She also recommended I do a Karyotype Test where they look to see if there are any other genetic issues I may have which could be contributing to the miscarriages. We already know I have the MTHFR gene mutation and both doctors agree that this mutation may or may not be contributing to the miscarriages. Both said that MTHFR gene mutations are common and there isn’t enough studies to make clear correlations between MTHFR and recurrent miscarriages. They also both said that it’s possible I could be the exception and that it could be a contributing factor.

While the first doctor decided on an HSG test, the other one decided to do a Karyotype test. She asked me, “Have you ever been tested for a balanced translocation?” I told her I was fairly sure I was tested for this, because I saw a geneticist years ago. I explained both my husband and I took the Natera Horizon 274 Test which analyzes your blood to see if either partner is a carrier for genetic diseases. But she said, “I don’t see anything in your records indicating you were tested for a balanced translocation. I am fairly certain this is not a part of the carrier screening.” As it turns out, my records do not show anything relating to a karyotype test. She suggested I do a Karyotype test to check for a balanced translocation. 

Years ago I remember calling my reproductive endocrinologist and asking her if I had a balanced translocation, after I had done some research on my own about it. I remember her saying, “If you did the Horizon 274 test, then you’ve been tested for a balanced translocation.” But this new doctor is saying the exact opposite of what she said. I told this new doctor, “It would not surprise me if they never tested me for a balanced translocation because they told me the wrong thing before about how I did not have the MTHFR gene mutation and I found out years later I really did have it. So let’s go ahead and do the Karyotype test, especially since there is nothing in my record about a karyotype test.” For the karyotype test it was a blood draw. I called today to check if my results were in yet (since it’s been two weeks now), but they said this test typically takes longer, upwards of three weeks. So now it’s a matter of just waiting. 

 

More Surgeries, One for Something More Serious

While I am waiting for the results from the Karyotype test, I will be speaking with the surgeon this Friday about what to expect for my uterine surgery to remove the scarring they found during the HSG test. I think it’s good that I am seeking out different opinions because both discovered tests I was missing. This is what I wanted, I wanted to know if there was anything missing. I feel good that the wheels are in motion, and I am making progress in a way during this break from fertility treatment.

But I have also been doing testing for something completely different. Let me take you back to earlier this year…

In January 2020 I first discovered a small lump in my breast. I didn’t think much of it at the time because it was so small and felt only slightly different from the rest of the tissue in my breast. I decided to make a mental note of how big it felt and see if it changed at all in the coming months. 

Months later I was preparing for my frozen embryo transfer with hormonal injections and I gained some weight. The lump felt a little bigger this time, but I figured maybe because I gained weight, or even because of the hormones I was on. The embryo failed to implant and I stopped taking injections because I wasn’t pregnant. I assumed maybe my body needs to have a menstrual cycle or two before this lump will get smaller. 

I’ve had two menstrual cycles since then and lost some weight. But instead of the lump getting smaller it feels as if it’s nearly tripled in size. My mom has had cancer twice, breast cancer and then endocrine cancer inside her lung. My dad also had cancer. So I am considered high risk. About four years ago I asked my previous doctor if I should get a mammogram but she told me that I was too young.  When you are younger breast tissue is more dense, which makes it more difficult for them to see anything on the mammogram. That doctor actually told me she would not refer me for a mammogram unless my mom’s doctor wrote a letter of referral to her, then she would consider a having me do a mammogram. My mom’s doctor was totally on board with doing this, but he retired shortly after and I never got that letter.

It seemed like a difficult process with several hoops to jump through, not to mention my doctor seemed dismissive about screening me. But I was concerned because my mom had aggressive breast cancer and my dad had just passed away from lung cancer although he was not a smoker. I think anyone in my position would want to at least get screened. But after trying to talk to my doctor again about screening she said the same thing and persuaded me not to get screened. I thought, “Maybe I am too young. Maybe I’m worrying for nothing.” So I decided to drop it for a while.

But now that I can actually feel this lump and it’s grown quite a bit in less than a year, I decided I really do need to get this checked out. Since my mom’s original doctor who was willing to write the referral had retired, Mom suggested I speak with the doctor who did her surgery to see what they say. They referred me to do a mammogram really quickly, within just a couple days.

 

Not a spa day. Wearing robe just before doing my first mammogram.

 

 

X-ray machine used for my recent mammogram.

 

The radiologist said she could definitely feel something. After waiting and waiting to hear the results, the radiologist assistant relayed the message to me that the radiologist couldn’t find any signs of cancer and to “come back for your next mammogram at forty years old.” She also said, “sometimes our breasts just get lumpy, maybe your fertility treatment had something to do with it.” 

With this news I almost decided not to even go to the follow-up appointment with the doctor. But I’m glad I did. My doctor also said that she could definitely feel something. “It feels like a tumor.” At first my brain stopped comprehending anything she said after ‘tumor.’ She explained the name of the tumor she thought it was but I was in a daze, only hearing ‘tumor.’ How could that be? 

I was even more confused because she said she didn’t think it was cancerous yet because it feels softer, and cancer tends to feel harder. I didn’t even realize you could have a tumor and it not be cancerous. “Given your family history and your high risk of developing cancer we should schedule surgery, but first let’s do an MRI.” She said an MRI is more sensitive to finding cancer compared to a mammogram, which can miss seeing cancer especially in younger women with more dense breast tissue. 

I asked my doctor if she thought my recent fertility treatment may be causing the lump and she asked, “Did you have the lump before the treatment?” I let her know that I did in fact feel the lump before treatment. She didn’t have a clear opinion either way whether she thought the lump got bigger because of the fertility treatment, but she did point out the fact that this lump was here before treatment. 

I told her I was hoping to start up with IVF treatment either by the end of the year or early next year. I asked her “What’s the longest I could go before needing this surgery on my breast?” and she said, “Before the end of the year, and before you try IVF again.” This seemed to add a new level of urgency to the situation. Before I asked her that question I figured she would tell me several years, because it didn’t seem cancerous just yet. But we won’t know for sure until I do an MRI if it’s cancer. 

She went on to say regardless of what the MRI shows, we should remove it because I am at high risk of it turning to cancer. So at best, this surgery would be preventative and at worst I could find out that I have cancer with this upcoming MRI. I may need to do a biopsy, which I need to ask her if that is different from the surgery she is talking about. She was very clear about the fact that I should not do IVF again until this lump is removed.  She explained my individual odds of getting cancer is a little over 25%. I was actually considering cancelling this appointment beforehand because I was certain she would say the same thing the radiologist said, “next mammogram at 40” but this doctor said, “Radiologists can miss things. Some women in their 30s do get cancer.” 

I left that appointment feeling completely blindsided with the news. I was not expecting that at all. I assumed she would also be dismissive like my previous doctor years ago, instead she was already talking about doing surgery. I take what she says very seriously because I truly believe she saved my mom’s life. They scheduled my MRI for the earliest time, several weeks from now. At this point we have not scheduled surgery yet because the MRI may show that it has spread to other parts. My mom’s breast cancer was the type you could not feel, and could only be seen on MRI as tiny specks all spread throughout. So it’s possible that this is more than just a single lump. It’s also possible it’s not cancer, but my doctor still wants to remove this lump to prevent it from turning into cancer.

Emotionally, I am a wreck, I’m not going to lie. Not only do I have yet again another surgery for my scar tissue in my uterus but now it’s looking like I will also need this surgery to remove the lump in my breast. It’s really overwhelming that both of these are happening at the same time, on top of the fact that I need both surgeries in order to move forward with IVF treatment. I still haven’t processed this news fully, I truly feel like I am in a daze and none of this is real.

I suppose instead of spinning off into space with worry, I should ground myself by being grateful for finding out this information. I am so thankful these doctors are doing their best to really investigate what’s going on with my health. They really are on top of things. I am glad I decided to seek out new doctors for my care, because I could have been dealing with so much worse physical health later down the road.

I need to practice other healthy coping skills in addition to gratitude. None of this news is easy to digest. But last night I was able to find some dark humor in the whole situation. I joked with my husband, “They are taking parts from me there [pointing down] and now here [holding boob]. What’s going to be left of me?” I laughed and I was able to get him to laugh too. I didn’t think I would be able to find humor in any of this but maybe this coping skill, among others, will help me get through all of this. 

 

Further Recommended Reading:

Breast Self-Exam from BreastCancer.org

Breast Cancer Statistics in Young Adults from Young Survivor Coalition

FET Prep Week 24: Good to Go! | Starting PIO Shots | Ways to Thicken Uterine Lining for Embryo Transfer

FET Prep Week 24: Good to Go! | Starting PIO Shots | Ways to Thicken Uterine Lining for Embryo Transfer

Last week I talked about how my lining was too thin. Last week my lining was 5mm, and this week it went up to 5.3mm. Not much of a difference in my opinion. I’ve read there is a range of acceptable lining measurements. Anywhere from 6mm to 10mm seems to be the general consensus for acceptable lining measurements. I was certain that my doctor was going to either postpone my transfer again or cancel it all together. 

 

Entry written prior to posted date.

 

Catch-up on Previous FET Prep Posts

FET Prep Week 1: 3.5 months until FET

FET Prep Week 2: Supplements, WTF Email, & Increased AMH Level

FET Prep Week 3: You say Future Tripping, I say Future Planning

FET Prep Week 4: Bad News from SIS Test

FET Prep Week 5: Surgery, Depression & Trip to Nevada

FET Prep Week 6: Relax! You’re on Vacation.

FET Prep Week 7: Food Plan, Medical Debt,  Post-op Follow-up, & Imagining Motherhood

FET Prep Week 8: Migraines & Some Good News

FET Prep Week 9: A Tough Decision

FET Prep Week 10: Down-Regulation Started, Infertility Group, Coronavirus Concerns

FET Prep Week 11: Possible COVID-19 Travel Restrictions, Postpone Fertility Treatment?, & The Skyrocketing Cost of Leuprolide

FET Prep Week 12: Clinic Says “No FET” due to COVID-19 Pandemic, Digital Roundtable on COVID-19

FET Prep Week 13: FET Scheduled After Clinic Partially Reopened

FET Prep Week 14: Plans Changed, Flying Solo, & Confusing Med Instructions

FET Prep Week 15: Should This be Happening? | To Lovenox, or Not to Lovenox, that is the question. | High Anxiety from Methylfolate

FET Prep Week 16: Injections Started | Approved for Lovenox | New Vitamins to Reduce Anxiety

FET Prep Week 17: Suppression Check Disappointment | The Downsides of Fertility Meds

FET Prep Week 18: Altered Plans Due to Cyst | On Different Pages with Spouse

FET Prep Week 19: Facepalm and Panic Moment | Treatment During COVID & Seattle’s ‘CHOP’ Protests | 3rd Monitoring Appointment Results

FET Prep Week 20: Clinic Cancels My FET 

FET Prep Week 21: Starting All Over | Scary Side Effect? | Not Enough Syringes | Move or Travel Abroad for Treatment?

FET Prep Week 22: Hormonal Hot Mess 

FET Prep Week 23: Transfer Date Postponed Due to Thin Lining

Countdown Until FET: 1 day (as of 8-2-2020)

 

FET Prep (9)

 

Good to Go!

I had my ultrasound and blood draw to test my progesterone and estrogen levels on July 28th. Over the years I’ve gone to so many ultrasound appointments I know practically exactly what to look for on the screen. Even before the ultrasound tech can tell me any bad news, I can already see it. During my egg retrievals I could spot almost every follicle, with the occasional exception of a few super tiny ones. I can also recognize a dreaded cyst on the screen. More recently, I’ve been able to see how long my endometrium is, even when they quickly dart from one measurement to the next. I saw 5.3mm flash across the screen. Damn I thought. That was the longest my lining measured out of the three different ones she took of it. 

 

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Different shots of my uterine lining thickness from my appointment on July 28th.

 

I left feeling somewhat defeated but I knew everything would depend on what my doctor says next. I had already done my blood draw before my ultrasound. So now I just have to wait. I got a call that afternoon that both my estrogen and progesterone levels were good and that I was approved for my embryo transfer.

“Oh, I thought for sure my transfer would be postponed or cancelled since my lining is only 5.3mm” I said to my nurse.

“Well it is slightly on the low end but by the time we do your transfer next week it should be right where we want it to be. Your progesterone and estrogen levels are perfect and right where we want them to be, so we think that your lining will thicken up in time” my nurse said.

So my embryo transfer has been officially scheduled for August 3rd. Finally! It’s been a long road, that’s for sure. I am now on a new medicine routine. No more Lupron (thank you Jesus!), no more vaginal estrace. Instead I am on oral Estrace 3 times daily, Endometrin in the morning and evening, and 1mL of the PIO (progesterone in oil) booty shot in the evening. 

 

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Showing my arm from my blood draw and my dog starts licking my hand. I think he thought I had a treat for him.  🙂

 

Starting PIO Shots

I’ve decided to have my husband help me with the PIO shots, and when he is not around the plan is for me to do it on my own. So I will need to do it on my own when I go to Seattle. I’m kind of afraid, because I’ve heard stories about women passing out when they try to do it themselves. This one poor girl passed out in the bathroom and fell on the ground. When she came to, she still felt super dizzy and crawled out slowly to the living room where her husband was. As she crawled out, the shot was still sticking in her butt as she asked for her husband’s help. That poor girl.

I don’t want to be that girl, so I need to figure out how to do this shot on my own without passing out. Sure I’ve done lots of stomach shots, but they are a fraction of the size of the PIO shot. Plus there are extra steps to the PIO shot, like pulling back the plunger to make sure there’s no blood, for example. Got blood? Start all over. Thankfully my husband seems fine with giving me the shot. One less stress, plus I told him “You are a part of the process now, and helping to hopefully create a little baby.” I wanted him to feel included and that he is contributing in some way. I’ve heard that some men feel really out of the loop and helpless. Well my boys, offer to help your wife with her PIO shots. I’m telling you, as long as you follow the instructions and help her relax during the shot, you truly are doing a lot to help her. 

 

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About to do my first PIO (Progesterone in Oil) shot. That needle is scary long.

 

Ways to Thicken Uterine Lining for Embryo Transfer

I will probably create an article specifically on this subject in the future. But for now I wanted to talk briefly about some of the things I’ve done recently to try to get my uterine lining thicker. Obviously it isn’t quite where my doctor wants it just yet (currently at 5.3mm), but I thought I would try some of the ideas that are often suggested and tend to be widely accepted as being helpful for increasing uterine lining thickness. Talk with your doctor before trying some of these suggestions. 

I decided to increase the L-Arganine I was taking to 6g daily. I was hesitant to take this in the past because I’ve heard it can affect egg quality, which can impact future IVF cycles. But in the case of FET cycles, it seems to be fairly helpful for some women. I was taking a much lower dose before and not on a regular basis, but this week it was 6g for me. Where did I get the 6g dose from? If you read It Starts with the Egg by Rebecca Fett, she goes into a lot of detail about various supplements to take depending on where you are at with your treatment. According to Fett, taking L-Arganine in conjunction with Vitamin E can help thicken uterine lining but is only recommended for frozen embryo transfers and not fresh transfers.

I also ate more vegetables this week than I normally do. Eating fresh fruits, veggies, beans, legumes, nuts, and basically a medetarrian diet, while also avoiding processed food as much as possible seems to be a widely accepted way to improve fertility odds. I can hear my Keto friends yelling at me. No worries though, you do you. If you are following your doctors recommendations and you are seeing the results you want, more power to you.

It just so happened I had a lot of walnuts on hand, which I’ve learned nuts can help thicken the uterine lining and make it more receptive for an embryo. My eyes kind of bugged out of my head when I saw my walnuts were about 200 calories for ¼ cup. But if it helps my lining thicken up, I will do what I gotta do. Doing an embryo transfer is usually not a good time to lose weight, and the focus should be on nutrition. Trying to lose weight while also doing a transfer I’ve heard adds extra stress to the body. Extra stress is no bueno during embryo transfers. I’m not going to stress too much about my extra five-ish pounds (emphasis on the “ish”)  I’ve gained if I know I’m also eating healthily. 

I decided to also seek out advice from my Instagram followers about what they did to help increase their lining and I received some good ideas. I’ve heard that acupuncture can be helpful and this too was being echoed by some of my followers. After looking into it more, from what I understand acupuncture tends to be more helpful doing it a series of times leading up to the transfer, and there were not as significant results from just one session prior to transfer. Also, if the added expense and the idea of acupuncture seems stressful, you don’t have to do it. Remember, you can reduce stress in other ways. I opted not to do acupuncture for this FET because of the expense as well potentially being exposed to COVID in the acupuncture office. Being in close contact with someone who sees multiple people all day did not seem worth doing acupuncture, but that’s a personal decision. 

It was quite serendipitous that I received about half a dozen suggestions across different social media accounts (at the same time) for something I had never heard of.  I decided to check in with my MTHFR facebook groups I’m a member of and I asked if they had any suggestions on improving my lining, as well as any other ideas the had to help increase my odds of my embryo implanting. Everyone was suggesting Estrogen patches. I’ve never heard of this, and it could potentially be a game changer for me. Although it’s kind of late in the game to do anything now, since I am so close to my transfer date, this could definitely help me in the future.  Perhaps it could help me during my pregnancy, if I am lucky enough to become pregnant. I will definitely ask about it. 

Having proper estrogen levels can help thicken your lining, and if you have a MTHFR gene mutation your body may not be absorbing the oral Estrace pill as well as a patch of estrogen could. This blew my mind. First of all, why had no doctor told me this before, despite me telling them about my gene mutation? Even without the mutation, wouldn’t you as a doctor consider alternative methods such as the estrogen patch if your patient’s lining and estrogen levels have been consistently off. What gives? Why not mention this? I’m thankful I learned about this from other patients online, perhaps this will help me later on. Although social media isn’t the be-all and end-all for treatment, it has proven to be a good tool to help me advocate for myself to try different approaches.

 

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Got out to Hatcher Pass in Palmer, Alaska. It was nice to get out.

 

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Mom was able to go with us too, she brought her little Yorkie. Nothing like mountain-fresh air.

FET Prep Week 18: Altered Plans Due to Cyst | On Different Pages with Spouse

FET Prep Week 18: Altered Plans Due to Cyst | On Different Pages with Spouse

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. 

 

Catch-up on Previous FET Prep Posts

FET Prep Week 1: 3.5 months until FET

FET Prep Week 2: Supplements, WTF Email, & Increased AMH Level

FET Prep Week 3: You say Future Tripping, I say Future Planning

FET Prep Week 4: Bad News from SIS Test

FET Prep Week 5: Surgery, Depression & Trip to Nevada

FET Prep Week 6: Relax! You’re on Vacation.

FET Prep Week 7: Food Plan, Medical Debt,  Post-op Follow-up, & Imagining Motherhood

FET Prep Week 8: Migraines & Some Good News

FET Prep Week 9: A Tough Decision

FET Prep Week 10: Down-Regulation Started, Infertility Group, Coronavirus Concerns

FET Prep Week 11: Possible COVID-19 Travel Restrictions, Postpone Fertility Treatment?, & The Skyrocketing Cost of Leuprolide

FET Prep Week 12: Clinic Says “No FET” due to COVID-19 Pandemic, Digital Roundtable on COVID-19

FET Prep Week 13: FET Scheduled After Clinic Partially Reopened

FET Prep Week 14: Plans Changed, Flying Solo, & Confusing Med Instructions

FET Prep Week 15: Should This be Happening? | To Lovenox, or Not to Lovenox, that is the question. | High Anxiety from Methylfolate

FET Prep Week 16: Injections Started | Approved for Lovenox | New Vitamins to Reduce Anxiety

FET Prep Week 17: Suppression Check Disappointment | The Downsides of Fertility Meds

Countdown Until FET: 11 days (as of 6-21-2020)

 

FET Prep (4)

 

Altered Plans Due to Cyst

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. 

FET Prep Week 17: Suppression Check Disappointment | The Downsides of Fertility Meds

FET Prep Week 17: Suppression Check Disappointment | The Downsides of Fertility Meds

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.

 

Catch-up on Previous FET Prep Posts

FET Prep Week 1: 3.5 months until FET

FET Prep Week 2: Supplements, WTF Email, & Increased AMH Level

FET Prep Week 3: You say Future Tripping, I say Future Planning

FET Prep Week 4: Bad News from SIS Test

FET Prep Week 5: Surgery, Depression & Trip to Nevada

FET Prep Week 6: Relax! You’re on Vacation.

FET Prep Week 7: Food Plan, Medical Debt,  Post-op Follow-up, & Imagining Motherhood

FET Prep Week 8: Migraines & Some Good News

FET Prep Week 9: A Tough Decision

FET Prep Week 10: Down-Regulation Started, Infertility Group, Coronavirus Concerns

FET Prep Week 11: Possible COVID-19 Travel Restrictions, Postpone Fertility Treatment?, & The Skyrocketing Cost of Leuprolide

FET Prep Week 12: Clinic Says “No FET” due to COVID-19 Pandemic, Digital Roundtable on COVID-19

FET Prep Week 13: FET Scheduled After Clinic Partially Reopened

FET Prep Week 14: Plans Changed, Flying Solo, & Confusing Med Instructions

FET Prep Week 15: Should This be Happening? | To Lovenox, or Not to Lovenox, that is the question. | High Anxiety from Methylfolate

FET Prep Week 16: Injections Started | Approved for Lovenox | New Vitamins to Reduce Anxiety

Countdown Until FET: 18 days (as of 6-14-2020)

 

James & Katie

Suppression Check Disappointment

Pre-Suppression Check Concerns

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.

 

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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.

 

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FET Prep Week 16: Injections Started | Approved for Lovenox | New Vitamins to Reduce Anxiety

FET Prep Week 16: Injections Started | Approved for Lovenox | New Vitamins to Reduce Anxiety

“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. 

 

Catch-up on Previous FET Prep Posts

FET Prep Week 1: 3.5 months until FET

FET Prep Week 2: Supplements, WTF Email, & Increased AMH Level

FET Prep Week 3: You say Future Tripping, I say Future Planning

FET Prep Week 4: Bad News from SIS Test

FET Prep Week 5: Surgery, Depression & Trip to Nevada

FET Prep Week 6: Relax! You’re on Vacation.

FET Prep Week 7: Food Plan, Medical Debt,  Post-op Follow-up, & Imagining Motherhood

FET Prep Week 8: Migraines & Some Good News

FET Prep Week 9: A Tough Decision

FET Prep Week 10: Down-Regulation Started, Infertility Group, Coronavirus Concerns

FET Prep Week 11: Possible COVID-19 Travel Restrictions, Postpone Fertility Treatment?, & The Skyrocketing Cost of Leuprolide

FET Prep Week 12: Clinic Says “No FET” due to COVID-19 Pandemic, Digital Roundtable on COVID-19

FET Prep Week 13: FET Scheduled After Clinic Partially Reopened

FET Prep Week 14: Plans Changed, Flying Solo, & Confusing Med Instructions

FET Prep Week 15: Should This be Happening? | To Lovenox, or Not to Lovenox, that is the question. | High Anxiety from Methylfolate

Countdown Until FET: 25 days (as of 6-7-2020)

 

FET Prep_ Week 16

 

Injections Started

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. 

 

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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. 

 

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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. 

 

 

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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. 

 

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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. 

 

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Organized all my vitamins in three different recycled bottles. Makes it easy to grab and go.

FET Prep Week 15: Should This be Happening? | To Lovenox, or Not to Lovenox, that is the question. | High Anxiety from Methylfolate

FET Prep Week 15: Should This be Happening? | To Lovenox, or Not to Lovenox, that is the question. | High Anxiety from Methylfolate

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. 

 

Catch-up on Previous FET Prep Posts

FET Prep Week 1: 3.5 months until FET

FET Prep Week 2: Supplements, WTF Email, & Increased AMH Level

FET Prep Week 3: You say Future Tripping, I say Future Planning

FET Prep Week 4: Bad News from SIS Test

FET Prep Week 5: Surgery, Depression & Trip to Nevada

FET Prep Week 6: Relax! You’re on Vacation.

FET Prep Week 7: Food Plan, Medical Debt,  Post-op Follow-up, & Imagining Motherhood

FET Prep Week 8: Migraines & Some Good News

FET Prep Week 9: A Tough Decision

FET Prep Week 10: Down-Regulation Started, Infertility Group, Coronavirus Concerns

FET Prep Week 11: Possible COVID-19 Travel Restrictions, Postpone Fertility Treatment?, & The Skyrocketing Cost of Leuprolide

FET Prep Week 12: Clinic Says “No FET” due to COVID-19 Pandemic, Digital Roundtable on COVID-19

FET Prep Week 13: FET Scheduled After Clinic Partially Reopened

FET Prep Week 14: Plans Changed, Flying Solo, & Confusing Med Instructions

Countdown Until FET: 32 days (as of 5-31-2020)

 

FET Prep (2)

 

Should This be Happening?

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. 

 

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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.

 

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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. 

 

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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. 

FET Prep Week 9: A Tough Decision

FET Prep Week 9: A Tough Decision

Something’s got to give, and so I took a risk and made a decision to do something that most everyone told me not to do. Sometimes you have to do what you feel is right, even if it flies in the face of everything you have heard. I’m going to be talking about a subject that is pretty controversial, when to listen to your body and not your doctor. Before we get into it, if you are following your doctors advice and you just don’t feel right go seek a second opinion. 

 

Catch-up on Previous FET Prep Posts

FET Prep Week 1: 3.5 months until FET

FET Prep Week 2: Supplements, WTF Email, & Increased AMH Level

FET Prep Week 3: You say Future Tripping, I say Future Planning

FET Prep Week 4: Bad News from SIS Test

FET Prep Week 5: Surgery, Depression & Trip to Nevada

FET Prep Week 6: Relax! You’re on Vacation.

FET Prep Week 7: Food Plan, Medical Debt,  Post-op Follow-up, & Imagining Motherhood

FET Prep Week 8: Migraines & Some Good News

Countdown Until FET: 53 days (as of 3-2-2020)

 

So what was the big decision I had to make? I decided to stop taking every medicine and supplement for a short period of time until I could figure out which one may be causing my migraines. It is a big risk but I felt that I had to do it this way, like starting from scratch. I have the MTHFR gene mutation, which is another controversial subject in itself. But with the MTHFR gene mutation, we cannot process folate correctly and are more likely to have a buildup of toxins in our bodies. If our liver cannot process medication properly it wreaks havoc on our whole body. One way a person can be symptomatic with their MTHFR gene mutation is through recurrent miscarriages and migraines. This is where you picture a big blinking neon arrow pointing down at me.

I think it was a whole domino effect, with no single root cause but various things that have contributed to the crappy situation I found myself in these past few weeks with my migraines. I decided to stop my blood pressure medicine which pretty much every single internet page on the subject screams at you to never do. But after revisiting the side effects of my blood pressure medicine, it’s no wonder I’ve been feeling like garbage. 

 

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Some of the side effects of the blood pressure pill I was on. I had all of them except upset stomach.

 

My doctor told me if I don’t take my blood pressure medicine within a 1-2 hour window of when it’s prescribed, I’m basically asking for a rebound headache. And when you are experiencing pain in the body, such as headaches or migraine, it can elevate your blood pressure. Then I would have to take migraine medicine which I’ve been told not to take when trying to conceive. You see my predicament now? 

It boils down to “You need this pill, but if you don’t take this pill on time you will probably need this second pill. You may need a second dose of the second pill if your first pill didn’t work. In the morning, if yesterday’s second dose of the second pill didn’t work for the issue of the first pill, just take the first pill again along with the second pill. And it’s totally okay if you take two of this third pill with the second pill. And if the third pill doesn’t work for the second day’s dose of the second pill that was supposed to help with the first days first pill, then yes you can take a second dose of the third pill. But don’t forget to take your first pill again at night after that.” That is essentially the conversation I had with my doctor, minus the brand names of the pills. And when I asked the question, “But what if my second pill doesn’t work at all anymore?” she had a completely dumbfounded look on her face and said, “That won’t happen. It’s the only medicine that will work to help with your headache. It’s the best one out there.” Now here I am three weeks later and was still having daily headaches. Hence my decision to say “f**k this s**t” and start from scratch.

Mind you my blood pressure isn’t at stroke levels, it’s just elevated. Honestly losing weight, eating better, and exercising more is probably all I need. I am going to slowly reintroduce my supplements, one at a time to see if that’s what is causing the headaches. I have a blood pressure monitor at home that I will be using to check it. 

Mini Victories for the Week

Made the tough decision to take a break from medicine to see what may be causing migraines.

Replacing 1 meal per day with a protein shake.

Work in Progress

More exercise. 

Monitor blood pressure levels.

Slowly start taking supplements again.

 

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Book Review: “Dirty Genes” by Dr. Ben Lynch

Book Review: “Dirty Genes” by Dr. Ben Lynch

HopingForBaby.com Rating: 5 out of 5

Disclaimer: I am following some of the advice from this book. I spoke with my medical providers prior to changing my own individual treatment plan. Please speak with your medical provider about your own treatment plan prior to trying any suggestions from this book and whether you would benefit from those suggestions or not.

Have you been trying to conceive for more than one year? Have you had more than one miscarriage? It’s possible you may have a genetic mutation and not even know it, and it’s more common than you might think. “About 30 to 40 percent of the American population may have a mutation at gene position C677T” (Healthline, 2019). I have a MTHFR gene mutation at C677T, so I am apparently in good company with the rest of the world. In Dr. Ben Lynch’s book “Dirty Genes: A Breakthrough Program to Treat the Root Cause of Illness and Optimize Your Health” he shares information about some of the most common genetic mutations or “snips.” Dr. Lynch is a molecular biologist and has a genetic mutation himself, the MTHFR gene mutation. His personal experience combined with his academic findings motivated him to write this book and share his knowledge on the subject. 

It is important to note, there are those in the medical field who are dismissive of Dr. Lynch’s medical claims, mostly on the basis of there not being enough studies yet on the subject as well as how a large portion of the population has at least one genetic snip. Some patients may be told by their doctor, “Many people live with a genetic mutation” or “You don’t need to be tested for it.” But I personally believe knowledge is power. If you are having unexplained infertility and recurrent miscarriages, you should definitely consider genetic testing. Why have genetic testing? Because you may actually have a genetic snip and you may benefit from certain supplementation or diet changes. 

After I confirmed I had a MTHFR gene mutation through my OBGYN’s test, I learned that the folic acid in most prenatals I was taking can actually block the activated form of folate that my body needs. So now, instead of folic acid, I take a methylfolate supplement. My RE, OBGYN, and Dr. Lynch’s book has all pointed me in that new direction, away from folic acid and instead to take methylfolate. As far as natural forms of folate, dark leafy greens are really important if you have an MTHFR snip. Not to mention, most people should eat dark leafy greens anyway. I am still in the beginning stages of learning about my gene mutation. But I am hopeful the new lifestyle changes I’m making, in part from reading this book, might help me to possibly have a child in the future.

 

This post may contain affiliate links. You can read the disclosure here

 

Order your DNA Test today from 23andMe to learn if you have a genetic mutation, as suggested by Dr. Lynch in his book “Dirty Genes.”

 

Purchase Dr. Ben Lynch’s book “Dirty Genes: A Breakthrough Program to Treat the Root Cause of Illness and Optimize Your Health” by clicking here.

 

 

Featured Image Credit: https://www.amazon.com/Dirty-Genes-Breakthrough-Program-Optimize/dp/0062698141/ref=sr_1_3?keywords=dirty+genes&qid=1575320949&sr=8-3

Results from Anora Test

Results from Anora Test

This post may contain affiliate links. You can read the disclosure here

 

My husband and I were debating whether to do the Anora test from this pregnancy loss. We’ve done the test before with two of our other miscarriages. Both of those tests determined that the embryos had a chromosomal abnormality caused by maternal origin. One had Trisomy 15 and the other had Trisomy 16. My other miscarriages we did not test. At first he and I were leaning towards not doing the test for my most recent loss this September, because we assumed it would be the same exact scenario of a Trisomy due to maternal origin. We believed it would have been a waste of time and money. But my doctor had a good reason to try to talk us into doing the test again.

 

Now that we have recently found out I have the MTHFR gene mutation, my doctor wanted to determine whether this embryo had a chromosomal abnormality. He said, “If the embryo does not have a chromosomal abnormality we might have you try Lovenox.” Lovenox is a medication used to help during pregnancy for women who have a MTHFR gene mutation. He said that he would talk to my out-of-state doctor as far as the next steps after the Anora results.

 

When my doctor called me several days later with the results he said, “It was a triploidy of paternal origin.” This was the first time my egg quality had nothing to do with the chromosomal abnormality. But unfortunately, now we also have a chromosomal abnormality issue from my husband’s side (paternal origin). So I’m unsure whether I will still need to take Lovenox or not as a precaution with my next pregnancy. That’s one of the questions I need to ask him. He explained there were two YY chromosomes in this embryo, in other words two sperm had entered one egg. I remembered that the clinic I went to just prior to my current doctor believed this pregnancy was either one of two things; 1) pregnancy with multiple embryos, or 2) a molar pregnancy. 

 

But he confirmed this was not a pregnancy with multiples, and that it could be a partial molar pregnancy. A molar pregnancy is bad for several reasons. I was feeling very overwhelmed because I had done prior research and understood that molar pregnancies could cause some serious complications. Even with the D&C surgery, it is possible the partial molar pregnancy could have already triggered issues in my body.

 

A partial molar pregnancy, from what I understand, is when the cells of the baby can mutate within the mother’s womb and cause tumors within the uterus. The worst case scenarios for a molar pregnancy is permanent infertility and/or cancer. Even as I am writing this now I paused my typing for a few moments and I feel a sense of dread. Two terrible possible outcomes. So why does my doctor think it might be a partial molar pregnancy? He said one of the possible complications of a triploidy of paternal origin (the results of my Anora test on the embryo) is a molar pregnancy. And one of the possible complications of a molar pregnancy can lead to something called Persistent Trophoblastic Disease (PTD), which is caused when tissue from a molar pregnancy isn’t completely removed. 

 

Genetic-events-occurring-in-normal-conceptions-and-complete-and-partial-molar-pregnancies

Image of normal conception compared to complete mole and partial mole. Partial mole shows two paternal sets of genes resulting in in non-viable fetus.

 

PTD can lead to Gestational Trophoblastic Disease (GTD) and this can lead to Choriocarcinoma which is a fast-spreading cancer that starts in the uterus. Needless to say I’m feeling overwhelmed. I asked my doctor how they would know if it was a partial molar pregnancy and he said, “We have to check your blood levels weekly to make sure your hCG levels are dropping back down to zero. If they don’t drop down to zero within a few weeks it could indicate a partial molar pregnancy.”

 

I did some research about molar pregnancies prior to talking to my current doctor, the reason being that my previous doctor said, “It’s either multiples or a molar pregnancy.” With a molar pregnancy the hCG level rises so dramatically it can be mistaken for a pregnancy of multiples. My first doctor said my hCG level was 81,000 when a normal range at that time would have been around 3,000. Clearly my levels were very high.

 

So there is a very real possibility that I might have to deal with the after effects of a partial molar pregnancy. It’s already affecting my plans. I was planning to do my Frozen Embryo Transfer (FET) in December 2019. I was going to do the Saline Infusion Sonohysterography (SIS) procedure to make sure my uterus was good to go with no abnormalities and then be jetting off to my procedure in Seattle. My doctor said, “Unfortunately both [doctor in Seattle] and I think that it would be best to postpone your FET until we rule out a partial molar pregnancy. Two months is just not enough time to figure that out. We will need to do weekly blood draws until your hCG drops down to zero. Once it drops down to zero we will need to monitor your blood levels each month for six months. He and I think that you should wait at least six months before you do the transfer.” Some websites suggested waiting 6-12 months before trying again. The risk of doing it too early is it could trigger the cells to become cancerous. So at the earliest I could do my FET in April 2020. 

 

I have my 2-week post-op doctor appointment here on Thursday. I’ll be doing my first weekly blood draw on that day. My doctor will also be putting me on birth control for a while, I’m assuming until I am ready to start my FET protocol which could be anywhere from 6-12 months from now. My little embryo has been waiting so long already and I hate to think that it has to sit even longer. But like my doctor and I agreed over the phone, “It’s better to be safe than sorry.”

 

I’ve had so much bad luck over these years I’ve come to expect it. I suppose it has become a defense mechanism of sorts. “Hope for the best but expect the worst.” Part of me feels like if I don’t expect the worst then I won’t be mentally prepared to handle it when it comes. Like with this situation for example, I was already learning what molar pregnancies were before my current doctor said this is what we might be dealing with. Initially I was very overwhelmed after that phone call. But what can you do? You just have to follow the doctors orders and learn what you can online about whatever issue you are dealing with. If there is nothing you can do about the situation in that moment you just have to let it be. Personally, I think it’s better to do research shortly before meeting with your doctor so you can at least be prepared with certain questions. By doing that closer to your appointment you are less likely to sit there stewing on potential negative outcomes. Granted, I am saying this about a diagnosis that has not been confirmed as cancerous. I believe if I was diagnosed with cancer I would probably be researching every corner of the internet to figure out how to get rid of it. But for now, I am trying to guard myself against “worst-case scenario” thinking. The best way I know how to do that is to distract myself.

 

I’ve been listening to my audio book and watching TV lately as a distraction.  Maybe I’ll listen to my audiobook while I clean the house. My house could use a good clutter clean, deep clean, and every other clean in between. I suppose that would help me take my mind off of this too. I think it’s so important to lean on healthy coping skills during the times that we are worried about the future. Beyond distraction comes acceptance, learning, and healing. With each new obstacle that comes my way I choose to remain determined to keep moving forward and do everything I can to create our family. I want to look back on these times and know without a doubt I did absolutely everything I could.

 

Thank you for reading. 

Catch up on past entries by clicking here for the archives page. 

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Image Credit: Partial Molar Pregnancy Diagram by Phillip Savage on ResearchGate

Week 10 of Pregnancy: 6th Miscarriage

Week 10 of Pregnancy: 6th Miscarriage

Even without the ultrasound tech saying a word I knew something was wrong. There was no pulsating heartbeat like I saw with the last ultrasound. It was just complete stillness. My doctor and nurse seemed to be feeling the weight of sadness for me, they said they were sorry to see me going through this. I cried a little bit in the bathroom after the ultrasound, but then focused on what needed to be done afterward. I held it together while I was still in the office so I could think clearly enough to ask the questions I needed to. 

 

The ultrasound tech said the baby stopped growing around the 9th week based on their measurements. On the bright side, this is the longest pregnancy I’ve ever had. So maybe it being nine weeks could be attributed to some of the changes I’ve been making with how I eat and the supplements I’ve been taking. Unfortunately I didn’t find out I was positive for a MTHFR gene mutation until a couple weeks ago. Maybe had I known I could have started the Baby Aspirin sooner and maybe it would have protected this baby. 

 

My doctor highly recommends I do the Anora genetic testing on the baby to see whether it had a chromosomal issue. If it had a chromosomal issue, there’s nothing that could have prevented it. But, if it is chromosomally normal this may help determine whether I need to be on the medication Lovenox. In other words, if it’s normal maybe medication is what I need to prevent this from happening again. My geneticist said that with my particular type of gene mutation I do not need to be on Lovenox, but I’d like to get my Seattle doctor’s opinion. My local OBGYN says he communicates with the doctors at Seattle Reproductive Medicine (just like my prior Reproductive Endocrinologist). He said he will ask the question regarding whether Lovenox might be needed for my next pregnancy. My local doc seems to be on the fence about the Lovenox. I’ve also heard that some women with my issue also take progesterone, even if their levels show normal. I think I will also ask my Seattle doc this question too. I need to do my own research as well.

 

I have to have surgery Wednesday, due to this being a “missed miscarriage.” My doctor advised me to cancel my trip to Denali I had planned for the weekend. I’ve been dealing with some cramping, no bleeding yet, and still very nauseous. The most worrisome symptom have is that I feel like I’m going to pass out several times a day. The other day I was in the shower and all of the sudden my upper body felt really heavy and weak. My vision started to go black from the outside moving inward to where I could hardly see. I got out of the shower and lied down right away. I ate breakfast before my shower with two cups of water and some juice, so I had enough in my stomach. In hindsight, each of my miscarriages I felt this same way, like I was going to pass out or like I was incredibly dizzy. I asked my doctor about this and he said it could be due to the dropping levels of progesterone from the miscarriage. He suggested I eat small and frequent meals throughout the day and drink plenty of water to prevent this.

 

As far as how I’m handling it emotionally, it hasn’t been easy. But I decided to take a week off work for several reasons; 1) I don’t want to start miscarrying while I’m at work, 2) I need several days to recover from the surgery, 3) I need to take this time process the loss before I jump back into work. Based on my past experience with missed miscarriages and surgeries, taking a week off seems to be the perfect amount of time for me to move on physically and emotionally. With my very first loss I needed two weeks, mostly to deal with it emotionally. I suppose I’m bouncing back faster than I used to.

 

Honestly, at first I was inundated with all the “should have, could have, would have” thoughts. It was overwhelming to think about all the variables I could have adjusted, and maybe this wouldn’t have happened. If you are going through a difficult situation like myself, I think it’s incredibly important to not place blame. It took me so long to come to this realization. Don’t place blame on your doctor, don’t place blame on God, and don’t place blame on yourself. The sheer amount of negative energy that comes from those thoughts can make you become blind to possible answers that can lead you in the right direction. Blame closes off opportunities, whereas acceptance can bring clarity. By acceptance, I mean accepting what you are dealing with right now in this moment and moving forward.  

 

The other day I visualized myself standing at a fork in the road. I could take the dark, bleak path or I can choose the more vibrant path. The dark path is depression, confusion, negativity, and feeling stuck. Whereas the brighter path is gratitude, strength, inspiration, and growth. Admittedly, I was already in motion toward the darker path. But instead, I made the turn and began walking the brighter path. You can also choose the direction of your journey, no matter how far down the dark path you find yourself, you can always turn it around. Yes the outcome with each pregnancy may be out of my control, but what is in my control is my perception. Some people have told me I should maybe give up trying to have a child. But there is something inside me that says, “No way! Not yet.” It’s like a fire that is still going strong inside me, despite everything that has happened. As long as that fire is still burning, I’m going to continue this journey. 

 

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