I am so happy to announce the birth of our little girl Ava. She is now three months old. If you’ve been following along you may be wondering “Why did you not post about your pregnancy at all?” There were a lot of reasons I took a break from blogging after I found out I was pregnant. The main reason I took a break from blogging was to focus on being in the moment with my pregnancy. I reduced as many stressors as possible in order to be physically and mentally as well as possible. But I am very excited to get back into blogging again.
In my previous post you may remember I was talking with a doctor out of state about the possibility of Mini IVF out of state, as well as his keto diet he suggested to help me become more fertile. I was able to lose about 20 pounds doing intermittent fasting and avoiding junk food. I think losing weight helped me, but what I think helped me conceive more was that I had previously gotten surgery to correct my septate uterus and uterine scarring from Asherman’s Syndrome. I was born with a septate uterus which could have contributed to my previous miscarriages. I am so thankful for that doctor who was trained well enough to spot on the HSG Xray image when all my other doctors could not.
I will admit this pregnancy was really hard on me emotionally. I was experiencing a lot of anxiety because I was so used to every pregnancy turning into a miscarriage. Throughout most of my pregnancy I felt as if I was always waiting for something bad to happen, because that’s all I ever knew with pregnancy. I miscarried six times before and I also had a failed embryo transfer, so in total I consider that to be seven heartbreaking losses of children I could have had. I’ve had a hard time wrapping my brain around the amount of loss I’ve experienced over these past six years, and I think it’s something that is a process. I’ll never “get over it” but rather I will learn to live and cope with it better over the years.
So how did this pregnancy go? As I mentioned, I experienced a lot of anxiety, which I feel was normal considering all the loss I experienced before. I also had some scares during my pregnancy. I have high blood pressure normally when I’m not pregnant, but oddly enough my blood pressure dipped so low during my pregnancy I almost fainted about half a dozen times during my second trimester. I later learned that for many women blood pressure dips low in the second trimester. My doctor advised me to stop taking my blood pressure medicine because of this and I started to feel better. She told me that my blood pressure would probably go up again in my third trimester, which it did.
I had a few other scares. Because of my blood pressure issues I was told to look out for signs of preeclampsia. At one point my face swelled up on one side and I was worried it was preeclampsia so I called my doctor and they recommended I go to the hospital. The hospital determined it was a blocked salivary glad. They told me to eat sour candy to get me to salivate more and to reduce the swelling. That tops the weirdest doctor recommendation I’ve ever received but it actually worked. I was chewing on different sour candies and my face went back to normal.
The biggest scare I had during this pregnancy was that I was having contractions at work and felt really, really sick. It turns out I got Norovirus from my husband, who had been sick just before me. I was having full-on contractions, seven minutes apart, and I was only in my second trimester. I was terrified of losing this baby. The Norovirus made me so sick from all of the throwing up I was doing that it actually triggered the contractions and left me extremely dehydrated because I could not even keep down any water. I decided I had to go to the hospital for help at that point. They hooked me up to an IVF and gave me nausea medicine. Thank God I started to feel better. I was in the hospital for several days until I went home. Unfortunately Mom got Norovirus too after I had it. We think that maybe my husband first got the Norovirus from a food order he got, which caused all of us to get sick. I’m so thankful to the hospital for taking good care of me during such a scary time.
All throughout my pregnancy I had to give myself a shot twice per day for my blood clotting disorder MTHFR. I was used to doing belly shots (not the belly shots you might do in a bar…haha) during IVF rounds in the past. I was on Lovenox for most of my pregnancy and then near the end of my pregnancy I was taking heparin shots. I found out soon after I started the heparin shots that I was really lucky to get them when I did because there was a heparin shortage due to supply chain issues relating to COVID. I saw so many posts in different Facebook groups about how women were unable to get the heparin they needed during their pregnancy. I was grateful that I had the exact amount I needed to get by until my induction date.
I was scheduled to be induced one day before my due date. I was induced due to my blood pressure and blood clotting disorder, so they could monitor the whole labor and delivery process. I needed careful monitoring because hemorrhaging could happen, or my blood pressure could have gone too high or low in my case.
The birth itself started off not too bad, I was having contractions I didn’t even feel but the monitors were picking up. But then the contractions became really extreme. I told the nurse that I was ready for my epidural. She reassured me that the anesthesiologist was in the next room and would be helping me with my epidural shortly. But “shortly” was not enough time. I began having extreme contractions, to the point that I was screaming in pain “Something isn’t right! Help me!” I was so scared and in such pain that the nurses called my doctor in to check me again.
I went from 1cm dilated to giving birth in just under 2 hours. I had no epidural either because there was not enough time. Before I knew it the doctor was at my feet telling me that I needed to push. It was an extremely fast birth and the pain was so immense. It was not at all how I though my birth would be. I thought it would be a long drawn out process like my Mom said her birth was with me. The only thing I was processing in my birth was the pain.
But I was reassured by my nurse and doctor that my baby girl was okay, I felt so relieved. When I was able to feel the weight of my baby girl on my chest after she was brought into this world it was such an amazing feeling, words can’t describe. Before I knew it, my husband was holding up his phone taking a picture of the three of us. My first picture with my baby is of her tiny hand wrapped around my finger. He snapped a few more pictures to document the very special first moments with our daughter.
Shortly after the joy we felt, there was concern for a lesion they found on my daughter’s back. After several days in the maternity ward the lesion was getting worse and they were concerned that it might be related to something going on with her spine. I was an absolute mess with my emotions, thinking that my baby girl might have serious spine issues. The doctors had to transfer her to the NICU to monitor the issue with her back as well as the concern they had for her low-birth weight. At one point in the NICU her weight dipped down to a tiny 4 pounds, 13 ounces.
I have never cried so many times in my life. I was crying all the time, worried sick for my baby. But after about one week in the NICU her mysterious lesion was determined to not be spine related, and there was no other medical explanation other than maybe it was trauma from the birth, possibly her back was pushing up against a pelvic bone they thought. They had ran so many labs and tests on her that that was the only explanation they came up with. I was just relieved it wasn’t spinal related.
I was so happy when her weight went up again too. She was back to her birth weight of 5 pounds, 2 ounces by the time we left the hospital. She was little, the size of a premie baby, but she was considered “term” and normal otherwise. I was glad to put the NICU in my review mirror and to now focus on being a new Mom on my own. I was so thankful to all the NICU nurses who helped me learn how to take care of my fragile little girl. With their help I felt more confident that I could take her home, without all of the wires she had been hooked up to most of the time at the hospital.
The next chapter of our story was “new parenthood,” and this too was also incredibly hard. I became so incredibly sleep deprived that I was starting to unravel physically and emotionally. I had insomnia so bad that I began having auditory hallucinations. I was diagnosed with postpartum depression. I got help with medication while I was in the hospital so that I could get back on my feet.
Thankfully I had a lot of precautions put in place ahead of time, preparing for the possibility of postpartum depression. Thankfully the hospital helped me to get on the right medication to reduce the voices down. I am also talking with a therapist to help me process everything.
This is the point in my story where I want to stop and talk directly to my readers about the stigma of maternal mental health. If you have any concerns at all about your mental health during or after pregnancy, get help from a therapist, doctor, and even hospital if you need it. You can even call a crisis line or your health insurance’s nurse hotline. Reach out for help from people you trust. Do anything and everything to get help and do not keep it to yourself. The stronger your support system the more likely you will get back on your feet more quickly. There is no shame in getting help, because getting help will also benefit your baby. Don’t suffer in silence.
So as you can tell my pregnancy story, birth story, and new parent story is full of many trials along the way. But through all the chaos, I am so happy to have our little girl here with us today. She is growing well and is a normal weight. She is a nice chunky baby who loves to laugh at daddy’s funny faces and enjoys cuddling in mommy’s arms. My baby girl’s smile makes everything absolutely worth it.
In mid-December I finally had my long-awaited consultation with my new Reproductive Endocrinologist. It went really well, and I felt like I got a lot of good information. I waited over three months to speak with my new doctor because he is really in demand and booked out far on his schedule. The extra time I waited also allowed my body to heal and I am happy to report I currently have no scarring remaining from my last surgery. But with Asherman’s Syndrome the scarring could return at a later time, so it’s a kind of wait and see thing.
When I spoke with my new RE for our initial consultation, he let me know he had not received my medical records from either my local OBGYN or my previous fertility clinic. Dang it! I was worried this was going to happen. I don’t think I allowed enough time for my records to arrive to new doctor, since I filled out my ROI only one week before my consultation. I really should have completed those ROI’s sooner. Oh well, live and learn.
I created a last minute backup plan for this exact scenario of him saying, “We didn’t receive any of your records.” I created a master document of all of my fertility records. Yes, that’s right, I create one entire document of over four years of fertility records. It took a lot of time, but I really needed to do something like this sooner. I compiled all the records I had on hand. The whole point to doing this was to have a single go-to record so that I could easily search for information. After the document was done, all I had to do was type “ctrl+f” to search the document for specific keywords related to what I needed to find out, rather than wasting time flipping through hundreds of medical documents.
This method worked wonders during my consultation. Every question he had that I didn’t know off the top of my head, I was able to quickly find, therefore making my consultation much more productive. I was able to come up with the answer for everything he asked. It would have otherwise been really difficult to remember every single minute detail like “what dose of Leuprolide were you on in August 2018?” Because who the hell remembers that stuff?
So what did we actually discuss in our consultation? After I told him about my recent surgery to correct the scar tissue, as well as the discovery of my septate uterus, he was shocked to hear that I never had an HSG much earlier. He told me it should have been one of the first things they did in the beginning, not four years later. This is the second doctor who said the same thing. Clearly, there was a huge gap in my treatment early on that was missed with my previous RE. I was born with a septate uterus (increases risk of recurrent miscarriages), and the fact that no doctor out of a handful that I’ve seen tested me for this at all was honestly nothing short of negligent. But thankfully, the discovery of the septate uterus and the subsequent corrective surgery has put me on a much better path to hopefully have a successful pregnancy in the future.
After we talked about my septate uterus and scar tissue surgery that happened in October 2020, we started discussing my MTHFR gene mutation, which can cause issues with processing folate (needed during pregnancy). He had a very interesting take on my MTHFR gene mutation and whether they were related to the babies I lost due to trisomy disorders. He believes that the MTHFR gene mutation is related to inflammation in the body. I wish I could remember all the details of what he talked about, but it essentially boiled down to reducing the “expression” of the gene mutation by focusing on reducing inflammation.
The diet he recommended to help improve my egg quality and overall health is actually quite a strict diet. It is similar to Carnivore Keto, focusing on beef, bacon, butter, and Keto ice cream. He told me to avoid vegetables and not to do most exercises (except for yoga or gentle walking). He explained that vegetables have pesticides and toxins on them that can cause inflammation in our body. He said exercise that is moderate or high intensity “cooks the reproductive organs” and causes inflammation. He recommended in addition to the mostly meat diet he recommended that I also do intermittent fasting, eating one meal per day plus one snack. “No problemo” I thought to myself, because I have already been doing intermittent fasting fairly consistently these past few months. Can you see where this is heading? If not, I’ll talk about how my first week of this diet went in a minute.
But before I get into how this diet actually worked for me, let me talk about the fact that you can probably already tell that most of what he recommended to me is completely unorthodox compared to what most doctors tell you. Other doctors say, “Eat lots of fruits and vegetables, reduce meats, especially red meats. Get enough exercise.” So essentially everything my new RE was telling me was the polar opposite of everything I had ever known about being healthy in general, and opposite of what I had learned about improving fertility.
But during the consultation I kept a completely open mind, I listened to him emphasizing the importance of reducing inflammation and how his style of Keto could do this. It actually sounded good in theory. I mean, everything else I have tried hasn’t worked, so why not try what he is saying. Why not try the opposite of what all my other doctors have said? I really had nothing to lose. Also, it was really fascinating to listen to a completely different take on a fertility diet.
Love these two! They love to sit right next to me while I write.
He looked at my previous medication protocol, which included very high doses of stimulation medication during my IVF cycles. We are talking “maxed out” dosages here, yet I was still a low and slow responder, with few eggs being produced. He also had a different take on how I should do my next IVF round. So after two rounds of high-dose IVF medication, he suggested I instead do something called Mini IVF. This is one thing I have not tried yet. I’ve recently learned about this alternative medication protocol which focuses on a lower dosage of medication over a longer period of time. It’s meant to help women such as myself who are “poor responders” to high doses. The logic is it allows women who have poor egg quality or too few eggs, to have plenty of time to produce quality eggs at a slower rate. Granted, you generally produce less eggs, but the idea is that you will have better quality eggs. I mean, why not try it? It’s a totally new approach that is actually recommended for someone like me with low AMH and low egg counts during IVF. I heard about Mini IVF before, and I have heard good things, as well as some who also say it’s a waste of time, but I’ve mostly heard good things. I’m willing to try it, especially since the high doses did not work for me twice.
The last thing he asked me was “When are you thinking of doing IVF again?” Great question Doc. I thought about this question a lot before my consultation, which happened to be during the time I purposely chose to take a break from fertility treatment. I needed the break for my physical and emotional health. I was tired of dealing with the ups and downs of the hormonal medication as well as the constant stream of baby-on-the-brain thoughts. I needed a friggin’ break! But here I am in my consultation and I needed to answer his question. How do I answer this?
Well I discussed this question with my husband as well as with my mom, especially in regard to the current COVID pandemic. After much careful thought and consideration, I decided to postpone fertility treatment until after I get the COVID vaccine. So many factors went into this decision, and I feel it is the best choice for us. I am currently in the process of trying to sign up for the COVID vaccination (because my work offers it) but I am dealing with technical issues on their website. So as of right now I am “eligible” for the vaccine, but I am waiting to hear back about how to fix the scheduling issue. I’m hoping I will be able to get this vaccine soon.
So to answer my RE’s question of “When are you thinking of doing IVF again?” I let my him know I am waiting for the vaccine, then I will most likely be ready to start a round of Mini IVF. As far as my physical and emotional health have been going, I feel like I am in a much better space lately. I’ve lost some weight and emotionally I feel so much better being off of fertility medication. I feel re-centered and a lot happier. It’s a great feeling, and I don’t regret taking this break from fertility treatment. I feel “normal” and more content than I was before. Even when I attended my infertility group online, I can tell I feel a lot better because my updates I share with them are not based around “When am I going to have a baby?” or “Why is this happening to me?” or “Everyone else is having a baby, why not me?” All of those thoughts have been reduced significantly. They occasionally come up from time to time, but it’s a lot less.
Oh, and how was this new, radical diet that my doctor recommended to me? Well, it’s just not for me. I gave it the old college try, and did it for a week. But I found myself feeling ravenous which led me to be concerned I was going to start a binging cycle. I’ve heard that extreme forms of keto can lead some people to develop eating disorders like binging.I decided to take a step back and reevaluate what is reasonable for me. I think a more moderate approach is needed in my case. I decided a more doable option is to incorporate standard keto in my life for part of the week, and not carnivore keto every single day.
I’m still testing the keto waters, and trying to see how often I can realistically do this in a given week. Currently I am going to try 3-4 times per week on standard keto. I’m already doing intermittent fasting which is now really doable for me and I’m not having any issues with this. So I am going to keep doing intermittent fasting and add in Keto for part of the week. Hopefully this moderate approach will help reduce inflammation, like my doctor wants for me.I’m also adding in more exercise, just not super strenuous. I believe moderate exercise will probably be okay in my case because I do have some weight I need to lose. I will continue to focus on my overall health and hopefully the next time I write I will have had the COVID vaccine.
I was dreading doing the follow-up HSG test, mostly because of how painful the first one was. But there was no way around it, I had to have this HSG test to determine if my last surgery cleared all my uterine scarring. If any scarring remains that would mean I can’t move forward with IVF. So a lot was riding on this HSG test.
Post-Surgery Follow-up Appointments (HSG Test & Ultrasound)
I was praying this follow-up HSG test would not be as painful as the first one, but I really had no idea what to expect this second time around. I’ve heard from other women on the Asherman’s Syndrome forums that as long as you had a successful surgery and uterine scarring was properly removed, your pain level should be less with the second HSG test.
For this second HSG I openly talked with the nurse and doctor about how nervous I was, which I think helped because they were able to talk me through it. There was some pain, but it was brief, only for a few seconds. I’d say the level of pain this time was 4 out of 10 when she was putting in the catheter. I was so scared that that level of pain would increase that my anxiety started to go up.
I was so nervous about the process and remembered how painful the first HSG test was. My nerves now had me saying out loud, “I don’t think I can do this.” The doctor paused and asked me, “tell me what’s going on, what is the pain like? Is it like a pinching, a pressure, or cramping?” I thought about it for a few seconds, but then I realized that I wasn’t experiencing pain, it was pure anxiety. I’m glad she asked me questions about what the pain was like, because it made me realize it wasn’t pain, it was just anxiety. I told her that it wasn’t bad and that we could continue. I was able to complete the HSG test, feeling a bit rattled by my nerves but thankful I didn’t chicken out. So in the end, this second HSG test was in fact significantly less painful for me.
The radiologist seemed to think there was something on the ultrasound indicating scar tissue remaining, yet my nurse (calling on behalf of my doctor) said the exact opposite a few days later. She read the report to me, deciphering the medical jargon and said that the flow of the dye in my uterus indicates everything is clear and functioning correctly. I still plan to ask the doctor in New York (at my future IVF clinic) what he thinks. But it sounds like things are looking good and I am cleared to do IVF. Yay! Oh but wait, now I have to decide when to do IVF while COVID is going on.
Navigating Fertility Treatment During COVID-19
I decided to sit down with my husband and brainstorm our options for what we should do next, now that my scarring has been removed. In the past, my doctor said my best option was IVF, but that was before anyone knew about my septate uterus. Now that my septate uterus has been surgically corrected my odds of a successful pregnancy have gone up. “After surgery, between fifty to eighty percent of women with a history of recurrent miscarriage will go on to have a healthy future pregnancy” (Healthline, 2018). Pretty amazing right?
“So why don’t you try to conceive naturally again?” you may ask me. But I have a history of having Trisomy 15 and 16 miscarriages, indicative of an egg issue, not a uterus issue. My doctor in California believes that there are most likely multiple issues going on with me, including my septate uterus and my eggs most likely. Thankfully he fixed two issues, the uterine scarring and the septate uterus. But the egg issue is much more complicated. After asking multiple doctors the question “What is the best way for me to have a healthy baby with reduced risk of another miscarriage?” they all said, “IVF.” I’ve asked three different doctors this question, and they all explain their reasoning relating to my egg quality.
I told my husband, “The amount of money I’ve spent on four corrective surgeries after my last miscarriage from conceiving naturally, equals what we could have paid toward IVF instead.” Just looking at the numbers and my past history shows that IVF would actually be my best option, physically, emotionally, and financially. It just makes sense for us. But there are two hurdles left to deal with before we do IVF again, the money needed for IVF and now COVID.
At the moment I am considering holding off on pursuing IVF until I get the COVID vaccine, which seems to be anywhere from 3-6 months from now. I know my biological clock is ticking, but it’s so risky to travel right now for treatment. I think I can wait a few more months. Plus that will give me time to figure out funding IVF treatment, which will mostly likely include getting another job. Hopefully I can get a second job, it’s hard to say in this economy, we will see.
I still have my initial phone consultation with my new RE in New York. I think he will understand me postponing treatment for a bit, but I still want to hear what I can do in the meantime to prepare for treatment. I want to make sure all my ducks are in a row before I do IVF again. There’s the administrative ducks; medical history, insurance information, and ROIs. Then the physical ducks; a food plan for fertility, exercising, and supplements. Then of course the financial ducks. These are not all of the ducks that need to be in a row, but you get the idea. There’s a lot of moving parts to doing IVF. I’m hoping this upcoming consultation will get me going in the right direction at least.
So a few posts back I talked about how I found a lump in my breast. I found out recently that thankfully my mammogram and MRI show that it is not cancer. My doctor said, “We should still remove it, or at least do a biopsy, but it would be better to just remove it completely.” After careful thought and about a month to think it over, I decided to not do the biopsy or lumpectomy, at least not right now. I based my decision on the fact that the mammogram and MRI show no cancer as well as when my doctor said that the odds of it being cancer are less than 1%. If it’s less than 1% then why would I have surgery? I suppose she wants to be cautious and remove it out of an abundance of caution since I have a family history of breast cancer.
I’ve been on and off fertility medication a decent amount of this year, so that too could be contributing to the size of this lump. So I decided to continue monitoring the lump over these next few months. If it’s still hanging around, I will get a second opinion before I decide to do a biopsy or lumpectomy.
Fair warning, this post is not for the faint of heart. It might be triggering for some. So I’ll give you the option to skip ahead to the section titled “Next Steps.” As you’ve probably noticed, I decided to scale back my number of posts because I’ve been fairly busy lately. So instead of weekly posts, I’ve been doing monthly posts, at least for the time being. Thank you to everyone who has sent me well wishes, it means a lot to me.
In case you haven’t read my last post, here is a super brief summary of what has been going on. I was diagnosed with Asherman’s Syndrome and was told I would need to fly out of state to see a specialist for surgery. I did the surgery in California and the doctor discovered I also had a septate uterus, which he corrected in addition to correcting the scarring. He also put in a uterine balloon stent to prevent the reformation of scar tissue. I flew back home and needed to have the ballon stent removed within one week. The doctor back home who agreed to do it then decided to go on vacation, and I had to scramble to find a different doctor on short notice to do the procedure. Luckily I found a different doctor who was able to do it for me. Alright, now you are all caught up.
So here’s the part where I tell you again, if you don’t want to hear potentially triggering details please fast forward to the section titled “Next Steps.” Normally I don’t share things that are too overly detailed, or at least I don’t think I do. But I think there is value in sharing my experience for other women who have been diagnosed with Asherman’s Syndrome or a Septate Uterus and they are wanting to learn more about what to expect. Let me preface this with saying I’m not sure if the complications I experienced were due to the surgery on my uterine scarring or on my septate uterus, or maybe it was a combination of both. I don’t think I will ever know for sure.
If you are anything like me, you research what surgeries are going to be like and what happens afterwards. I would look up the basic medical information, to see if there was anything the doctor missed explaining. I’ve also gotten into the habit of looking up a few personal experiences of what to expect. I mostly see these personal experiences in infertility forums, blogs, or on YouTube channels. I saw a real mixed-bag of experiences regarding the uterine balloon stent surgery and what to expect after it’s removed. For me, it was painful having it removed, but at least it was quick. I thought the worst was behind me. But what happened next I really did not expect at all.
After the balloon stent was removed I had what seemed like a normal period for a few days. Not a big deal, my doctor told me I should expect this. Okay great, everything seemed on track. But slowly the bleeding started to increase over the next few days. It got to the point where I was getting really concerned. I was going through about 1.5 pads per hour, and I remembered from my previous miscarriages they told me if I go through one pad per hour for two hours I would need to go to the emergency room. At one point I went through one pad in two minutes. Not only was the amount now worrisome, but I was passing very large clots, some almost as large as my fist. But then it would slow down. I never did reach the “one pad per hour for two hours” rule they typically say, because it would start up, then slow down, then start up again. It was never two consecutive hours.
It looked and felt identical to a miscarriage. I did not expect this at all and I was starting to feel myself panic. Unfortunately it was the weekend and my doctor’s office was closed. I spoke with their answering service who told me they would contact my doctor but it might be upwards of one hour for them to return my call. As they were asking me questions about what was going on I started to cry, because I felt so overwhelmed and I didn’t know what was going to happen. I was scared about possibly passing out from blood loss because I was feeling light-headed and dizzy. I was also scared about the possibility of needing to go to the hospital during a COVID outbreak in my city. The answering service lady was nice and helped to calm me down a little bit.
I somehow managed to calm myself down and decided to lie down, hoping this would slow the bleeding, which actually worked somewhat. I chose to do this instead of going to the emergency room because I wasn’t quite at the one pad per hour timeframe, it was more like one pad per 1.5 hours. I chose to do this because I was waiting for my doctor to call back and I felt it was not severe enough to go to the emergency room yet. Please remember this is my own personal experience and if you are going through something similar you MUST talk with your doctor for guidance.
I tried to stay as still as possible, avoiding walking around at all. After about 45 minutes of waiting, the on-call doctor called me. She asked if I was on estrogen and I told her yes. Estrogen is commonly prescribed after uterine balloon stent removal to help control bleeding, but clearly it wasn’t working for me. She advised me to start my progesterone pills right away, instead of the original plan which would have had me starting them about 3.5 weeks from then. So I would need to start the progesterone a lot earlier, in hopes to slow down the bleeding. She also advised me to take 600mg of Ibuprofen, drink plenty of water, and to rest.
Thankfully the pharmacy was able to get my progesterone ready really quickly. My husband picked up the progesterone for me and I took it as soon as he got back. I think the combination of ibuprofen and progesterone was what really helped. It took a while but I was starting to feel better. I bled for 13 days after the balloon stent was removed, even after being placed on both progesterone and estrogen to slow the bleeding.
This whole situation was very similar to my first miscarriage, so it brought up a lot of emotions for me. I would not say it was necessarily PTSD I was experiencing this time, but it was definitely a feeling of being overwhelmed. I managed to control that panicky feeling when I lied down and took some deep breaths. I think had I not done that it would have turned into a panic attack. I think another reason it was emotional for me was that it was totally unexpected. I had done plenty of research on what happens after the uterine balloon stent is removed and even asked my doctor, and no one described anything like what I was experiencing.
I think it will take several cycles for me to get back to normal after all of that. But even though it was really difficult for me, I am thankful it wasn’t any worse. I could have passed out from the blood loss or been told to go to the emergency room during the COVID outbreak. Even though the whole situation sucked and caused me a lot of stress and pain, I am thankful I got the help I needed just in time. I think had I not got help from my doctor when I did it most likely would have gotten worse and ended up needing to go to the ER.
I now need to do a follow-up HSG and pelvic ultrasound. Basically they are going to be checking to make sure everything looks good and that there is no more scarring. From what I understand the follow-up HSG is anywhere from Cycle Day 5-11 days, and the pelvic ultrasound is Cycle Day 13-15. All of this is done in the cycle that takes place 30 days after your surgery when the balloon stent was put in, so it’s not the cycle that starts after it is removed. This way it gives you over a month to heal up before they do the follow up HSG or pelvic ultrasound.
Recently I finished up my 30 days of estrogen and my progesterone. They told me to expect my cycle to start up once I stop the medicine. So far everything seems normal. I am scheduled for my follow-up HSG procedure where they will check to see if all of my scarring is gone and whether I will need another surgery or not. My doctor in California said to do this day 5-7 of my cycle but here in Alaska they are telling me they do it day 7-11. They also said they only have availability on day 11 because they do HSG tests on specific days of the week. So I am scheduled to do mine on day 11. I will also need to do a pelvic ultrasound day 13-15, which I still need to schedule.
I was prescribed to take an antibiotic the day before, the day of, and the day after my HSG test. I believe it’s to help prevent infection from the procedure. I decided to make an appointment with an outpatient radiologist office instead of radiology at the hospital, which was where I went last time. I’m really trying to avoid doing anything at the hospital unless necessary because of COVID. I actually requested my doctor not refer me to the hospital for the HSG and they were happy to refer me to an outpatient radiologist instead.
December 17th I have a phone consultation with the IVF clinic in New York. I don’t know whether he will recommend I wait a few cycles before doing IVF because of the surgery I just had. He may want my body to heal up more. Last time I checked New York has a 14-day quarantine upon arrival for certain states with high COVID numbers, and my state (Alaska) is one of them. So that means I would have to sit in a hotel for 14 days straight doing nothing before I could even get IVF treatment, unless there is some medical exemption. But I kind of doubt there is a medical exemption available for fertility patients. I could be wrong though, I’ll have to do more research. If I need to quarantine upon arrival that is a lot of money I would need to pay to sit in a hotel and do nothing.
Basically I will be establishing care with the clinic in New York by phone. In all actuality, now is really not the best time to go down. I’m concerned about getting COVID, because I have two preexisting conditions, high blood pressure and I am technically obese. I’ve been working really hard to lose weight. I’ve lost some already but I have a ways to go. I am almost out of the “obese” range and into the “overweight range.” It would be awesome if I could get to a healthy weight and not need high blood pressure pills anymore. Not to mention I am concerned about being overweight during IVF treatment and the impact it would have on my egg quality.
So there’s the health concerns, and on top of that I don’t have enough money saved up. So I will need to figure out another way to pay for it, most likely I will need to get a loan or use credit for part of the cost. I’m looking into a second job, well technically it would be a third job. I have two jobs now but they are part-time and the hours vary. The clinic in New York can do a monthly payment plan for their portion of the cost but I would need to pay for the medication up front.
Realistically speaking, I may not be able to IVF for a while. At this point I really don’t know when. I’m hoping the doctor can give me some information on his end about whether I would need to quarantine or not. He may even advise me to wait until a vaccine is out. At this point I truly have no idea when I can go. My husband has some time off planned early next year, so maybe I’ll ask about the doctor’s availability then. But he’s a pretty in-demand doctor, it took me 3.5 months to get a phone consultation with him, so it might be even longer to actually do the egg retrieval.
I’m leaning more towards doing only an egg retrieval at first, and then sometime later the actual embryo transfer. That way I have more time to get to healthy weight, and I really don’t want the added stress of being pregnant during COVID if at all possible. With embryo banking I can wait until the right time before actually getting pregnant. But then again my doctor may say something to the effect of “you’re not getting any younger, you should just do it now.” It will be my first phone consultation with him, so I don’t know if he will be gung-ho about just starting treatment or if he will be more cautious and have me wait.
Have you postponed fertility treatment during COVID? If so, when do you plan to start again? After a certain amount of time, after a vaccine, etc.? If you have decided to continue treatment during the pandemic what ways are you being safe? I’m curious to hear your opinions. Stay safe everyone!
Oh my, do we have a lot of catching up to do! In my previous post I talked about how I did an HSG test for the first time. I hated it. But I apparently needed it more than I realized. The images and results determined I did in fact have Asherman’s Syndrome. The series of events that took place afterwards included a flurry of phone calls and emails to multiple doctors to coordinate treatment, as well as a lot of research on my part. Within about one week of diagnosis, I was on a plane headed out for surgery in California. I found out later there was even more to the story of what was going on with me.
Why I Fired My Previous Fertility Team
I decided to seek a second opinion in addition to my current OBGYN. Why did I seek a second opinion? I’ve done a lot of research online about my diagnoses and I discovered I was not tested for a lot of things over the years, including a basic karyotype test, which I will talk about later.
I learned there were substantial gaps in my treatment. So I fired my previous OBGYN from earlier this year, as well as my previous out-of-state reproductive endocrinologist. Not only was I continuing to have miscarriage after miscarriage but I also had two rounds of IVF with no success. Not to mention a lot of missing diagnostic tests that were never suggested to me over the years. One of those tests included an HSG test, which I learned is a pretty routine test to take with recurrent miscarriages but it was never done on me. I just recently learned new information about this HSG test that was shocking and could completely change my future treatment plans. I’ll get more into that in a bit.
I was told over the years by several doctors “It’s just bad luck” and “keep trying.” But if you have recurrent miscarriages, this type of advice is at the very least negligent and at worst it can be deadly. I’ve heard of stories where women follow this advice and experience major health risks when they miscarry and hemorrhage to the point of needing emergency care, only to find out that they were missing vital diagnostic tests that could have potentially prevented the entire scenario with proper treatment. I have a new diagnosis I will talk about in a bit, one that was missed by doctors who told me to “keep trying.”
Several months ago I decided to seek diagnostic testing from two new OBGYNs simultaneously, mostly because my trust in OBGYNs and fertility doctors has taken a nosedive. I believe that in my complex fertility situation, I needed to move on and try something different with a new fertility team. I’m still deciding which one I will make my primary OBGYN. But for the time being two brains are better than one right? I will probably decide on who I want to stick with after a few visits so I can compare who I feel has the best individualized treatment plan.
I also fired my out-of-state reproductive endocrinologist for different reasons. They never requested an HSG test, therefore I never knew I had Asherman’s Syndrome, then they implanted my one and only embryo (PGS tested normal) but it failed to implant and I realized afterward they didn’t even test my endometrium lining the day of my transfer to see if it was thick enough for implantation. The previous week my lining was too thin and they said, “hopefully it will be thick enough by transfer day.” But like I said, I learned after the fact they didn’t even measure it. These were just a few of the reasons I decided to kick them to the curb.
I am currently seeing a new doctor in California who specializes in corrective surgery for Asherman Syndrome scarring in the uterus. This A-listed doctor who comes highly recommended is unfortunately retiring the end of this month. I feel like I finally found a real gem amongst all the other dirt out there, but at the very least he has been able to point me into a new direction for treatment. So now I will need to find a different reproductive endocrinologist if I want to continue with IVF treatment.
Three months ago I set up a phone consultation with an IVF clinic in New York. I wanted a clinic that had great reviews, quality care, innovated treatment techniques, and that was more affordable. Cost was one of the biggest concerns for me, but I also sought out this clinic because they actually consider reproductive immunological issues during treatment. My past doctors either told me they don’t have the capability to test for reproductive immunological issues, didn’t know who did test for it, or they were completely dismissive of the fact that I wanted to do it at all. None of them ever followed up with a referral for me, I had to do that research on my own. Even though reproductive immunology is controversial, why would a doctor not even consider the realm of possibility that my body may be rejecting embryos due to immunological issues? I’ve had six miscarriages and they all end at about six weeks and a few days, I would think a doctor may ask themselves, “Hmm…I wonder why the embryo continuously stops growing around the same time? Maybe her body is rejecting the baby due to immunological issues.” I’ve seen six different providers over 4.5 years and not one of them did immunological testing, even if just to rule it out.
But this IVF clinic in New York I’d like to go to seems much more innovative compared to the more run of the mill treatment I received in the past. The fact that some of their medication protocols are specific to women with immunological issues gives me hope. Even if I can’t afford the whole battery of reproductive immunological tests, I want to rule out some of the more basic immunological issues at the very least. I deserve individualized treatment, not cookie cutter plans that continuously fail. You also deserve the best care possible with a doctor who will actually listen to you, does the proper diagnostic testing, and comes up with a treatment plan based on previous scientific studies similar to your own diagnosis. I’ll be doing a more in-depth post on when you should potentially fire your provider and seek out a new one.
Karyotype Test Results
I’m glad I found two new OBGYNs willing to work with me, because they both thought of different tests I was missing. While the first OBGYN suggested I do an HSG test the other said I should do a karyotype test. A karyotype test is a simple blood test. I’m not sure if it was because I was located in Alaska, or if it was the usual process, but they said they wouldn’t have my results for up to three weeks. They had to process my test out of state. I can’t recall if she said it was being processed at the Mayo Clinic or the Cleveland Clinic.
I got the good news that my karyotype test results came back normal, my doctor was able to officially rule out a balanced translocation. But I found out afterwards that my husband could also take a karyotype test too. I’ll see where his head is at with this. I want to respect the fact that he really needed a break from treatment, so something like this could be done maybe in a few months if he wanted to. He understands that although I am not actively pursuing IVF right now, I am most definitely in the phase of doing any diagnostic workups.
In the not so distant future I can restart IVF again, armed with more information and possibly a better outcome. I am also mentally preparing myself for the possibility of getting these workups to determine whether and when I should move on from trying to have a biological child and instead look into other options. Knowledge is power, and I feel all these tests will help me decide what is best for building my family.
Do some of your own research on karyotype tests to find out if you might benefit from taking this test. If you’ve had recurrent miscarriages your doctor may recommend a karyotype test on you and your partner. In my particular case, they wanted to rule out whether I had a balanced translocation which could have possibly explained why I had miscarriages due to the babies having a chromosomal abnormality. Although my chromosomes were determined to be normal from this karyotype test, I still had miscarriages due to Trisomy 15 and 16 (both due to maternal origin). We also had a triploidy miscarriage (due to paternal origin). From what I understand, a karyotype test is a type of genetic test that looks at your chromosomes.
Remember, just because your individual karyotype test results come back normal, this does not mean that your male partner does not have an abnormality. Ask your male partner to get tested as well. Like I said before, my husband asked for a break from fertility stuff for a bit, which is fine because I have at least a dozen other tests I can do on my own in the meantime.
Asherman’s Syndrome + Septate Uterus Diagnoses & Surgery
In my last post I talked about how read my HSG test report and saw he word synechiae. I googled the word synechiae and realized there was an actual name and diagnosis for what was happening to me. Asherman’s Syndrome. In a nutshell, Asherman’s Syndrome is when you have damage to your uterus to the point where scarring forms. If the scarring is bad enough it can close up the cervix entirely, backing up the menstrual flow with nowhere to go and causing potential for major complications. I’ve heard of some women who didn’t think much of their Asherman’s diagnosis, unaware of the importance of getting it treated, and they landed in the emergency room with immense pain. They would find out later the reason they weren’t having a period was their scarring literally blocked off the natural menstrual cycle. It’s a worse-case-scenario kind of situation, but given my bad luck (reproductively speaking), I did not want to chance it by not doing anything to treat it.
I sat there in my appointment with my new OBGYN who was talking about how severe my scarring was and how I would need surgery. She felt she was unable to help me, due to it being such a complicated and delicate procedure, on top of the fact that she had never performed this procedure before. “I don’t think what I would do would be any different from what Dr. X did.” Dr. X being the one she believed actually caused the damage. She thought it would be best if I see a specialist and avoid repeating another surgery that could make my scarring worse.
I asked who she would suggest I see to repair the scarring. She named a doctor from the fertility clinic out-of-state that I had zero luck with after two rounds of IVF. Nope, not happening. I was not going back to the clinic I felt like had several major oversights with my treatment. I have more information now about things that they failed to help me with that they should have done earlier. Some of those things included an HSG test, karyotype test, and a basic recurrent pregnancy loss panel that should have been done on me years ago. She had no other suggestions for any other specialist who could help me, so I decided to take matters into my own hands.
I joined several Asherman’s Syndrome groups online to learn more and to gain access to resources. This was actually how I found my doctor who ended up performing the surgery. I found a post where someone asked, “Which A-list Asherman’s Syndrome specialist would you recommend?” I was amazed at how many people responded, and most of them kept repeating over and over the same two doctor’s names. There were a few others who mentioned some of the lesser known doctors that helped them. So I narrowed it down to two doctors.
I chose the doctor whose technique included using a balloon stent to help prevent scarring from reforming, therefore reducing the number of subsequent surgeries. I called his office and found out he was retiring by the end of the month, so I had to quickly make arrangements if I wanted the opportunity of getting his help. He was so highly regarded in the Asherman’s community.
After a flurry of phone calls, emails, and lots of paperwork I somehow managed to get everything set up and I was on the plane to California for my treatment in just over one week. I essentially went from just learning about my new diagnosis one week, to getting corrective surgery from one of the top doctors the next. It’s pretty unheard of when it comes to reproductive medicine to have such a quick turnaround with treatment time. It was headspinningly fast, yet also really satisfying knowing I was getting things done so quickly, so I could hopefully move on with my life.
Before my surgery my doctor sat down with me after looking at my HSG images and said, “This doesn’t actually look like severe scarring like the initial report says they found. I mean there is some scarring I’m seeing, but not severe like they are saying. If you look here, it should be horizontal, but your uterus is like this…” he held a piece of paper at a sharp diagonal angle across the image of my uterus. “This looks like a congenital disorder, a septate uterus,” he explained to me that a septate uterus is a birth defect and showed me how my uterus was misshaped, which can affect my ability to get and stay pregnant. This could be a major reason why I keep miscarrying.
He was the very first doctor to ever tell me that I may have a birth defect in my uterus. I was shocked to hear this news. I was so shocked I didn’t know what to say other than, “Really?” He said again, “We won’t know for sure if that’s what it is until we are in there and see.” During the surgery I was put under general anesthesia, and when I woke up I got a lot more information on what was going on.
He told me he removed the uterine scarring and inserted the uterine balloon stent to help prevent the scarring from reforming. I would need to have the balloon in for one week, which isn’t that long compared to other times I’ve heard these can be in for several weeks. He also said that I did in fact have a septate uterus and he was able to easily correct this birth defect during the surgery. So basically this surgery was like a three-for-one kind of deal; 1) remove the scarring, 2) reduce or prevent future scarring, and 3) correct the septate uterus. No wonder this doctor is so highly regarded.
I think his well-trained eye with decades of experience was easily able to spot my septate uterus, whereas none of my local medical team were able to do this over the nearly five years I’ve been seeking treatment. I’m so thankful I was able to get into seeing him, literally the week before he retired. I was super time-crunched but everything worked out for the best.
If someone were to ask me, “What does it feel like to have a uterine balloon stent in?” I would say, “It feels like you are walking around with a blown-up balloon inside your uterus.” No joke, that’s exactly how it feels. I would say I was consciously aware of it about 95% of my waking day because I could feel and sense it that often. It occasionally would feel achy and painful on rare occasions, but only briefly. But then again that could have been pain from the several other things that had been performed on me during that surgery.
I avoided bending over to pick up anything, because I was afraid of the stem popping out. My doctor in California said, “If the stem pops out, just shove it back in,” he said it so matter-of-factly. But I’m sure he saw the terror in my eyes and then he followed it with, “It’s not that big a deal, it happens sometimes.” Needless to say, I avoided bending over for fear of needing to “shove it back in there.” You never realize how often you need to pick things up until you are trying to avoid bending over. Thankfully I had a gripper tool I used to pick up anything I dropped on the floor around the house.
After one week, I got the balloon stent removed by my second-opinion OBGYN back in Alaska. Yes, I was seeing two OBGYN’s locally, trying to determine which one to go with regularly. The first one told me she would remove my balloon stent but when I happened to call for another reason and asked if she was still good to go with the procedure I was told she was “on vacation for two weeks.” No one called me from their office to tell me she could not do it anymore. To top it off they offered ZERO solutions to help me that day. I called them several times afterward and still they were of no help. I was left high and dry with no solution on who would remove my balloon stent that had to come out at a very specific time.
So I had to scramble to coordinate another doctor to remove it. Thank god I was seeing a second backup OBGYN at a different clinic. When you deal with all the crap I’ve had to over the years with fertility issues, it’s good to have a backup doctor, and this is a prime example of why. If I did not have a backup doctor I would likely still be stuck with the uterine balloon stent inside me, beyond the recommended time the doctor in California told me it should be in.
It wasn’t until three days afterward the first clinic (with the doctor who bailed on me) called me back to say they had someone else arranged to take it out, but I told them, “I made arrangements with another clinic that was actually able to confirm they could take the balloon stent out at the proper time.” I didn’t say it with anger, I simply said it with finality because this situation was an excellent reason to fire them too. It’s completely unacceptable to leave your patients high and dry like that. At the very least, arrange a substitute doctor to perform your procedures that are time-sensitive.
The backup OBGYN who performed the balloon stent removal was very nice and incredibly knowledgeable about Alaska and why we don’t have a reproductive endocrinologist up here. She essentially said that she thinks the reason is that there isn’t a big enough population in Alaska to make it fiscally doable for an RE to be in Alaska and to do any IVF treatment. The lower the population the less likely an RE will be able to sustain their practice. The way she described it made a lot of sense to me. She also mentioned there used to be an RE in Alaska but she was up here only by happenstance, because her husband’s job was relocated in Alaska and she happened to be trained as an RE already. This RE passed on her knowledge and expertise to the clinic I ended up seeing to remove my balloon stent. I was starting to feel like I was finally in the right hands.
Unfortunately the actual removal of the balloon stent was quite painful, but it only lasted for a few seconds. The level of pain I experienced was right on par with how bad the HSG was for me, except the HSG pain was going on for much longer. I was so happy to have that balloon out of me. Having it removed felt like a new chapter of my life in a way. The scarring was gone and the birth defect in my uterus was corrected from my recent surgery. It felt like a new lease on life. It may not be the end-all-be-all to my fertility issues, but it certainly got rid of several major obstacles.
Also, while I was down in California I was able to do an actual recurrent pregnancy loss panel like he had recommended. I had my blood drawn for these tests. I had seventeen, yes seventeen vials of blood taken from me that day. The lab worker suggested I sit in the lobby for a bit afterwards and the front desk guy brought me water so I wouldn’t pass out. That’s a lot of blood! I got tested for various things like Lupus, Natural Killer cells, prolactin, and a bunch of other things. I’m glad I was able to do some immunological tests, although it’s not as extensive as a full reproductive immunological workup. I did some research on that and I don’t have near enough money to afford that.
So what are my next steps now that my balloon stent is removed? Well I need to continue taking estrogen for 30 days after surgery, then progesterone pills for the last of those 5 days. If I understand it correctly, the estrogen helps to somehow prevent the recurrence of scar tissue developing, possibly due to keeping the endometrial lining more thin.
After I’m done with the medicine, and after my cycle restarts I’ll need to do a repeat HSG and also a pelvic ultrasound to confirm that everything is looking good and no scarring has reformed. On the off chance that scarring does reoccur, my California doctor who recently retired, suggested a doctor on the East Coast for me. He is also a specialist treating Asherman’s Syndrome. So I have him in mind, just in case it happens again. If everything looks good, yours truly will be arranging treatment at a new clinic for my next IVF cycle in New York.
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.
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.
As much as I wanted to dive right into fertility treatments after my recent FET did not work, it just isn’t realistic for us. We are physically, emotionally, and financially tapped out. So we are taking this time to heal, recenter, and reevaluate. I want to use this time wisely. I’d like to try treatments again in the future, as well as possibly fostering or adopting. But right now we really need to take a break.
Have you taken a break from trying to have a baby? What advice would you give to someone considering taking a break? What helped you the most during that time? Please comment below.
Sometimes you just hit a wall. You’ve exhausted every option available to you, and you have to rethink how you are doing things. In my last post I talked about how our recent frozen embryo transfer did not work. The embryo did not implant, so technically I did not become pregnant. It was very sad for both of us. Over time I’ve become accustomed to plans not working and loss. I’ve found that it stings less and less over time, but the disappointment is still there. After seeing how this was affecting my husband, I realized the best thing for both of us is to take a break.
Initially he asked for a month-long break from treatments, certainly reasonable and doable. Well it’s been one month since my embryo transfer, and I think we need a longer break. The decision to wait longer is mostly a financial one. We just don’t have the money for treatments or any family building right now. We’ve put all our eggs in one basket with this fertility treatment (pun intended). But I realized I also put us on the back-burner. I wanted to share a list of things we sacrificed in order to pursue treatments.
Things we put on pause for fertility treatment:
Getting a house (living in a neighborhood that isn’t always safe)
Finishing college degree (I have about 1.5 years left on second degree)
Buying a car
Rarely buying clothes (my home attire consists of an obscene amount of holey clothes)
Saying “no” to vacations because “I might be pregnant by then” or “I’m pregnant and don’t want to risk another miscarriage by traveling” and of course “I can’t go on vacation, I don’t have the money.”
Weight loss goals out the window when doing fertility treatments. Fertility treatment = Bloats McGoats
I could go on and on about how planning and saving up for treatment impacts literally every facet of my life. If you’ve been on treatments, you know exactly what I’m talking about. I think that building a family, no matter how you do it (treatments, foster-to-adopt, adopt, etc.) can take so much out of us if we let it.
But what if we flip that idea on its head? What if instead of believing we are losing something or missing out on something, we could instead view it as something we are gaining? I’ve experienced a lot of loss through miscarriages and IVF rounds that did not work. If you were to tell me right after a miscarriage that I am ‘gaining something’ I would not have been very happy with you. But if I pull back and look at the big picture of what I’ve learned over these years, I truly have learned a lot.
The biggest thing I’ve learned is building resilience. I’ve learned and accepted the grieving process after each loss. With my first miscarriage that happened years ago, I laid in bed for two weeks straight. Other than using the restroom and occasionally getting food, I was tethered to that bed. I listened to a lot of music that spoke to my grief. I cried more than I have ever cried in my life. I cried so much that I physically ran out of tears and could not cry anymore, which I did not even know that was possible. It was shocking, devastating, and heartbreaking.
But when I had more miscarriages, the emotional pain lessened over time. You become used to the possibility that it might not work. You learn to become realistic. I still feel sad when it doesn’t work out, but nowhere near what it was like with my first loss. That first loss was debilitating.
I think a realistic approach to treatments is to hope for the best and plan for the worst. I don’t believe in the whole “don’t get your hopes up” idea. If you are feeling hopeful, despite the odds, let yourself fully feel it. You can be simultaneously hopeful and planning ahead if things don’t work out. In fact, that is how I’ve gotten through all these years of trying. I allowed myself to feel happy and hopeful when things were looking good and I also mentally prepared myself for the possibility that things wouldn’t work out.
I had a plan in place to prepare for a loss or round of treatment that didn’t work. I asked myself, “What are some healthy coping skills I can do to build myself back up if I do lose this baby (or if my treatment doesn’t work)?” I thought back to other times in my life when things were difficult and what helped me then. I wrote down my plan so that it was tangible and I could refer back to it. I would talk about my plan for healthy coping with my husband. My plan became my safety net as well as what helped get me back on my feet. Over time and with practice my safety net became stronger and I got back on my feet a little quicker each time. I highly recommend creating a go-to healthy coping skills list for yourself. No matter what loss you experience in life, this can really help you build resilience.
I wanted to share a book I started reading recently called Option B: Facing Adversity, Building Resilience, and Finding Joy by Sheryl Sandberg. It’s all about loss, grief, and building resilience. I think it is really well written and the lessons learned can also be applied to the grieving process of failed fertility treatments, miscarriages, stillbirth, infant loss, etc. If you are experiencing a loss related to family building, I highly recommend seeking out books not just on that subject, but on the grieving process in general. There’s a limited number of books that talk about the grieving process during miscarriage, stillbirth, and infant loss. So I’m thankful that I’ve decided to expand out my resources beyond the scope of miscarriage grief, because learning about other types of grief opened up so many resources for me. I’m finding that learning about grief on a broader scale has opened my eyes to many other voices and lessons on how to build resilience. Hearing peoples’ stories about grief from losing a spouse, an older child, or being diagnosed with cancer has helped me to learn what they did to stay strong and become resilient in time.
So, circling back to my original thoughts, this break from my fertility treatment is all about reconnecting to who I am as an individual and who we are as a couple. I plan on doing a post in the future, summarizing my break from fertility treatment. That future post will probably be related to more practical ways to navigate your break from treatment. For now, I will be sharing tid-bits along the way of things I’ve learned.
What have I been up to lately now that I am taking a break from treatment? Recently I went on a camping trip with my husband. It was an amazing trip. We didn’t go anywhere new, we’ve been camping there a handful of times. But this time I was able to take my mind off treatment and focus on us. I really do feel like it helped reconnect us. It was a lot of fun and while I was there it felt as if we rekindled a part of ourselves that was there before trying to have a baby.
Stoked! Kurtis starting the bonfire for our recent camping trip. Camping is one of our favorite hobbies.
I’ve also been focusing on trying to lose weight and get healthier. I’ve been doing intermittent fasting and lost almost 9 pounds this month. I still have a ways to go but it’s a good start. I’ve been cleaning the house more and trying to get more organized. We’ve been doing more hiking and walking. I’ve been trying to move more in general. I created an Instagram account dedicated to weight loss, self-development, and goal setting. You can follow my account @goalsandconfetti on Instagram. If you haven’t already, you can also follow me at @hopingforbabyblog.
I plan on taking this time to review more books, shows, podcasts, ect. about not only fertility treatment but also other family building options. I’ll be posting my reviews soon on this site, so be looking out for those. There are so many great resources on family building out there. I plan on updating my Resources & Products page for you all too.
We’ve invested so much time, money, energy, and our hearts into trying to have a baby. This journey is certainly not for the faint of heart. Many of us in the infertility community refer to each other as “warriors.” I know some people disagree with this and say, “How can I call myself a warrior when I cry?” or they say “I feel so weak, and not strong like a warrior.” You may not see it in yourself, but we can see it in you. You are a warrior and you are strong. I am inspired when I see other people overcoming infertility, because it gives me hope. Later in this post I will talk about a couple who truly are the definition of infertility warriors and you may find their story as uplifting as I did.
I believe there are different ways to “overcome” infertility. This could mean building a family with biological, foster, or adopted children. It could also mean deciding to live child-free. But I think “overcoming” infertility is more about reaching a place of contentment. In all honesty, this is still a work in progress for me, and that’s okay too. You may also be at the same stage I am, a kind of in-between place. You can read more about my thoughts on overcoming infertility in my post HopingForBaby.com’s Beginnings.
If you read my previous post The Two Week Wait, you’ll know I chose not to take a home pregnancy test during this time. I decided to wait for the official results to come in from my quantitative hCG test I took at the doctors office. I had my blood drawn the day my clinic said I should know for sure whether I am pregnant or not.
I went in at 8:00am for my test, went home, and watched some TV while I waited. I started watching Miss Meadows, a kind of offbeat movie with Kill Bill vibes. I decided to check my email about halfway through the movie, and there it was, my results. “Your Quest Diagnostics Lab Results are Now Available” the subject of the email said. I hesitated briefly and wondered if I should click on it, or wait to hear directly from my clinic. I decided to go ahead and open the email. Below is my test result:
HCG shows negative pregnancy test result.
You can see that my result was less than 1 mIU/mL, and it says that anything less than 5 mIU/mL means I’m not pregnant. I suppose I was in denial initially. Maybe this was a mistake. I’m not sure how many women take a home pregnancy test after they receive official results from their doctor’s office, but apparently I am one of them. I had left over pregnancy test strips I ordered in bulk from Amazon a while back. I pulled one out and waited three minutes to see the results. It too was also negative. I feel like I needed this visual to make it more tangible and to help me process the news.
I was feeling kind of numb from it all. I just went back to watching my movie. I waited until Kurtis came home on his lunch hour before I told him that we weren’t pregnant. I think he was also in denial too at first. I told him my clinic hadn’t called me yet, so he was hoping they may say something different on the phone. But I told him about the home pregnancy test as well as the email. We were both lying down in the bedroom and we just held each other for a while. He asked that I let him know what the clinic says when they call, then he went back to work.
It wasn’t until several hours later that my clinic called me. I listened to my nurse tell me that she was sorry it hadn’t worked out. She asked if we were thinking of doing another round of IVF in the future. I told her, “I’m not sure.” I could have asked any one of the questions that were on my mind about why this happened, but in the moment it was just too hard. I kept the phone call brief and thanked her for letting me know. When I feel up to it I will follow up with the clinic about what we can do to improve our odds, if at all, if we choose to do another round. I feel like I need that closure, at least closure from this particular clinic because I know we will not be seeking further treatment with them. If we do treatment in the future it will be with a different clinic.
Taking a Break
The third day after finding out we weren’t pregnant was very difficult for me. What made it so hard was the conversation I had with my husband that morning. I started talking about how I wanted to ask my doctor about a different treatment plan.
He said, “At what point do we decide to stop?”
I answered him by saying, “I feel like there are gaps in my treatment. They missed the fact that I had the MTHFR gene mutation for four years, I feel like there may be other tests I might need. I’ve heard about immunological tests. It could be that I need a certain medicine I haven’t tried yet. I want to find out more. I feel like there are other things we can do. I don’t want to stop now. I was just about to see a new doctor here soon.”
Then he said, “I understand you have low ovarian reserve and you don’t have much time left. But I need to take a break from it all. I can’t handle it emotionally or financially right now.”
He stood up, and took our dog outside. I felt like I had the wind knocked out of me. I walked to the bedroom and holed up in there for most of the day, just laying in bed in the dark. I watched one movie. I cried a couple times. It was the first time I had actually cried after the bad news. Went back to laying there in the dark staring at the ceiling. I had so many thoughts come to me during this time.
It took me most of the day to process my own emotions before I started considering his perspective.This was the first time he talked about how it was emotionally affecting him. I know that it has affected him financially. Although he isn’t paying for the treatment or medication, he has been covering most of the other bills. He’s mentioned his worries about money before.
The more I thought about it there were subtle signs before that he was feeling the loss like I was. When I was holed up in the dark bedroom he had come in at one point and plopped on the bed face down right next to me. He asked me if I wanted to go for a walk or something. I told him maybe. He mumbled something into the bed and just layed there for a bit. In hindsight his body language and everything about that moment seemed to be an expression of sadness.
Then I remembered the day before when he called out from work. I asked him if he was sick or if he was taking a personal day. He said, “A little of both.” It didn’t click with me in the moment that maybe the stress of the bad news may have been a factor with how he was feeling. He’s not one to talk about his emotions.
He even said it himself, “I can’t handle it emotionally.” Why didn’t I actually listen to what he was saying then? After I got some rest I talked with him about it the next day. He said he was wanting to take a break of maybe one month. This was entirely different from what I expected him to say. Just based on what he was telling me the day before I figured he would say “one year.” I told him that one month is definitely reasonable.
I mentioned I will still plan on meeting my new doctor and see about taking any tests, but I agreed to no fertility treatment procedures for the month. I also told him, “I’ll try not to talk about treatment plans or anything unless you ask me what’s going on.” He agreed that sounded good. He needs a breather from all of this, and I get it now.
Range of Emotions
Over these past few days since I got the negative result I’ve experienced a range of emotions. I was feeling very numb the first day. The second day I was angry, and all my anger was directed towards the clinic. I felt like maybe they didn’t provide me with the care I needed as an individual. But I didn’t actually cry at all until three days after the news. It wasn’t an all consuming kind of cry either, it was more like a couple moments of crying. The third day is when I felt the most “heavy” emotions. I was basically in bed the entire day, just laying there in the dark. I had a million thoughts rolling through my head the entire day. It was a very difficult day mostly because that morning Kurtis told me he wanted a break from treatment. After I took the day to process my own emotions about the loss, I was also able to realize that this was also emotional for him as well. I was starting to see from his perspective when I thought this wasn’t emotional for him at all. The fourth day my primary emotion was that of hope. He and I had talked things out and agreed to take a short break from treatments and heal from this.
Several months ago I thought about the possibility that my frozen embryo transfer may not work. This filled me with so much dread at the time. I was worried what that would mean for us as a couple. I imagined it would break me. I told my friend that I would probably be drinking a lot of wine to cope. But now that I’m here, it doesn’t feel as bad as I anticipated. And I made the conscious decision not to buy any wine, because alcohol is a depressant and that’s the last thing I need right now.
I’ve been spending time with Kurtis and just taking it easy. We watched movies together at home, ones that are uplifting. I started taking the dog out for walks more, instead of Kurtis doing most of it like he has the past few days. I listened to music. I did some writing. I called my Mom. I received support from friends. I’m trying to do as many healthy coping skills as possible, I think because of that I’ve been able to accept this a little better.
Message of Support from Another Infertility Warrior
I was checking some of my messages a few days ago on my social media accounts and I saw a new one from one of my followers.
Here’s what their message said:
“Hey, just checking in with your journey. If we are right, blood test was today or yesterday? As one family who has experienced struggles to another, know you’re not alone. Whether it’s joy or frustration, both are real, valid, and warranted – never feel like you shouldn’t feel the way that you feel.”
Here was my response:
“[. . .] I wanted to say that your message meant so much to me and I was deeply moved by it. I apologize it took several days to respond, I was dealing with some hard emotions about receiving a negative pregnancy test. [. . .] I wanted to say thank you for reaching out to me and asking how I am doing. At first I felt numb, then I felt angry, then depressed, and now I am starting to feel a little better. So a whole range of emotions. I talked with my husband about your message and how much it meant to me. I said to him, “There’s people out there who really do care about us.”
It blew me away that others were following our journey closely enough to know I hadn’t posted anything about the pregnancy test results yet. They had looked at the timeline and knew when it would have been time for me to find out. What they told me felt like exactly what I needed to hear, at the exact time I needed to hear it. So who was it that reached out to me with those kind words? I asked if they were okay if I shared their message of support on my blog and they said yes. They are Charlie and Missy, and they too experienced infertility struggles. A while back I had watched their inspiring YouTube video titled Evolution of a Family: From 1 to 6 Kids in Less than 5 Years (Winning the Infertility Battle). It was a memorable and inspirational video of how they overcame infertility. It brought me hope to see it again and I think you will enjoy it as well. Thank you again Charlie and Missy for reaching out to me and showing your support! 🙂
Being open about my infertility struggles through my blog and different social media accounts has helped me to gain more knowledge, feel connected, and get support from others. When I can, I also try to give back too. Sometimes I share my knowledge, through my own trial and error. Or I’ll send words of encouragement when someone posts some tough news. I love congratulating other infertility warriors when they finally give birth to their precious baby. Seeing those stories fills me with hope. If they can do it, maybe I can too. This community has lifted me up in so many ways. I wouldn’t be the same without you all, and for that I am forever grateful.
The dreaded two-week wait. This is the time when you wait to find out whether you are officially pregnant or not. Or in my case, it is technically the dreaded 9-day wait, because I transferred my 5-day old embryo. Even though five days are knocked off my wait time, it is still a stressful time. It’s more like a low-grade stress. I’ve been coping by zoning out in front of the TV, trying to distract myself.
Recently I asked on Instagram whether you all chose to wait for your hCG blood results from your doctor, or if you took a home pregnancy test before your two week wait was over. I was actually surprised that most of you said that you chose not to wait, and took a home pregnancy test. A decent amount of you said that you take multiple tests during this time. Some of you said that the main reason you wanted to do it at home is that it felt so impersonal to hear the results from someone they don’t even know from the clinic. It’s understandable that you want to share that moment with your partner, whether it’s good or bad news it’s nice to actually have someone you love with you for support.
But my husband and I talked it over and we agreed that for us, it was best if we waited for official results from the doctor’s office. I wanted zero mystery, and so did he. Between false positives and false negatives, it’s just not worth it to us. I have recently come across several infertility Instagram accounts that have talked about how heart breaking it was to get a false positive with a home pregnancy test. All of the initial joy and excitement can make your heart sink so quickly with a false positive.
During my Two Week Wait I occasionally posted on my different social media accounts with pictures from my trip, and updating everyone how everything was going. Some people messaged me and said they were surprised that I am choosing not to do a home pregnancy test and said to me, “I can’t do that, I would have gone crazy.” But I feel like I would have actually gone crazy if I did test myself. Because knowing myself, and what I used to do, I would have been testing daily like I see other women doing. Not to say they are crazy, but I would have been locked into an all-consuming circle of thoughts that usually sounded something like this:
It’s Friday night and I won’t be able to do an hCG blood test until Monday at my doctors office. I’ll call them then. Maybe I’ll try a test here at home in the mean time. Is it too early to test?
(Googles earliest time to test and learns that each home pregnancy test is different.)
Here we go…
The instructions say a faint pink line is pregnant. Is that a faint pink line? Hmm.. (squints hard)
Or is that a “shadow line?” Because I’ve heard a shadow line isn’t really pregnant.
If I turn it slightly to the side the line looks pink on the edges. So does that mean it’s actually a pink line?
Maybe if I take a photo of it and post it in my infertility group they could help me figure it out.
But what if the lighting isn’t good enough for all of them to see?
(Takes 10 photos and analyzes the clearest one to post, then uploads for others to analyze as well).
Looks like about half of them are saying “pregnant” and congratulating me. Wow look at all those smile and heart emojis they are giving me. Maybe I am pregnant.
But it looks like a decent amount of others are saying “not pregnant” and telling me “So sorry, sending hugs your way.”
Some people are also saying “I don’t know” or “it’s too hard to tell.”
Seems to be a real mixed bag of responses. Now I’m even more confused.
Hmmm…I see here this other person took a picture of their pregnancy test and inverted the colors to see the line better. Maybe I should try that. Dang, I already threw away the test. I’ll have to do this all over again.
And on, and on it goes…
No thanks, I don’t want to deal with that again. And even digital pregnancy tests can have false positives or say “Error.” So they aren’t completely fool-proof. Plus they are expensive. You’ve probably seen other women posting photos of their cheapies (cheap home pregnancy test strips), with hand written dates or time in their cycle when they took their test. Not one, not two, not even three, but it seems to me the average amount of cheapies used during the typical two-week wait seems to be six. That’s six days of doing a home pregnancy test. Six times to analyze a pee stick, maybe post it online, and wait to hear what others think. I’ve also seen women doing it for their entire two-week wait.
That is a hard pass for me. I know how my mind works and I would drive myself bananas if I did it every day. Can you understand now, why I chose to say hell no to a home pregnancy test this time? I’m so over it. If you’ve followed our timeline you’ll know I’ve experienced pregnancy losses and I haven’t had a baby yet. Truth be told, a home pregnancy test means nothing to me anymore. I don’t get excited about taking them and instead I actually dread them. I don’t breathe a sigh of relief when it looks positive. Instead I question when the other shoe will drop, because based on my own experience it always does.
For me, seeing my baby healthy and alive on the ultrasound monitor has so much more meaning than a “maybe” pink line on a pee stick. Although I don’t recall the exact statistic, I’ve heard that once you hear your baby’s heartbeat your odds of miscarriage go down quite a bit. Although I’ve never been able to make it far enough to hear my baby’s heartbeat, in the past I’ve been able to see my baby’s heartbeat in two different pregnancies. That was really amazing, to actually see life inside of me with a tiny little heartbeat fluttering away. These are the types of milestones I look forward to and I hope for again in the future.
Did you use a home pregnancy test during your two-week wait? If so, when did you take it? What advice would you give other women who are in their two-week wait? Comment below.
Today is big, like really big. If you are new here let me catch you up quickly. I’ve struggled with infertility for about 4.5 years. I’ve had six miscarriages, all from natural conception. I’ve done two egg retrievals and only had one embryo. Our embryo has been cryopreserved for a while. After nearly two years of medical and other issues come up (see Our Timeline), I am finally able to do this transfer. It’s been such a long, exhausting road but I am finally, finally here.
What was it like to do an embryo transfer during COVID-19?
My husband was unable to take time off work to be with me. Even if he was here, he wouldn’t be allowed in the procedure room due to my clinic’s COVID-19 policy, that only allows the patient in the waiting room and procedure room. Plus I’m not here to do any sightseeing while COVID-19 is going on, and the numbers are much higher in Seattle compared to back home in Anchorage. I’m only staying inside the hotel other than going to my procedure. Essentially I’m self-isolating while in Seattle. My clinic requires all patients and staff to wear masks to that is reassuring.
I bought a plastic face shield from Amazon not too long ago and wore it on my flights. I felt a little safer wearing it, especially when I heard a lot of sneezing and some coughing coming from all parts of the plane. I wanted to take extra precautions if I become pregnant and to also protect my family members who are immunocompromised. My state requires a negative COVID test and/or 14-day quarantine once residents and visitors arrive in Alaska. I’m actually surprised that Seattle doesn’t have this in place, I’ve heard this is due to their recent decline in cases. But their overall numbers are a lot higher than back home. So when I go back home I will need to do a COVID test right there at the airport.
Looking like a turbo nerd in my face shield, but with all the sneezing and coughing I hear around me on the plane a feel a little better with this.
The Deathbed Test
Several years ago when I was conflicted on what to do about my infertility diagnosis, when my head and my heart were at odds, I decided to do the “deathbed” test. You’ve probably already heard of this, but if not, it essentially is a question you ask yourself. Imagine you are on your deathbed, thinking back on your choices in life. Ask yourself, “Will I regret not doing _______?” You can fill in the blank with whatever scenario you are currently debating. For me personally, I find that this is a great question to ask to get clarity.
I asked myself years ago, “Will I regret not trying to get reproductive assistance to have a baby?” For me, it was a lightning bolt of realization, a strong and resounding, “Yes, I will regret not trying.” Even if I try and try and I reach the point where I decide to stop, at least I can look back on my life and know I did everything possible to make it happen. So here I am now, doing all I can. There have been times where I’ve experienced extreme exhaustion physically and mentally form all of this, to the point where I question whether I will be able to continue if this doesn’t work. The outcome and timeline may not be what I want, but as long as I am making my best effort, I will be content.
Good Luck Charm
If you’ve been around the infertility block, you’ll know that embryo transfers are a time for hopeful traditions. It’s all in an effort to embrace the possibility that maybe your embryo will implant and you will become pregnant. Some of those include wearing colorful lucky socks with pineapples (symbol of fertility). Some socks say “IVF got this,” which doubles as a self-empowering statement, as well as telling others you are going through IVF with a hopeful heart. My personal favorite is the one that says “Sticky Vibes” with a smiling pineapple. There are also T-shirts made specifically for transfer day. People have seriously carved out an entire niche business around transfer day products.
With everything going on I’ve been so busy planning for my transfer that I forgot to order lucky socks or a shirt. But despite the plethora of socks and shirts to choose from, I decided to do a quicker and, as it turns out, a much more affordable option. I went to my local craft store, Michael’s, picked out a pineapple charm and attached it to a matching gold chain. Only three bucks, not too shabby. I decided to wear it on my transfer day, which you can see in my pictures further below.
Pineapple Necklace I bought from Michael’s craft store.
Just Before the Transfer
I decided to take a couple pictures just before I left my hotel for my transfer. In these pictures it captures my gratitude for having made it this far as well as my hopefulness, that just maybe this will work. It’s a long shot, but I need to take it. I’m happy to have this opportunity. These pictures are of pure joy, despite not knowing what the future holds. I know I am doing all I can, with all I have.
After I downed 24 ounces of water between 1:00pm-1:30pm for my 2:00pm procedure, I was good to go. For your transfer most doctors recommend you come in with a full bladder which I’ve heard helps them see what’s going on better during the ultrasound when they do the transfer. I put on my necklace, snapped those quick photos to capture the moment, then I was on my way to the clinic.
As we pulled up to the clinic something unusual happened. There was a pedestrian trying to cross in front of my Uber. He was pushing a cart with a fully assembled office chair inside. Instead of slowly moving from the sidewalk to the road itself he pushed the cart hard and the office chair flew out of the cart and across the street. He started cursing as my driver had to completely drive into the other lane to get around him as he picked up his chair. The driver had to do this because there were cars quickly piling up behind us. My driver pulled further up beyond the man, who managed to get the chair back into his cart. Stay with me here, because all of this comes together with something that happens later.
I got out of my Uber, thanked the driver, and walked across the street to my clinic. The man with the cart is now yelling loudly, and although he is yelling I cannot understand anything he is saying. It sounds like fast-paced gibberish. I don’t know if he’s yelling at my driver, or me, or at the situation. I can’t make out anything he is saying. But he’s got his cart, the chair inside the cart again, and he made it across the street without getting hurt. No a big deal, other than maybe a slight blow to his ego. I open up the door to my clinic and make my way to the surgery center.
The way this building is set up there is a big open lobby area where no matter what floor you are on you can look down onto the lobby. So after I got off the elevator I was walking towards the surgery center. Just before I got to the surgery center door I heard a loud slam come from downstairs in the lobby. I glanced down and saw the man that had been on the street with the cart was now pushing the cart into the entrance door, struggling to get into the building while he was yelling. I could hear him all the way up on the fourth floor, across the whole building. In all honesty, I felt like it was none of my business, plus I had my procedure I had to get to on time.
I quickly signed a few papers in the surgery center and sat down in the waiting room. I could feel myself smiling and sighing with relief. I’m here, I’m finally here. After everything I’ve been through, this could actually work. I’m minutes away from my long awaited embryo transfer. I’ve waited almost two years for this moment.
A few seconds after I sat down another patient came in, a guy. At first I thought he was here to support his partner. But I heard the receptionist say something about his surgery to him. Ball surgery I thought to myself. Ouch. This surgery center strictly deals with reproductive issues. Granted I am woefully informed on male reproductive surgery options, other than testicular surgery where they can actually extract sperm if the man has problems producing sperm the good old fashioned way. I’m making assumptions about this guy, and I could be totally wrong. If you are reading this and you were that guy in the office I apologize if my assumptions were wrong.
Fire Alarm Goes off Just Before Transfer
Both he and I sat there quietly for about two minutes. Then I thought I saw a quick flash of light. Maybe the fluorescent light above us flickered briefly. A few seconds later I saw the bright flash again. This time I noticed the guy sitting across from me was looking up at the ceiling. I looked up to see what he was looking at. I realized he was looking at the silent fire alarm flashing for the third time now. No sound, maybe it’s a test. Then…waaaaaah, waaaaaah, waaaaa– “Are you for real?!” I shouted at the alarm. Here I was about to finally do my embryo transfer, and then of the all the moments for the fire alarm to go off it goes off now. What the actual f**k?!
Not knowing the circumstances I got up and evacuated with everyone else. We all filed down the emergency stairs and out of the building. I’m not sure how many people evacuated but there looked to be at least 50 people that evacuated. Initially I was feeling angry about the situation, but as soon as I stepped into the alleyway, I started to feel stress shoot through my body. I decided to call my husband and it helped to hear his voice as he tried to reassure me that it was probably a false alarm. But now I had so many questions come to me all at once. I posted about it on Instagram:
“Is my embryo sitting thawed out already? How long will it survive sitting there if it is thawed? Is this a false alarm or is the building really on fire somewhere?
I was stressed to the max.
My bladder was very full (needed for transfer).
I had no clue what would happen to my embryo.
Thirty minutes later the fireman gave the all clear. I overheard the staff say that it turns out someone pulled the fire alarm…” (Instagram @hopingforbabyblog)
I’m no detective, but I’m thinking the man who was yelling gibberish and slamming his shopping cart into the front door may have been the culprit. But I don’t know for sure, that’s my best guess though. What a fantastic day this is turning out to be. It’s truly the exact opposite experience someone should be having before their embryo transfer. You are supposed to be reducing your stress level, meditating, thinking happy thoughts, and all that s**t. All of that was out the window for me now.
I could still feel my heart pounding with anxiety when I got back into the office. I asked the receptionist right away, “Is my embryo okay? Was it sitting there thawed out?” She reassured me that it was not thawed out because they hadn’t called me back yet. Phew! Oh my God, I was literally minutes away from that scenario. When I got called back to the procedure room I saw my doctor in the hallway, she smiled and said, “Hey it could have been worse,” which is true I suppose.
I changed quickly in the procedure room and got into position in the super awkward exam table. This one is different from your typical table. This one splays out your legs so far that if you aren’t flexible it feels like you are going to break in half. No one told me I needed to be flexible for this procedure. “I don’t think I can bend that way” I jokingly told the sonographer. But I managed to make it work. “Are you okay?”she asked me. I laughed again and said, “Not really.” She adjusted the leg holders a bit inward. It was better, but not comfortable by any means. I guess it’s supposed to be that way for this particular procedure, not like with your annual exam.
The sonographer checked my bladder briefly to see if it was full enough. After this friggin’ fire alarm and waiting nearly an hour with a full bladder I felt super uncomfortable. But my bladder had to be full for the procedure. Here’s what I wrote on Instagram account later:
“Despite someone pulling the fire alarm right before my embryo transfer (see previous post), I was still able to do my transfer. And yes, I had to hold from going pee with a full bladder (required for transfer) while the fireman were inside for about 30 minutes.
When I was finally able to go back inside I only had one thing on my mind while they were inserting my embryo…”please don’t pee, please don’t pee, PLEEEASE!” I had to go so badly now that we were running late for my transfer.
Near the last few minutes I could feel my heart rate going down. They told me that because I hadn’t been called back when the alarm went off, they hadn’t thawed the embryo yet. So my embryo was perfectly fine just chillin’ in cryopreservation while I was nearly having a panic attack outside on the sidewalk.
The embryologist said my embryo looks “beautiful” and that it was hatching, which I’ve heard is a good sign. I was able to go to the bathroom right after the transfer, THANK YOU JESUS!
I cannot believe this happened today, but I’m even more surprised I was still able to do the transfer despite the situation. What a rollercoaster of emotions! Phew! Right now I’m just relaxing in my hotel.” (Instagram @hopingforbabyblog)
Before they transferred my embryo they handed me a card with a close-up photo of my embryo. They let me know my embryo was hatching and that it looked really good. I was so flustered from the fire alarm I didn’t think to ask what grade it was. But I figured it was good since they said it looked like a high quality embryo. It was amazing to see this embryo not only in the photo but also in real time. They let me know the embryo survived the thaw and they let me watch on the screen as the embryologist carefully sucked my embryo into the thin catheter. The embryologist walked over to my doctor, who then inserted the embryo inside me. Afterwards the embryologist examines the catheter to make sure the embryo is no longer inside and that it was successfully transfered. It only took a few minutes and it was over. I was looking at the photo of my embryo on the drive back to my hotel. Maybe this little embryo will turn into a pregnancy, that will turn into a live-birth. Maybe I will finally have a baby. I felt like my hope had been renewed.
I decided to hop on the bandwagon and participate in the fun tradition of eating McDonald’s French fries right after embryo transfer. If you ever wonder why women from the infertility community are happily posing on Instagram or Facebook with french fries after their transfer, the belief is that it may help with the embryo implanting. I don’t really buy into this theory. I just like french fries. I was most of the way through my fries and then I remembered I wanted to take a picture, just for funsies. I feel like I evened it out with a healthy salad later that night. It was one of the best salads I’ve ever had. If you are ever in Seattle, go to Joey Restaurant and order the Farmers Market Salmon Salad. Friggin’ amazing! Super healthy.
Yummy Salmon Salad while watching 90 Day Fiance Marathon at my hotel.
Will my Embryo Implant?
I’m happy that I was still able to do my transfer, but it was so stressful. I don’t know whether the high stress will impact the embryo implanting. You always hear fertility doctors saying that we need to do everything to be as relaxed as possible, so what will come of this situation. The only thing I can do is try to chill out at the hotel tonight and tomorrow morning. I leave on my plane tomorrow afternoon. Now I need to wait to see if my embryo implants or not. I’ll need to do a quantitative hCG blood test here soon. I’ll be posting more photos of my trip on Instagram here later.