Infertility sucks.
It can be draining on your health. It can be draining on your marriage. It can be draining on your social life. It can be draining on your finances.
It's crazy to me just how much it costs to do fertility treatments. Attempts and trials to create life. Some successes and some failures.
I feel like for every failure there should be some kind of refund (even a partial one). Right?
I commend all the couples who have plunked down tens of thousands of dollars on failed attempts. I don't know if I could be that strong. Who knows, maybe we will be.
Recently, I went in for a baseline ultrasound and bloodwork following another failed IUI cycle. When I went to check out with the receptionist, she told me that we had a balance of $XXXX. While I was expecting a balance of some kind based on our previous IUI cycle, I had no idea that it would be five times the amount of the previous time!
I did a double take and asked her to say that again.
I couldn't understand how or why there was such a disparity in the pricing for the EXACT. SAME. PROCEDURE.
Sure, there was a little more monitoring in the way of ultrasounds and bloodwork for this most recent cycle. But in the end, the IUI method was the exact same method.
I talked to the insurance/billing coordinator at the doctor's office to find out what I could about the billing. I was really praying that it was a mistake.
Unfortunately, to my dismay, because the IUI cycle was considered a "Combo Cycle" because we started with straight injectables (Follistim) rather than pills (Femara or Clomid), it was considered an "S-Code" that doesn't get billed until AFTER the IUI procedure and all in one lump some. Some kind of "contractual obligation" to bill that way.
It's a load of insurance mumbo jumbo bull if you ask me. It's how the insurance company gets out of paying for anything and just having this "applied to the deductible".
When I went in for my baseline ultrasound, the ultrasound tech said she saw a cyst, so I figured that meant that we'd have to wait until that cleared. The nurse called me later that day letting me know that I'd be able to start on injections that evening.
Enter the financial conundrum.
Considering that the most recent cycle cost $XXXX, we had to talk about if we could even do another cycle based on the amount that it cost. Yes, we'd get closer to our deductible, making IVF more within reach (if we decided to go down that path)...but seriously, the financial side of this stuff is no joke!
Given our current circumstances, including looking into buying a house, we just can't swing another unexpected lump sum of money...on something that might not work.
I know, I should be thinking "but what if it does work?" and knowing full well that if it were to work, it would have be totally worth whatever we had to shell out.
However, coming from a place of pure pragmatism...it just doesn't seem wise at this time.
It's disappointing.
It feels oftentimes like I have to choose between a house or a baby. We'd like to move to another house for the sake of our future baby. And we'd like a baby.
Too much to ask for!?
Balancing Hope and Disappointment
I know there are tons of quotes about rejection and not giving up.
About perseverance in the face of adversity.
About staying positive and moving forward.
Infertility messes you up.
Not just in the obvious sense of not being able to conceive easily, but mentally as well. It's
I'm pretty sure that after I experienced my miscarriage, I went into a state of depression. I'm thinking that it was on the milder side of things since I was still functioning, still able to get out of bed, and still able to do every day things. I did notice, however, that I didn't have the same drive or motivation to do things as I once did.
My dream of becoming a mother had finally come true, and on our own at that, and then just as quickly as we realized our dream, it was shattered. Into a million pieces.
I felt like I was in a million pieces.
Maybe I deal with grief more gracefully, or maybe I just lie to myself that I'm doing just fine.
Infertility infiltrates your life in a way that you might not even see coming. It lingers like that pimple that just won't go away or mosquito bite that just won't heal.
It seeps into your inner thoughts making you wonder why you should keep on believing or keep on trying. What's the point?
We're looking to possibly make a move and move into a bigger home in a better neighborhood for our future kids. The thoughts of, "What if we never have kids to fill this house?" creep into my head and make me question everything we're doing.
And that's not even addressing the stress that comes with everything it costs to go through and treat infertility. It's not cheap.
It's really upsetting that it is so simple (and inexpensive) to end a life through abortion, and yet it can be ridiculously cost-prohibitive for couples to start a family. I'm not trying to get in a debate about abortion, but I'd like to address the elephant in the room. I think that needs to be something politicians think about.
Every cycle that we go into, I start out ever so hopeful. Like, this could be it. This will be the cycle that gets us our baby. I follow the protocol, the injections, the pills, the medications.
We try to do everything we can to have the best outcome.
And then disappointment.
How do you hang onto hope when you face disappointment? I don't have a clear answer.
I try to turn to gratitude and find the things that I'm grateful for. But I'd be remiss if I said that I didn't also take some time to be sad about it.
I think the key to balancing hope and disappointment is to not remain in disappointment. To take it for what it is and continue moving forward.
How do you hold onto hope in the midst of disappointment?
About perseverance in the face of adversity.
About staying positive and moving forward.
Infertility messes you up.
Not just in the obvious sense of not being able to conceive easily, but mentally as well. It's
I'm pretty sure that after I experienced my miscarriage, I went into a state of depression. I'm thinking that it was on the milder side of things since I was still functioning, still able to get out of bed, and still able to do every day things. I did notice, however, that I didn't have the same drive or motivation to do things as I once did.
My dream of becoming a mother had finally come true, and on our own at that, and then just as quickly as we realized our dream, it was shattered. Into a million pieces.
I felt like I was in a million pieces.
Maybe I deal with grief more gracefully, or maybe I just lie to myself that I'm doing just fine.
Infertility infiltrates your life in a way that you might not even see coming. It lingers like that pimple that just won't go away or mosquito bite that just won't heal.
It seeps into your inner thoughts making you wonder why you should keep on believing or keep on trying. What's the point?
We're looking to possibly make a move and move into a bigger home in a better neighborhood for our future kids. The thoughts of, "What if we never have kids to fill this house?" creep into my head and make me question everything we're doing.
And that's not even addressing the stress that comes with everything it costs to go through and treat infertility. It's not cheap.
It's really upsetting that it is so simple (and inexpensive) to end a life through abortion, and yet it can be ridiculously cost-prohibitive for couples to start a family. I'm not trying to get in a debate about abortion, but I'd like to address the elephant in the room. I think that needs to be something politicians think about.
Every cycle that we go into, I start out ever so hopeful. Like, this could be it. This will be the cycle that gets us our baby. I follow the protocol, the injections, the pills, the medications.
We try to do everything we can to have the best outcome.
And then disappointment.
How do you hang onto hope when you face disappointment? I don't have a clear answer.
I try to turn to gratitude and find the things that I'm grateful for. But I'd be remiss if I said that I didn't also take some time to be sad about it.
I think the key to balancing hope and disappointment is to not remain in disappointment. To take it for what it is and continue moving forward.
How do you hold onto hope in the midst of disappointment?
The Great Follistim Shortage
I was finally able to start a cycle with my doctor's office!
After waiting for a cyst on my ovary to collapse and travel plans to pass, I was finally able to move forward with treatment.
This time around, my doctor had me go straight into injections with Follistim. I was really lucky to have a friend who had some Follistim leftover from another cycle that was not yet expired. However, when I tried to order more, I learned that there was a national Follistim shortage.
How the heck does that happen!?
Considering that Follistim is lab-derived, you'd think that it would be fairly straightforward to keep in stock. Right? Well, apparently not.
When I used up my supply from my friend, and needed more the same night, I let the nurse know that I didn't have any. She sent out the prescription for GonalF, which was it's own adventure in fertility drugs. However, since I didn't have any on hand and needed to inject myself with a dose that night, I was lucky enough to get some Follistim from my doctor's office that had been donated back by another patient.
I drove through rush hour traffic all the way across the city and back, and in the midst of it all, one of my tires was losing pressure and I was super paranoid driving back across town in the event that it might blow out or get flat. Talk about stressful...
It boggles my mind how a pharmaceutical company isn't able to accurately forecast med quantities. You'd think that a shortage would be unheard of...or if there was a shortage that the pharma rep would let the doctor's office know.
And let's now get started on the complete and utter racket that the pharmaceutical companies and insurance companies are. They are no doubt in cahoots with each other for profit. I feel like insurance companies should be a non-profit organization based on principle alone - in order to provide the best care for their customers, instead of gouging them, quoting ridiculous pricing for medications.
I'm not sure how it's possible, but the medication that I ended up ordering through a cash pharmacy was quote to me at almost THREE times the cash price, and that was supposedly the "co-pay". In my experience, co-pays shouldn't cost more than the CASH price of a drug. Maybe I'm wrong, but something just seems terribly fishy there.
As of this writing, Follistim is still in a state of national shortage, and hopefully should be back to normal stock by July.
Our Infertility Journey
Going through infertility is probably one of the hardest things I've had to deal with in my adult life. It's kind of weird because it's not a life-threatening condition, per se, but it is a disease. One that people often suffer in silence with.
However, infertility has also proved to be a great blessing. How? If it wasn't for being on this journey through the waters of infertility, I would have never met the amazing community of ladies who are going through the same thing. We all belong to a club that we wish we weren't a part of, and each wait for the day when our membership is revoked. We can't wait to be kicked out of the club.
I don't think I've shared our own infertility journey, and if anything, it needs a little updating.
We got married in July 2009 and because we dated long distance for three years, we wanted to spend the first couple of years of marriage as a couple. We knew we wanted children, but we wanted to savor the time just the two of us.
In 2012, during my annual well woman exam at my OBGYN's office, I was officially diagnosed with PCOS - polycystic ovarian syndrome. I had the symptoms: trouble losing weight, craving carbs, unwanted facial hair, thinning hair, irregular periods... All "manageable" symptoms through nutrition and exercise, but annoying nonetheless. Since we were not yet trying to start a family, I continued on the pill to regulate my cycles.
In 2013, we were ready to start trying for a family. I came off the pill and knew that it could take a couple of months for my hormones to regulate. We made it to the end of 2013 with no success.
In 2014, after about a year of trying, we saw my OBGYN to try some medicated, timed intercourse cycles. We did Femara/Letrozole and also tried Clomid. I seemed to respond decently to the medication, but no pregnancies.
In June 2014, my OBGYN referred me to a reproductive endocrinologist - the office whose Letrozole and Clomid protocols she was following. I made the appointment and went to my first RE consultation.
I went to the consultation by myself and walked away overwhelmed and unimpressed. The doctor I met with didn't take any time to get any of my history (which I thought was important) and quickly launched into a standard protocol of Clomid and trigger shot.
At the time I wasn't as familiar with medicated cycle protocols as I am now, and I felt like the doctor was not listening to me. My OBGYN had suggested that I had a uterine lining issue (it was thinner than ideal), and told me to tell the RE. Well, he didn't even listen to that. I felt like I was wasting my time if he was just suggesting the same thing I had already done at my OBGYN's office.
I was annoyed. I didn't like that he didn't get to know me at all. I felt like a number and he was just giving me the standard plan of care. I felt like if I was going to have to pay out of pocket for this anyway, I needed to like my healthcare provider.
Needless to say, I did not return to his office ever again.
At the end of 2014, I did return to my OBGYN's office for two more medicated cycle attempts. When our final attempt had no progress, we decided to take a break from medicated cycles. Around the same time, I also started seeing the nutrition testing specialist through my chiropractor. We started supplementing what I was deficient in to help rebalance my hormones.
I continued to see the nutrition testing specialist through the beginning of 2015. I was a lot of vitamins and supplements, and I felt like if I could help my issues in a natural way, that would be great.
After about a six month break, I started to look into a new reproductive endocrinologist. There were a few top offices in our area that I found.
I had a couple important criteria I wanted in a doctor:
- female doctor
- experience with PCOS
- compassionate, empathetic, kind
While I know that male doctors are probably just as qualified as female doctors, I believe that female doctors understand these issues on a level that a man cannot. I feel way more comfortable with a female doctor and it helps when she can empathize (NOT sympathize) with me.
In July 2015, I made an appointment with an RE at a new practice. Based on her online profile, she seemed to fit most of my criteria. The personality component would be determined at our consultation.
Well, long story short, I LOVE our RE! She fits all the criteria and really appreciated that she spent about an hour with us going over our family histories, our personal medical histories, and personally did my first baseline ultrasound. I was impressed. She was kind and carefully reviewed our case to give us her honest suggested plan of care.
In August 2015, while waiting for my cycle to start before we could move forward with the plan of care with our RE, I was on cycle day 40...and I took a pregnancy test. It was positive! I had never seen a positive test before! Coincidentally, the RE's office called that same day to have me come in for routine bloodwork. I told them that I had a positive home pregnancy test and they said they'd do a beta Hcg test as well.
Later that day, it was confirmed that I was indeed pregnant, with an hCG level of over 9,000! (If you're new to beta numbers, that's super high! I didn't really know at the time how high that was). The following week, we went in for our first ultrasound and we got to see the gestational sacs...there were two! But only one looked to be growing. However...based on the date of my last period, it looked like the size was a little bit behind, so they had me come in the following week to check again.
The following week, there was no progress in growth. The doctor seemed to be cautiously optimistic about it, and had me come in the following week. She said that if there were no changes or heartbeat the next week, then we'd have to discuss options.
Well, in September 2015, I miscarried. Our baby stopped growing at about 5 weeks. We never got an accurate reading/measurement and never saw a heartbeat. I opted to take the medication to help move the miscarriage along after waiting two weeks to miscarry naturally. You can read about that here.
After the miscarriage, I had to wait for my cycle to return. My first period post-miscarriage was insanely heavy. Like...crazy heavy. The second cycle was a little bit more normal.
In November 2015 after my cycle started, I had my original testing done (that didn't happen because we took a detour with a positive pregnancy test), and that included an HSG and hysteroscopy. My doctor found a polyp during the hysteroscopy and my tubes were clear following the HSG. I experienced minimal pain with both, but I have a higher tolerance for pain.
In December 2015, I had a hysteroscopic polypectomy to remove the polyp. It was pretty easy. I was nervous about the anesthesia, but it turned out to be an amazing nap. I went home that morning and had another great nap. I felt pretty good the next day.
At the end of December, we tried a Letrozole cycle with trigger, except during my Day 12 soon, I had already ovulated.
We did a Letrozole + Ovidrel trigger at the end of January 2016.
In February 2016, we did Letrozole + Follistim + Ovidrel trigger + IUI.
In March 2016, when I went in for my baseline, they found a cyst lingering on my ovary, after having a super light period.
About two and a half weeks later when I thought my cycle started again, they saw the same cyst, but it was smaller. So I had to wait until it cleared.
My normal cycle started at the end of April 2016, however, because I was going to be out of town and unable to come in for monitoring, we have to wait until the next cycle.
I feel like waiting is the story of my life lately!
So here we are...waiting....waiting...waiting.
I'm a professional at waiting!
#StartAsking and Advocate for Yourself
This week is National Infertility Awareness Week. I know that when I started out on my journey of starting a family, I had no idea what was in store. I never thought that becoming a parent would involve thousands of dollars, endless blood draws, countless ultrasounds (and not the kind in the movies on the outside of the belly....) or even surgery.
Our path has.
I remember when I first learned that it was going to be more complicated to start a family. I was overwhelmed. There was so much information and so little information. And if you don't know anyone who has gone through infertility, you can get lost quickly!
When my OBGYN referred me to a specialist, I was really nervous because I didn't completely understand the process. You'd think that biology and health classes in high school and college would explain it, but it's such a complicated process! When you're not actively trying to conceive, you kind of ignore the details...I know I did!
If you come to the place where you are ready to meet with a specialist, you must advocate for yourself. The first reproductive endocrinologist seemed to be in a hurry. There I was, nervous, didn't understand all the infertility/fertility terms or procedures, and here was this guy spewing all the tests that we had to do. He didn't take time to get to know me or my history. He launched directly into his standard protocol of treatment.
I was not comfortable with that.
I never went back.
Then I heard he left that practice.
When I was ready to dip my toe in the RE pool again, I did my research. I knew that I wanted to find a female doctor (if possible), and hopefully one who had experience treating women with PCOS. I wanted to find someone who would listen to my concerns, answer my questions, and get to know my husband and I a little bit before advising treatment.
After lots of research, I found our current RE, who is wonderful and everything that I could ask for in a reproductive endocrinologist. She has fantastic beside manner, is kind, empathetic, and explains everything in plain English. She is the best!
That experience taught me that if I had gone blindly with the other specialist...who knows where I would be. I know at the very least, I'd be a little disappointed in my care!
This journey is HARD. You must advocate for yourself. Ask questions. Find support.
When you're looking at spending thousands of dollars (with and without insurance!), you shouldn't have to just go to "anyone". If you have the ability to choose your doctor, do so. Even if it means you have to interview multiple specialists. You should feel 100% comfortable with your doctor!
Infertility is defined as the inability to conceive for 12 months or to carry a pregnancy through a live birth
Our path has.
I remember when I first learned that it was going to be more complicated to start a family. I was overwhelmed. There was so much information and so little information. And if you don't know anyone who has gone through infertility, you can get lost quickly!
When my OBGYN referred me to a specialist, I was really nervous because I didn't completely understand the process. You'd think that biology and health classes in high school and college would explain it, but it's such a complicated process! When you're not actively trying to conceive, you kind of ignore the details...I know I did!
If you come to the place where you are ready to meet with a specialist, you must advocate for yourself. The first reproductive endocrinologist seemed to be in a hurry. There I was, nervous, didn't understand all the infertility/fertility terms or procedures, and here was this guy spewing all the tests that we had to do. He didn't take time to get to know me or my history. He launched directly into his standard protocol of treatment.
I was not comfortable with that.
I never went back.
Then I heard he left that practice.
When I was ready to dip my toe in the RE pool again, I did my research. I knew that I wanted to find a female doctor (if possible), and hopefully one who had experience treating women with PCOS. I wanted to find someone who would listen to my concerns, answer my questions, and get to know my husband and I a little bit before advising treatment.
After lots of research, I found our current RE, who is wonderful and everything that I could ask for in a reproductive endocrinologist. She has fantastic beside manner, is kind, empathetic, and explains everything in plain English. She is the best!
That experience taught me that if I had gone blindly with the other specialist...who knows where I would be. I know at the very least, I'd be a little disappointed in my care!
This journey is HARD. You must advocate for yourself. Ask questions. Find support.
When you're looking at spending thousands of dollars (with and without insurance!), you shouldn't have to just go to "anyone". If you have the ability to choose your doctor, do so. Even if it means you have to interview multiple specialists. You should feel 100% comfortable with your doctor!
Some facts about infertility, from Resolve.org
Infertility is defined as the inability to conceive for 12 months or to carry a pregnancy through a live birth
- 1 in 8 couples go through infertility. Yes, that means someone you know is currently going through it whether they are open about it or not.
- 1/3 of the diagnosis have to do with problems with the female, 1/3 is male and 1/3 are both
- Only 15 states have an insurance mandate to offer some form of insurance
Now onto the #StartAsking theme: What questions can you start asking?
- Ask your doctor about tests, diagnosis, medical procedures, and options
- Ask yourself what natural steps you can take to increase your fertility
- Ask your spouse where they stand on medical intervention, adoption, etc
- Ask your friends and family to support and pray for you
- Ask your insurance what coverage you have
- Ask your employer for better coverage for infertility
- Ask your spouse how they are doing
- Ask your friends who are going through infertility how they are doing
- Ask your church to acknowledge infertility
- Ask your congressmen for better coverage for infertility.
