Best & Worst States for Infertility Services

Best & Worst States for Infertility Services
This post may contain affiliate links. You can read the disclosure here

 

During my research for my post Top 7 Websites Comparing IVF Clinic Success Rates, I came across Resolve.org’s State Fertility Scorecard. It shows a color-coded map of the United States as quick visual of the states that have better grade for access to infertility services. You can see your state’s grade and compare your state to others based on the following criteria (quoted from Resolve.org):

 

  • “Number of peer-led RESOLVE support groups in state for people experiencing fertility issues
  • Number of physicians specializing in infertility in state, at SART-accredited fertility clinics
  • Number of women in state who have experienced physical difficulty in getting pregnant or carrying a pregnancy to live birth
  • Insurance mandate information in each state” (Resolve, 2019).

 

 

Best States for Fertility Services with a grade of “A”:

  • Massachusetts
  • Connecticut
  • New Jersey
  • Maryland
  • Illinois

 

Worst States for Fertility Services with a grade of “F”:

  • Alaska
  • Wyoming
  • Mississippi

 

 

Resolve.com Fertility Score Card

Resolve.org’s Fertility Scorecard map of the U.S. The states with the best access to fertility services are in green, the worst states in red.

 

 

Overall Alaska ranks the worst out of every state, with Wyoming shortly behind when based on the highest number of women with zero access to fertility services. Although I was somewhat surprised that Alaska (my state) ranked so low, I didn’t imagine we would be one of the top three worst states to live in for those struggling with infertility. But in a way it also makes sense. I’ve had to fly out of state for both my first and second round of IVF treatment. We have zero support groups of any kind for infertility. A few years back I attended a miscarriage support group and I was just one of two in attendance, but I learned that group has since ended. That was the only group in the city related to infertility. Since my reproductive endocrinologist (RE) retired earlier this year there are zero RE’s within my health insurance’s network. I’ve heard from my OBGYN there isn’t a single RE in the state anymore. That means 15,612 women who have dealt with infertility or pregnancy loss does not have any access to a fertility specialist either (Resolve, 2019). Yet there are zero laws on the books regarding fertility treatment, which also means there is no obligation to provide insurance coverage of any sort. Not even partial coverage is an option here.

 

 

Resolve.com Fertility Score Card Alaska

Alaska’s Fertility Grade of “F” as viewed on Resolve.org’s Fertility Scorecard page.

 

 

Having learned all this, I feel very strongly that I should speak up and encourage our legislators to include at least partial insurance coverage for fertility treatment. I believe reproductive rights should include fertility treatment.  There are so many women like myself who are unable to have a child naturally. I understand that I will probably have to navigate many questions during my time advocating for change. But through everything I’ve already faced, I feel like I’ve developed thicker skin which is probably going to serve me well when I get involved in the legislative process. When I think about it, not only am I advocating for legislative change for other women but it would also benefit myself too. I’ve got nothing to lose and a lot to gain. 

 

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Today’s Question: 

If you live in the U.S., what is your state’s Fertility Grade on Resolve.org’s Fertility Scorecard?

 

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Learn ways to improve your egg quality. Purchase Rebecca Fett’s book “It Starts with the Egg: How the Science of Egg Quality Can Help You Get Pregnant Naturally, Prevent Miscarriage, and Improve Your Odds in IVF.” It’s currently the #1 Best Seller on Amazon.com’s Reproductive Medicine & Technology list. 

 

Sources & Images:

Resolve.com Fertility Scorecard: http://familybuilding.resolve.org/fertility-scorecard/

Top 7 Websites Comparing IVF Clinic Success Rates

Top 7 Websites Comparing IVF Clinic Success Rates

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

 

Question: 

How do I find the top-ranked IVF clinics based on success rates? 

 

Answer: 

The answer to this question is not as clear as you may think. The most important thing to consider before undergoing your search is to understand that “success” can mean different things. Those struggling with infertility may assume “success” means a live-birth, which would make sense, because that’s the end goal. But many fertility clinics view success differently. The statistics of an IVF clinic’s success rates can be skewed for different reasons. How is that possible? One way is they can alter the definition of success. 

 

Here are different ways a clinic may define “success”

5-Day Blastocyst stage reached

Embryo Implanted

Transfer results in one implanted embryo (but multiple embryos were transferred at one time)

Positive beta (positive pregnancy test)

Live birth

 

Aside from the varying definitions of success, there are many variables that can influence the outcome. Some IVF clinics turn away people due to the difficulty of their case, which would increase the clinic’s success rate. Essentially, the clinics that accept the harder cases also accept that they may take a hit on their success rates. There are variables some IVF clinics choose to avoid and they might suggest to patients to seek treatment with a different clinic. This is an example of lowering the pool of patients which increases the odds of more favorable results for the IVF clinic to report.

 

“Difficult Cases” Certain IVF Clinics Avoid

Higher Maternal Age

Poor Egg Quality (Low Ovarian Reserve, PCOS, etc)

Infertility Diagnosis (Hormonal, abnormal uterine structure, etc.)

High Body Mass Index 

Treatment used prior, including number of prior attempts

Patient history of miscarriages and previous live births

Male Factor Infertility

Genetic predispositions (MTHFR gene mutation, balanced translocations, etc.)

 

As you can see there are many variables that affect fertility. Those variables combined with the different definitions of success can make it challenging to find a truly balanced report of IVF success rates. Ultimately it is up to those dealing with infertility to do their due diligence with researching the clinics they may be interested in. Simply knowing that data can be potentially skewed can help someone be more careful while researching whether a clinic is right for them.

 

Selecting an IVF Clinic is Not Just About Statistics

  1. Consider your specific diagnosis, expected treatment, and rule out the clinics that are unable to provide the assistance or technology for your specific need. 
  2. Read what patients are saying based on their experience with their doctor, nurse, and office staff. Seek out reviews from those with a similar diagnosis as you. 
  3. Good communication with your clinic is vital. They should listen carefully to your concerns and respond promptly to your questions. Any miscommunication can lead major issues such as incorrect administration of medication. 
  4. Provides information on the realistic odds of a live-birth for you as an individual. 
  5. Find a clinic that creates a protocol to fit your specific situation and diagnosis.  

 

Top 7 Websites Comparing IVF Clinic Success Rates

 

#1 

CDC’s NASS 2.0 (United States)

I recently asked Rebecca Fett, writer of “It Starts with the Egg”, what website she would recommend that ranks IVF clinics and she responded with a link to The Centers for Disease Control and Prevention’s page about the National ART Surveillance System (NASS) 2.0.  This website shows a map of the United States. You can click on individual states to view statistics. The CDC’s NASS site has become one of the most reputable sources for finding statistics on success rates. The general consensus among many online infertility groups is they overwhelmingly recommend this site as their go-to source for information in the United States. Before the CDC’s website became the number one source of IVF clinic success rates, one of the top sites was SART (now in our #3 spot).

CDC Clinic Summary

 

CDC NASS Data

 

 

Link:

The Centers for Disease Control and Prevention’s page about the National ART Surveillance System (NASS) 2.0: https://www.cdc.gov/art/artdata/index.html

 

#2 

FertilityIQ (United States)

If you want to read what actual patients thought about their experience with a certain clinic FertilityIQ.com is one of the best resources out there. You can choose how you want to filter your results when you click the Research Doctors & Clinics button, these include View by Patients Like Me, View by Doctor, and View by Clinic. The View by Patients Like Me option is great if you have a diagnosis that is considered harder to treat, and you want to see where you can go for treatment that is more individualized to your needs. This site also integrates the CDC’s success rates which is a great feature of FertilityIQ, but if you read the FAQ section of  FertilityIQ you will see they point out some of the data may not have been updated for several years. 

 

FertilityIQ Clinic Overview

FertilityIQ View by Clinic

 

FertilityIQ View by Doctor

 

FertilityIQ Patients Like Me

Links:

Fertility IQ: https://www.fertilityiq.com

FertilityIQ Research Doctors & Clinics: https://www.fertilityiq.com/#doctor-search

 

#3

SART (United States)

The Society for Assisted Reproductive Technology (SART) shows data that was reported by clinics. One criticism of this site is that the data has not been updated since 2016 (as of 2019), whereas the CDC’s site was updated in 2017. On the Arizona Center for Fertility Studies (ACFS) website they point out the main distinction between SART and the CDC site, “According to the Fertility Clinic Success Rate and Certification Act, all ART cycles performed in the United States fertility clinics are legally obligated to report to the CDC.” Due to clinics being required to report their data only to the CDC, some clinics like ACFS chose to discontinue reporting to SART. The SART site still has helpful information but overall it is not as comprehensive as the CDC’s site. SART is better viewed as a supplemental source of information.

 

SART SRM

SART SRM data with graph

 

Links:

Society for Assisted Reproductive Technology (SART): https://www.sart.org

SART Find a Clinic: https://www.sart.org/clinic-pages/find-a-clinic/

 

#4

HFEA (United Kingdom)

The Human Fertilisation & Embryology Authority (HFEA) is similar to the CDC’s NASS, both are regulating organizations that collect data the IVF clinics are required to report. You can do a search on a fertility clinic’s”Inspection Rating” given by the HFEA as well as view the “Patient Rating.” These ratings are shown side by side for comparison, which is a great feature to quickly gauge how a clinic is doing overall. But keep in mind that the pool of patient participants can greatly affect the patient rating. Fewer patient ratings can equate to less reliable of a rating due to the smaller pool of people. Two bad ratings with a small pool of say five people can dramatically change the rating. Another nice feature is that you can click “View birth statistics” then “View detailed statistics” to use their filters to narrow down categories such as age and treatment type. 

 

HFEA

 

Links:

Human Fertilisation & Embryology Authority (HFEA): https://www.hfea.gov.uk/

https://www.hfea.gov.uk/choose-a-clinic/clinic-search/results/9141/

 

#5

CARTR (Canada)

The Canadian Assisted Reproductive Technologies Register (CARTR) is where the data can be found that is reported by the Canadian Fertility & Andrology Society (CFAS). The CFAS was originally founded prior to the invention of IVF and initially it focused studying infertility. You can view the CARTR Annual Reports here. The annual reports are useful for looking at the overall picture of ART statistics gathered in Canada. The reports do not show individual clinic success rates and currently there does not seem to be a website that Canada has to compare clinics. 

 

CARTR

 

Links:

CARTR Annual Reports: https://cfas.ca/cartr-annual-reports.html

Canadian Fertility & Andrology Society (CFAS): https://cfas.ca/index.html

 

Additional resources to find clinics in Canada:

Fertility Clinics: http://www.fertilityclinics.ca/

Infertility Network: https://www.infertilitynetwork.org/fertility_clinics_cda

 

#6

EIM & ESHRE (Europe)

European Society of Human Reproduction and Embryology (ESHRE) focuses on testing and research and publishes their findings for members to access on their website. ESHRE created the European IVF Monitoring (EIM) to gather the data as part of their publications. Similar to Canada’s CARTR Annual Reports, there is not a comparison of individual clinic’s success rates but rather an overall look at the data compared as a whole. You can view the annual publications of the reports here

 

List of Included Countries with EIM:

Albania

Armenia

Austria

Belarus

Belgium

Bosnia

Bulgaria

Croatia

Cyprus

Czech Republic

Denmark

Estonia

Finland

France

Georgia

Germany

Greece 

Hungary

Iceland

Ireland

Italy

Kazakhstan

Latvia

Lithuania

Macedonia

Malta

Moldova

Montenegro

Norway

Poland

Portugal

Romania

Russia

Serbia

Slovakia

Slovenia

Spain

Sweden

Switzerland

The Netherlands

Turkey

Ukraine

United Kingdom
ESHRE 2014 Publication on ART in Europe - Edited

 

Europe data

 

Links:

European Society of Human Reproduction and Embryology (ESHRE): https://www.eshre.eu/en

European IVF Monitoring (EIM):

https://www.eshre.eu/Data-collection-and-research/Consortia/EIM

 

#7

GCR (Worldwide)

I had issues at first navigating the Global Clinic Rating (GCR) website. But once I figured out the problem I was able to access some helpful information. Their search fields on their homepage were not setup correctly. I would type in “IVF”in the first field and it would automatically send me to the clinic of IVF Spain’s rating page, even when I had not entered a location yet. Finally I figured out that I needed to type in “fertility” in the first field and then I typed in the location in the second field. There were a few times I typed in IVF and I ended up with a list of dentists. If you run into issues with your search try slightly adjusting your search terms to see if you get the result you wanted. Although initially very frustrating, I found the site helpful once I figured out the specific terms needed they actually accept.

 

Some locations seem to have much more detailed reports and reviews from many patients, while other locations are significantly lacking data and reviews. Depending on the popularity of your clinic, you may find this site useful. If you cannot find as much detailed information I would suggest viewing this site as more of a supplemental source of information. 

 

GCR

 

GCR Clinic pt 1

 

GCR pt 2

 

GCR pt 3

 

Link:

Global Clinic Rating (GCR): https://go.gcr.org/

 

Comment below on Today’s Question and receive bonus entry into the current contest.

Today’s Question: What are some of your go-to websites to learn about infertility solutions?

 

Thank you for reading. 

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

ENTER TO WIN THE LATEST HOPINGFORBABY.COM CONTEST.

 

Learn ways to improve your egg quality. Purchase Rebecca Fett’s book “It Starts with the Egg: How the Science of Egg Quality Can Help You Get Pregnant Naturally, Prevent Miscarriage, and Improve Your Odds in IVF.” It’s currently the #1 Best Seller on Amazon.com’s Reproductive Medicine & Technology list. 

HopingForBaby.com’s Beginnings

HopingForBaby.com’s Beginnings

I started my blog HopingForBaby.com in March 2018, almost two years into our infertility struggles. At the beginning, my blog was anonymous, like many infertility bloggers tend to start out. I just wanted a place to freely write what was on my mind and to help me cope. I love to write and I’ve always found writing to be cathartic. In my day-to-day life more of my friends and family were opening up about their infertility and miscarriages. I began to feel less alone and felt more support in “real life.”

After a little while I built up the courage to post a picture of myself in my blog. It brings a smile to my face when I see more and more infertility bloggers step out of the shadows and actually post pictures of themselves. It is such a simple act that helps to break down the silence surrounding infertility as well as the stigma. Posting a picture is a way to say, “This is who I am and this is my story.” This allows other people dealing with infertility and pregnancy loss to know they are not alone. Before I actually started this blog I was incredibly inspired by infertility bloggers who not only wrote their story but also took to YouTube and created podcasts. 

high-res - Edited

So how did I choose the name of my website and my motto? The title of my website is pretty self-explanatory, “Hoping For Baby” is about the dream many of us share to have a child. I also chose this title because I wanted it to be flexible enough to allow for a future where I could write about a biological baby and/or an adopted baby. I don’t know what my future holds, and I may truly be unable to have a biological child. In that case, I would probably shift gears with my blog and write more about adoption or fostering. But for now, I am focusing my efforts on trying to have a biological child, hence all of my posts are related to this right now. 

The motto “Overcome Infertility & Create a Family” also has a double meaning. I chose “Creating a Family” as a flexible phrasing to allow for the many possible ways one can create a family. Whether it’s biologically from both parents, an egg donor, embryo donation, fostering, or adoption, etc. There are so many different ways to create a family. As far as “Overcome Infertility” most people may assume this to be literal, they may think of the steps to get them to their end goal of a biological child. 

But life isn’t always that simple, and sometimes people decide to stop pursuing a biological child. In this case, the idea of “Overcoming Infertility” takes on a new meaning. It can mean overcoming all of the emotional, physical, relationship, and financial struggles that come with infertility. You can overcome infertility by letting go of the pain and focusing on what is really important to you. One person may decide overcoming infertility means they can now move on to the idea of adoption, while another may decide that they would like to live child-free. For most of us with infertility, there is no straight path to parenthood, and there is nothing wrong with that. 

bath-ducks-bathroom-bathtub-226597

And on a final note, I chose to incorporate a ducky in my logo for a special reason. I started a little habit a few years ago, whenever one of my friends had a baby shower I would get them a rubber ducky to include with their other baby shower gifts I bought for them. I was doing it for everyone to where I told myself, “Don’t forget the rubber ducky!” In my mind the rubber ducky became synonymous with the celebration of new life. Plus it’s just so darn cute!

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Question of the Day:

Do you have your own infertility blog? Feel free to share a link to your blog. Who are some of your favorite infertility bloggers that inspire you and why?

Comment Below.

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Week 10 of Pregnancy: 6th Miscarriage

Week 10 of Pregnancy: 6th Miscarriage

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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Week 10 of Pregnancy: Yuckiness

Week 10 of Pregnancy: Yuckiness

(Entry written prior to posted date)

Date Written: 9/10/19

 

PLEASE READ FIRST: Although this pregnancy ended in a miscarriage, I still wanted to share my experience of this pregnancy. I wasn’t ready to talk about my pregnancy as it was happening, so I wrote this entry prior to the date it is posted.

 

Right now I’m in the middle of my 10th week and feeling extremely tired and nauseous. I threw up only one day so far, but six times in that single day. I’ve learned that I need to be constantly snacking on things every 3 hours or so in order to prevent nausea. Saltine crackers first thing in the morning has really helped me. I think that I do feel the worst in the morning but it doesn’t go away during the rest of the day either. My husband bought me some ginger root and ginger ale that I think has been helping me. I’ve been making ginger tea out of the ginger root. 

 

I’ve never felt this tired in my life. Just totally wiped out and have zero motivation to get anything done around the house. If I’m not at work I’m a total couch potato at home. Speaking of potatoes, I’ve been craving them constantly! I must have some form of a potato daily. I haven’t been able to eat an entire meal lately because of the nausea, mostly half meals or smaller. 

 

img_20190917_144048

Started Methylfolate at beginning of pregnancy and Baby Asprin more recently.

 

Last week I was waiting to hear back from the geneticist about whether I should take Lovenox and if there was anything else I needed to be taking for my specific type of MTHFR gene mutation. She said that I do not need to take Lovenox and that Methylated Folate and a Baby Aspirin should work fine for me. Please speak with your doctor about your specific treatment plan, don’t just follow mine. My geneticist talked to me about my particular MTHFR gene mutation, C677T heterozygous single variation, and said, “It’s fairly benign” and “it’s actually pretty common, with as many as 50% of the population having this kind.” I’ve heard this statistic about a large part of the population having it, but it was the first time I was told it was “fairly benign” which I guess is a good thing, but if it’s the main contributor to all my miscarriages I would not categorize it as “benign” at all. One of the definitions of benign is “not harmful.” I’d say this is pretty damn harmful. I guess we will find out for sure whether my Methylated Folate and Baby Aspirin is what finally makes the difference with this pregnancy.

 

img_20190906_203329-1

First ultrasound from week 9 of pregnancy. Looks like a little blob, but ultrasound tech showed me the head on the right side. Heart is beating strong at 155 bpm.

 

I have my ultrasound this Friday and I am kind of stressed about it, most of my past ultrasounds are always bad news. I feel like I will absolutely be blown away if my pregnancy is still continuing to be healthy. I’m still shocked that I’ve made it to week 10 without any issues other than feeling nauseous. This is the first pregnancy where I’ve been incredibly nauseous which I hear is a good thing. One other difference about this pregnancy is I haven’t spotted at all, which I did in all my other ones I miscarried.

 

I decided to let my two supervisors and HR know about my pregnancy. It’s a little earlier than I was planning to do after the first trimester. But because I’ve been feeling so cruddy and it’s been somewhat affecting my work performance, I thought it would be better to speak up about it. I’m glad I did because shortly afterward one of my coworkers confronted me about not helping with a cleaning project. I felt like every smell in the building was about to make me projectile vomit. I figured by the end of the shift I’d start to feel better but I didn’t. So my attempt to clean would most likely have ended up with me also cleaning up my vomit. I figured some people would be grumpy with me not doing everything I normally do, but I’m not ready to announce my pregnancy. It just feels too early for me. Part of me wants to explain why I can’t lift heavy things and why I seem very immobile these days, but I want to protect my privacy a little longer from my coworkers. 

 

Even if this ultrasound on Friday shows that everything is perfect, I’m still hesitant to share the good news. Although I originally planned to announce to everyone at the end of my first trimester, I kind of like keeping this to myself right now. If I lose the baby I’ll have to explain to so many people about it. And even if everything goes well, I don’t really want people asking me a lot of questions about the pregnancy. For now at least, I’m just not ready for that. I’m considering keeping it to myself until I start to show. I even had the idea to wait long enough until I’m clearly showing, then place my bets on who will ask me if I’m pregnant first. I think I might find that kind of entertaining, plus it will buy me some time to keep it to myself a little bit longer.

 

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Week 9 of Pregnancy: Top Secret

Week 9 of Pregnancy: Top Secret

(Entry written prior to posted date)

Date written: 9/3/19

 

PLEASE READ FIRST: Although this pregnancy ended in a miscarriage, I still wanted to share my experience of this pregnancy. I wasn’t ready to talk about my pregnancy as it was happening, so I wrote this entry prior to the date it is posted.

 

I’ve decided this pregnancy needs to stay a secret from pretty much everyone until I at least pass my first trimester. This is proving to be difficult while I continue to write posts about other things going on simultaneously. For example, while I was waiting to get tested for the MTHFR gene mutation and when I got my results what I didn’t tell you all is that I was mostly there for testing my HCG levels because I was pregnant. Sneaky, sneaky. I so wanted to share the news because I was so happy but I ultimately chose to wait because I wanted to not deal with the questions I would get. I tend to be OCD at times and I overly research the s**t out of things enough as it is with this pregnancy, almost to the point of neurosis. So I really didn’t want to have the added stress of other people’s questions and worries on top of my own. For this pregnancy it was more of a strategic stress management decision. I wanted to reduce my stress as much as possible. I’ve decided to keep this news to myself until I feel comfortable to share it, which in all honestly will probably be sometime during my second trimester.

 

I just got off the phone with the office of my geneticist. My OBGYN doctor referred me there since I was found to be positive for the MTHFR gene mutation. So my geneticist’s office has been playing phone tag with my OBGYN office and apparently didn’t have a clue why I was referred to them. So I had to explain to them that I was pregnant, had the MTHFR gene mutation and needed to find out ASAP whether I should be taking Lovenox or not. So I’m still waiting to hear back. My OBGYN didn’t seem too sure whether I should be taking a Baby Asprin or not, so I decided to continue taking it since I’ve read that it probably wouldn’t do any harm if I took it but didn’t need it. 

 

As far as how I’m feeling, well imagine that every ounce of life has been zapped from your body and that’s pretty much what I’m feeling. I have zero energy, and I mean zero. It takes a decent amount of energy just to get up and get something to eat. I’ve been parked in front of the TV so much my body aches until I force myself up and stretch while I reach for a small snack. I’ve been eating like a bird, very small amounts but frequently. I’m eating frequently because my nausea has been absolutely terrible and the only thing to keep it at bay is to have a little snack in my stomach. I don’t eat full meals much, and if I do it takes me forever to eat it all. I definitely have morning sickness when I wake up. Needless to say Saltine crackers have become my new best friend. We bought a Costco sized box of twelve sleeves of crackers which will probably last me just a couple weeks. 

 

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Positive Pregnancy test on July 26th.

 

A couple years back I was eating a snack at work and my coworker’s face lit up and she said, “Oh my God! You’re pregnant!” I was so confused how the comment came seemingly out of nowhere. “Uh, no, just hungry. I haven’t eaten yet today” I said. She pointed to my snack as if I should have known I was pregnant just based on what I was eating. I was so confused and asked her why she thought I was pregnant. She explained that I must have been because I was eating Saltine crackers and that no one eats Saltine crackers unless they are pregnant. I explained to her that I like salty snacks and that I figured it was better than potato chips. It took a while to convince her that I was not pregnant. Knowing that some people so strongly associate these crackers with pregnancy is going to be a problem for me while I try to keep my current pregnancy under wraps. They are the only thing keeping me from being barfy. Granted I no longer work with that person, but I am a terrible liar and need to figure out how to maneuver around this possible question. Mamma needs her Saltines! 

 

As far as emotionally, I’m excited that this pregnancy has been going well so far. I’ve had no problems at all other than some random sharp pains. But my baby’s heart is beating well and it’s measuring perfectly on track with the ultrasound. Kurtis had to work that day so I’m hoping he and I will be able to actually see the heartbeat the next time we are there. And maybe we can actually make out some body parts instead of it appearing like a blob where it’s hard to even tell where the head is. I’m counting down the days. We are doing the appointment and ultrasound on Friday the 13th. I hadn’t really thought that one out, but I figure with the terrible luck I’ve had in the past maybe I should play the “opposite game” and stick with that appointment date. Maybe our little one will be just as healthy and strong as it was with the first ultrasound but bigger. 

 

I’ve been using the Ovia Pregnancy app on my phone. I love that app because it gives an adorable cartoon rendition of what the baby looks like at each week of the pregnancy. It also tells you what size the baby is, mostly in fruit, but this week my baby is the size of a southern pecan according to the app. It even shows you the actual size of the baby’s hand which really adds to the cuteness factor and will make anyone go “awww.” 

 

As much as I want to be in the moment I also really want this first trimester to fly by, so I can feel some sense of security knowing the miscarriage risk is lower. I know you can lose a baby at any point during the pregnancy. But to get past the first trimester would be amazing and surreal, because I’ve had that chance. Even now, when I think about how this time next year I could be cuddling with my baby, it seems very surreal. The best way I can describe it is when you have such a strong dream in your heart, but you’re told it will never happen, and then way later down the road it suddenly becomes a possibility. It’s hard to fully embrace that reality when you feel like it can be ripped out from under you at any point. But I still carry on and try to stay optimistic.

 

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MTHFR Gene Mutation Test Results

MTHFR Gene Mutation Test Results

Today’s post will make more sense if you read my last one. So rather than recap everything again that lead up to these results you can go ahead and read that one by clicking here. I may have called the clinic three times to ask about my results over this last week. No one seemed to have a time frame for me of when to expect the results and they said, “This test takes a little longer.” 

 

Finally my doctor called when I was in a Wendy’s drive through with my Mom who was driving, I was visiting her that day. I had my phone up to my one ear, and my finger in the other ear trying to block out all the unusually happy workers inside who were all laughing hysterically about something for what seemed like five minutes straight while I was on the phone trying to hear what he was saying.

 

“You tested positive for the MTHFR gene mutation,” he said. He went on to explain some details that I wasn’t able to grasp in the moment, probably due to a combination of not hearing him and not actually processing all the info. I had to call him back later to actually write down what he was trying to explain to me. He said I have the “MTHFR gene mutation C677T heterozygous single version.” He thinks that some of my miscarriages may have been caused by this gene mutation. Essentially, when you have a MTHFR gene mutation your body cannot process folate well, which is an incredibly important vitamin that helps the baby grow properly. 

 

I had very conflicting emotions with this news, mostly a combination of anger and relief. I was so angry that none of the doctors had realized this earlier, and that one doctor mistakenly told me that I was negative for this gene mutation when she really meant to say I was negative for Factor Five. So I went on to tell my next doctor and several other medical teams I was working with that I did not have MTHFR, going off what she had told me. Sadly, none of these doctors thoroughly looked into my file. Had they done so I may not have had to deal with 2.5 years of five miscarriages and paying for IVF. 

 

I’ve heard stories of women who’ve suffered through many miscarriages before their doctor tested them for MTHFR gene mutation. When they discovered they had it, they were put on the proper medication and vitamins and boom…they have a healthy baby in their arms. I pray it will be that simple for me as well, but I also have Low Ovarian Reserve so it probably won’t be that easy. On the other spectrum of my emotions, I am feeling so much relief knowing that a huge missing puzzle piece has finally been found. But to be honest it is going to take a while to get over my anger. I think in time I will get over it, but right now it is pretty difficult.

 

I sat at Mom’s dinner table and talked about the news with her. She was the one that had mentioned to me several months back my Aunt has the MTHFR gene mutation. This perked my ears up because I remember hearing that acronym as part of the fertility tests I thought I took early on. I explained to Mom, “Had you not told me that, I would not have double checked that I actually got tested for it.” Mom got kind of teary eyed and said something to the effect of, “I didn’t even realize that was something related to fertility.” In other words, Mom had no clue the wheels she had set in motion for me. But I’m glad that she did. I’m also glad that my Aunt spoke up about her medical issues that were caused by the MTHFR gene mutation. Those conversations led me to my diagnosis that could help with my fertility, and ultimately help me to have much greater odds of having a baby.

 

I am brand new to this diagnosis so I have much to learn about it. I’ll probably do informational posts on it in the future. One thing I mentioned to my Mom is that I learned the MTHFR gene mutation has been correlated to some cases of cancer. So my diagnosis has sparked her curiosity into whether she may have the MTHFR gene mutation as well. She has beat cancer twice already and is the strongest woman I know. She said she would look into testing. It’s kind of surreal to finally have a concrete answer as to why I have recurrent miscarriages, and even more so surreal there may be a simple solution of medicine to help me. My OBGYN referred me to a geneticist that I should be seeing soon. Maybe next year we will finally have our little one.

 

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A Doctor’s Mistake & Possible MTHFR Gene Mutation

A Doctor’s Mistake & Possible MTHFR Gene Mutation

So I’m waiting, and waiting, and waiting still for my MTHFR gene mutation test results. Technically, I’ve been waiting about 2.5 years and just didn’t realize it. “How is that possible,” you may ask. Let me take you back to the beginning. Doctors typically look at the more common explanations for recurrent pregnancy loss with the basics; thyroid, progesterone, Rh factor, Factor V Leiden, and MTHFR to name a few. These basic tests help determine the correct treatment, and ideally prevent unnecessary heartache from miscarriage after miscarriage. If all of these tests are negative then further more in-depth testing can be done.

 

I vividly remember sitting in my first RE’s (Reproductive Endocrinologist) office years ago and hearing her explain my results to me. One by one she read my results while reading a paper from my file on her lap, “Thyroid is good. Progesterone is fine. Rh factor is positive, so that’s not an issue at all. No Factor Five and no MTHFR.” No MTHFR. No MTHFR. That’s what sticks out in my mind all these years later. I can still see her smiling at me optimistically, which I’m sure she wouldn’t be doing the same thing now had she seen everything I’ve been through over these years. But she retired shortly after I began my treatment with her. She was a nice lady, but in hindsight she seemed a little flaky and unfocused. But back then I attributed her forgetfulness of the details of my medical history to what I’m assuming was a high number of patients she was juggling. 

 

Flash forward 2.5 years later to now. That first RE retired, my second RE retired this year, and my info was passed along to an OBGYN office in the same building. I called my insurance company and learned there isn’t a single RE left in the state that is in-network any longer. So I’m shit out of luck as far as getting a specialist who is properly trained in cases such as myself. What does this leave me with? In the new clinic I did what most of us do, ask a lot of questions in hopes they will be able to give us breadcrumbs to the solution. It felt like pulling teeth with this one though. She seemed mildly irritated with each question I asked. What she didn’t realize is that she was sitting in an interview for a position that can mean life or death. Not to be melodramatic, but that’s truly the reality of what I’m dealing with, the life of my future child. 

 

I had high hopes for this young representative of this OBGYN office who my newly retired Reproductive Endocrinologist highly recommended. But my final question I posed to this fresh-faced doctor was what truly sealed her fate. It was basically a set up, I’ll admit, but I had to ask it to truly learn what I was working with. I asked her, “What do you recommend I do to improve my egg quality?” Mind you, I have recently done a massive amount of research on this subject this last year, from reputable medical journals and some of the most well-renowned books published on the subject, including the book “It Starts with the Egg.” I’ve already put into practice some of the medical advice on the subject. 

 

“Well” she starts, “We are born with a certain number of eggs. We can’t change that. And sometimes miscarriages just happen. There’s nothing you can do about it.” I could tell she says this quite often. Her face was completely blank and her eyes seemed distant like she was trying to figure out what she wanted to order for lunch. Her words may have been consoling to someone who might be experiencing their first miscarriage, in fact I know I’ve heard this before from another doctor I stopped seeing years ago. When I get a gut feeling that a doctor isn’t doing everything they possibly can, I usually move on to the next one, as anyone should. 

 

So what exactly was it about her response that pissed me off. Well she didn’t answer the question I actually asked her, for one. I asked about egg quality, not egg quantity. I know there’s absolutely no way you can increase the number of eggs you have. But I do know that there are studies on how to improve egg quality on the eggs that you have remaining, which can increase the odds of a live-birth. The problem with her answer to me is that she was either one of two things, 1) Not paying attention to my question, or 2) Uneducated on the correct response. To her credit, she contributed one solid lead for me to follow, with a different doctor of course. That lead was that she had looked through my entire file of many documents and found no MTHFR results. 

 

Interesting, no MTHFR results. Could this just be an oversight on her part? I hoped this was the case. One of my Aunts recently told me she has the MTHFR gene mutation and she was telling other family members to get tested for it. Because of this, I decided I should double check that I truly am negative for the MTHFR gene mutation. If you haven’t already googled what the MTHFR gene mutation is, it’s essentially a mistake that occurs in how people process folate which can lead to a variety of complications, recurrent miscarriage being one of them. The doctor’s parting words were, “You don’t need to get tested for MTHFR. Just make sure you take a prenatal with folate.” Let me disect this response as well, firstly if I did have MTHFR, it’s recommended that you take methylated folate during pregnancy, which is often not found in your basic prenatal. And why the hell would I not want to get tested for MTHFR if I have a family history of it and I’ve had five miscarriages? Why would I not want to find that out? At that point I thanked her for her time and we both left the room quickly. I’m assuming for her it was because her stomach was rumbling and she needed lunch, and for me I left quickly because I knew I wasn’t going to waste another minute with someone who seemed disinterested in helping me. I later read in my infertility groups that many other women have the same experience of a doctor being dismissive of their request to test for MTHFR and that some patients really have to push doctors to get this test done.

 

I called back a few days later and asked the receptionist to patch me through to a nurse. “Can you see if I have been tested for MTHFR at all?” I wanted to know for absolute certain that I had not been tested for MTHFR, because I was questioning how thoroughly the doctor read through my file. The nurse on the phone scoured through my medical history, I know this because I could hear her turning the many pages of my file. Finally after about five minutes she said, “Well I see here you were tested for something similar to MTHFR, Factor Five. But nothing at all on MTHFR.” She even reviewed my genetic test called a Horizon panel, which tests for 274 different genetic carrier diseases that both my husband and I took years ago. The MTHFR test wasn’t in that one either. She asked if I wanted to come in to get tested for it and I agreed, but later decided not to show up, remembering the shitty experience I had with that doctor. I thanked the nurse for her time she put into carefully poring over my file. I decided to use this bread crumb of information to move ahead, but not with them.

 

Instead of feeling obligated to continue care with that provider just because my previous Reproductive Endocrinologist recommended them, I decided to call up my OBGYN I used for my past surgeries after I lost my pregnancies. He previously recommended I ask most of my questions to a specialist, a Reproductive Endocrinologist, because he didn’t have all the information I was asking about. But now that I have zero RE’s that are in-network, I decided to go back to his office to at least test me for MTHFR. So I stopped by, did a quick blood draw, and now I’m waiting for the results. I’ve been waiting about five days now and I called several times. They said it takes a bit longer to get that specific test back. 

 

If I have MTHFR I can get set up on a treatment plan. If I don’t, at least I can finally rule that out. I feel I have a right to be angry, I was told I was tested for it but I really wasn’t. My second RE even asked me, “Have you been tested for MTHFR?” as she was looking through all my documents. I told her I was tested and found to be negative, because I was going off what my first RE told me. My second RE stopped searching through my file after just a few pages and took my word for it, she should have looked more deeply into it. Admittedly, my file is quite intimidating. It’s about as thick as a 500-page novel. Maybe that’s why she decided to stop short. There were a series of oversights along the way, and that is what bothers me. 

 

I believe this is not just a personal issue either. I feel that if this can happen to me, it is also happening to some of you as well. What would I have done differently if I were to do it over again? I would have examined my own copy of my file yearly, looking for any gaps in testing. But in the beginning you trust your doctor, you trust the process, and you believe you are doing everything you can. But doctors make mistakes, sometimes major mistakes. Sometimes you can’t take their word on something and you need to see it in writing in your hands. I wish I would have asked to have a copy of the test results and actually see the words MTHFR Gene Mutation on the paper. But that paper doesn’t exist because neither did the test. 

 

Throughout this whole process I’m learning to do my own research and take initiative. Because if you just go with the flow of whatever the doctor says you may end up so far away from your solution. Speak up and ask for the testing you need. If your gut tells you, “They don’t know what they are doing” listen to that instinct and find someone who at the very least listens to you. Because if they truly listen and still cannot help you at least they can hopefully point you in the direction of where to go instead.

 

I will let you all know as soon as I get the results from my MTHFR test. For now, I’m considering seeing the highly recommended RE that is not in-network with my insurance. Perhaps she has some advice that can actually help me achieve my dream of having a baby. I told myself I would pay off my debt first before I go down and do the Frozen Embryo Transfer in Seattle. I still have a good chunk of debt left to pay that feels like it’s turning into a Whack-a-Mole game, pay off one bill only to have another equal or more expensive one appear in my mail. I’ll get there eventually. 

 

I’m still exhausting every single possibility of trying to have a biological child. So for all of my family and friends saying, “Why don’t you just adopt?” or “Why don’t you just foster?” I humbly say to you, in time I will, but I don’t want to split my energy in different directions right now. I want to focus on one thing at a time. Some acquaintances I meet ask why I don’t have kids yet. I don’t feel obligated to give them my medical history so instead I give them the canned response of “We’re trying.” The more brazen acquaintances then jokingly say, “You don’t have much time left. You better get on that.” It’s at this point I imagine myself as Mike Tyson punching the shit out of them repeatedly in their smug face, and maybe biting a piece of their ear off for good measure. I’m joking, sort of. But unfortunately they have a point. I’m 33 and I don’t have much time left, which is compounded even more so by the fact that I have Low Ovarian Reserve. So right now this is my focus and I’m doing everything I can.

 

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Choosing Happiness Despite Circumstances

Choosing Happiness Despite Circumstances

In one of my infertility groups I read a post from a woman who struggled with multiple miscarriages and failed IVF rounds. She sounded exactly like how I feel, occasionally sad and confused about what will happen next. She asked a very profound question: “How do I get my happiness back?” So many women in the group seem to relate happiness with the end result of a baby. But she asked this question relating it to what she herself can actually do, regardless of whether she continues or discontinues her fertility treatment. A new daily goal of mine is to continually work on creating happiness for myself and from within myself. You are setting yourself up for disappointment if you rely on external events to bring you happiness. In other words, it is still possible to be happy and content even if you cannot create a family right now.

 

I wrote the following response to the woman’s post about her question of how to find happiness through all of this: 

 

Sometimes taking a break from planning fertility things, even if it’s just for a month or two can bring much needed peace. I’ve experienced a lot of loss and disappointment as well: 5 miscarriages and 1 failed IVF round. So many of us are right there, feeling exactly like you are. I feel the same way too. Your honesty with your post helped me to feel less alone. Take the time to take care of yourself and do the things you enjoy, whether it’s going for a walk, listening to music, journaling, talking with friends, etc. I need to do the same as well. Even in our uncertain times we can make choices to build ourselves up, even if we have to drag ourselves out of bed to enjoy the world outside. For me, doing the opposite of how I feel sometimes helps. If I want to binge watch TV or oversleep beyond what is normal, I try to force myself to go for a drive or be out in nature. The other day I was depressed and only wanted to zone out in front of the TV but I instead went out for a hike. I saw for the first time in my life a mountain sheep very close. Had I not forced myself to get outside I would have missed out on that amazing experience. For me that was a taste of what I could be missing out on if I continue to sit inside and be depressed. I hope you can push yourself too to find what helps you heal.”

 

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A rare find, mountain sheep watches us as we hike.

 

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Book Review “It Starts with the Egg” by Rebecca Fett

Book Review “It Starts with the Egg” by Rebecca Fett

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HopingForBaby.com Rating: 5 out of 5

Rebecca Fett, writer of “It Starts with the Egg” knows her stuff for sure. Fett is a molecular biologist who understands how the body functions on a cellular level. When faced with her own infertility issues she used her education and research skills to have a successful birth, and shared her extraordinary amount of information for other women to use in her book. She has held the top selling rank on Amazon.com in the Reproductive Medicine category. I’m a member of multiple infertility groups on Facebook, and I continually heard about this book over and over again. The women were very enthusiastic about the book and it was always highly recommended. Many women who spoke endless praises of “It Starts with the Egg” were saying that they were able to finally make their dream of having a baby a reality.

I will not go into detail on all of the topics covered because all of the information and credit goes to Rebecca Fett. Whether you get it from the library, book store, e-book or audio format (I personally love Audible), you have got to read this book. The book is organized into categories for the particular type of infertility issue that one might be facing. For example, I have low ovarian reserve and I’m doing IVF, so I choose to follow the Advanced Plan in her book. There is also a plan for those with PCOS. Some women have been facing infertility for unexplained reasons for a while but they don’t want to do IVF, there is a plan for that as well. Let me also add that you MUST speak with your doctor about your treatment plan and don’t solely rely on the book, because you may have a medical condition that is affecting your infertility that could easily be tested for. In other words, you may think you have “unexplained infertility” but perhaps a simple blood test will explain what is really going on.

I was honestly in a very low place before I started to read this book. But this book has given me a lot of hope because it gives great tangible advice that someone can start right away to improve their odds of success. For example, there is a plethora of information on supplements Fett shares, rooted in case studies that show positive correlations for success. 

I highly recommend you get a copy of her bookOne major change I did right away was to get rid of my plastic dishware and replace it with either glass or stainless steel items. This was the first thing I did and I felt a sense of accomplishment knowing I was taking the first step in reducing my use of products that can have  endocrine disruptors, which can impact fertility. From there, I also changed my make-up and beauty products that had high levels of dangerous chemicals. I recommend using the “Think Dirty” app that allows you can scan the barcode on beauty and cleaning products and shows you if it is dangerous or not. I’ll be doing a more in-depth post in the future on that subject. I’ve been eating healthier and following the food suggestions outlined in this book as well.

So all the talk is true is true ladies! Rebecca Fett has gathered so much information and created an excellent resource for those of use struggling with infertility. This book has actually inspired me to research even more health-related topics. I guess you can say I’ve become quite the health nut this past month. Another added benefit of following her advice is that you are lowering your risk for major health related issues if you follow the dietary suggestions. Reading her book has empowered me to make real changes and was it was the catalyst for me to begin living a healthier lifestyle. You’ve got to read this book!

Purchase your copy now of “It Starts with the Egg” by Rebecca Fett by clicking here.

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