A Conversation in the Shadows: IVF Resources

Stigmatized with the dirty word of “infertility,” IVF is not openly discussed. When I first began this undertaking, I quickly realized the dearth of reliable information on this subject and the reluctance to address it in mainstream discourse. Like thousands of other women, I turned to the online fertility forums to crowd-source information. Author Kat Lister from Vice accurately sums up this experience:

“Behind closed doors, online message boards quickly became my main source of real dialogue and reassurance. IVF, like infertility itself, is a whispered anguish. For many women, in vitro is yet another experience that is endured silently, without complaint.”

Like hushed “period talk” in the hallways of high school, infertility conversations are kept below board and out of sight. Women are so good at communicating in these shadows – we are taught this from a very young age.

Women are so good at communicating in these shadows – we are taught this from a very young age.

My IVF clinic provided an hour-long “teach class,” where a bored-looking nurse reviewed the basic facts of an IVF cycle in five powerpoint slides. My insurance provider paired me with a “Reproductive Services Nurse,” who called me for a one-time IVF “therapy” conversation, before cheerfully exclaiming “Good Luck with everything!” –  never to be heard from again. My Dr. (although knowledgable and polite) is busy and brief, sticking to the immediate facts of my case, reluctant to delve into anything more.

It simply isn’t enough.

As my IVF journey stretched out before me, and I had more questions than ever, I couldn’t help but ask: Is this it? Are my basic queries about my body and medical science to be shared and answered by the unmonitored “hivemind” of a digital forum?

Although they have – and still do – provided me with an abundance of information and support, the forums shouldn’t be the only place we gather to garner our data regarding this highly-invasive/expensive/technical/emotional undertaking. In no particular order, here are the other places on the Internet that I have found the most helpful.*

 

Start Here: 

• RESOLVE – The official site of the non-profit National Infertility Association. RESOLVE offers free information, support programs, legal support, volunteer opportunities, help lines, and more. Sign up for their newsletter and start your journey here. It’s a informative, supportive community that I find myself coming back to time and again.

Informational Sites:

• Advanced Fertility – Chalk full of helpful information, this is the official site for the Advanced Fertility IVF Clinic in Chicago. While not the most modern site on the internet, it continuously popped up in my Google searches and I found myself referring to its data and recent studies for topics such as:
  • Day 3 FSH and Ovarian Reserve
  • Antral Follicle Count
  • IVF Protocols & Drugs
  • Embryo Grading
  • PGD/PGS testing
• NYU Langone Fertility Center – A step-by-step IVF overview plus a very helpful breakdown of the embryo’s journey and process post transfer. One of the only resources that exist on the Internet for post transfer, this list referred to as the “gold standard” across all IVF forums. 
• Mayo Clinic IVF Overview –  I found their overview and illustrations on the egg retrieval process particularly helpful.
• Female Hormone Levels – Estrogen, Progesterone, LH, FSH. Who knew we had so many hormones rising and falling all at once? Since you’ll be getting these hormone levels checked before, during, and after the IVF cycle, it’s good to know the average ranges of where you should fall.
•  Coffee, Alcohol, Exercise – When can you? / when can’t you? This is probably one of the most searched IVF queries on Google. I’ve found a lot of varying, non-conclusive information, but think that this site sums it up best. This article on coffee is also very good. Also, this coffee consumption study, which basically concludes: Do you drink more than 5 cups of coffee a day? No? Then you’re fine.
• Myths & Facts About IVF Success – I find most articles of this ilk to be click-bait headlines with little information, but this one actually delivers some helpful myth-busting tips supported by facts.
• The Significance of Monitoring Infertility Treatments – An informative overview of the follicle stimulation process and what your Dr. is looking for during those daily monitoring sessions.
• hCG Injection – The “trigger shot” is the last step before egg retrieval, but why do we use hCG and how does the timing work? This article clarifies the science behind the trigger shot.
• hCG Levels – This article provides a helpful table documenting normal hCG level in early pregnancy by week of gestation after conception. I read this article over and over after my first frozen embryo transfer.
• Pregnancy Testing – Ever wonder what’s really the best home pregnancy test on the market? I did! This very helpful study by Consumer Reports confirms where to put your dollar when it comes time to buy the HPT. (Spoiler Alert: It can

  can detect hCG at concentrations as low as 6.5 mIU/ml (thousandths of an International Unit per milliliter) in your urine!). This data is conclusively backed up by this medical study. 

• Causes of IVF Failures – Unfortunately, IVF does not have 100% success rates. Here’s a good source of information describing why.

Books:

• IVF For Couples – From Amazon’s synopsis: While dry, clinical information is available, there is a gaping need for sisterly advice from someone who’s been through the process herself. From evaluating care and preparing for the complicated process to understanding egg retrieval and embryo transfer; from tips on taking medications and coping with hormonal surges to dealing with the emotional aspects of the grueling IVF process, Liza Charlesworth’s The Couple’s Guide to In Vitro Fertilization offers knowing, sensitive counsel.
• The Gene – Although not directly related to IVF, this book covers the discovery of the gene and the progression we’ve made thus far through medical science. Since we are specifically doing IVF for a genetic reason, this book was of special importance to me. It’s also fascinating!

Blogs/Online Communities:

• Shady Grove Fertility Blog – This blog does a fantastic job of covering a wide array of topics regarding IVF. I subscribe to their weekly newsletter.
• Fertile Girl – This woman-run website started as an online community for women on their infertility journeys to share their stories openly and without fear of stigma. It has since evolved into a consumer foods brand that empowers women to take control of their nutrition by making healthy choices during the pre-pregnancy period.
• Pregnantish – This site is dedicated to helping people navigate the emotional, personal, and practical realities of the overwhelming IVF process.
• The Infertility Voice – An online hub written for the infertility community – by the infertility community. Although the founder of this site has stopped actively blogging, the collection of helpful resources and stories that the site has accumulated since 2009 is extremely valuable.
• IVF Babble – A U.K. based infertility site that features loads of helpful articles, videos, and community stories.

Medical Videos:

• Implantation Behavior– A scientific look into the mechanisms behind implantation brought to you by Khan Academy. Khan Academy provides free medical tutorial videos and I have watched dozens of them! I strongly recommend. <3
• Fertilization – A scientific look into the mechanisms behind implantation brought to you by Khan Academy. Khan Academy provides free medical tutorial videos and I have watched dozens of them! I strongly recommend. <3
• Early Embryogenesis – A scientific look into the mechanisms behind cell cleavage and early embryogenesis brought to you by Khan Academy. Khan Academy provides free medical tutorial videos and I have watched dozens of them! I strongly recommend. <3
• Antral Follicle Video – Dr. Richard Sherbahn, from Advanced Fertility Center of Chicago, reviews the basics on antral follicle counts and ovarian reserve.

TV Spots / Documentaries:

• Vice Series – Vice’s mini-documentary series takes a closer look at the science and progression of gene editing technologies (CRISPR) and preimplantation genetic diagnosis. (Full video available on HBO: Vice Season Four, Episode 1).
• Today Show Couple – This feels somewhat dated, but interesting nonetheless. A full egg retrieval documented live on a morning show? What progress!
• Future Baby – We watched this the night before my first Frozen Embryo Transfer. A very interesting look where the science behind making babies is going. Side note: I’d love to learn more about the business behind egg donation – the glimpse provided here was fascinating! From the film’s synopsis: A film about the future of human reproduction as it happens right before our eyes. This investigation takes us around the world to patients and researchers, to egg donors and surrogate mothers, to laboratories and clinics. The hopes and wishes of future parents mesh with research on how to optimize the human genome in the face of an ever accelerating rate of progress. How far do we want to go? (Available on Hulu and Amazon).

Tools: 

• Freedom Fertility Teach – Tutorial videos for injections.
• Pregnancy Calculator – There’s nothing more maddening than the two-week-wait and we all would like to test for pregnancy as soon as we can. Plug in your cycle information and the algorithm will calculate the best day to take your pregnancy test to get the most accurate results.
• IVF Calculators – Calculate your due date with a 3 or 5 day FET, and more.
• hCG Calculator – See if your hCG levels are rising normally with this handy calculator and graphing chart.

*This is a running list that I update regularly. Have a great resource to share? Leave it in the comments below!