Earlier this fall, Allison Kasirer of FertileGirl and Elizabeth Katkin, author of Conceivability: What I Learned Exploring the Frontiers of Fertility joined us in New York for a fireside chat on fertility. Both women shared so much wisdom, we knew we had to share it with our readers here. We asked Allison to interview Elizabeth, who shared much-needed advice for how to advocate for yourself during the fertility process.
For those who haven’t read the book yet or need a little background, can you give us the “quick-and-dirty” version of your fertility journey so we can all get up to speed on the timeframe, treatments you tried, and the diagnosis you were dealing with?
Well, without wanting to scare people away, it was a fairly long journey. Over the course of nine years, I tried three IUIs (intrauterine insemination), eight fresh IVF cycles (four with ICSI) and two frozen IVF cycles, had seven miscarriages, and eventually turned to a surrogate. Along the way, I was diagnosed with polycystic ovaries and took Clomid, with antiphospholipid syndrome (an immune problem) and took heparin, and with natural killer cells and took both steroids and IVIG. All of this with a funny-shaped uterus, for which there seemed to be no cure. I drank Chinese herbal teas, served as a cushion for an uncountable number of acupuncture needles, and took a variety of homeopathic remedies and tinctures derived from Germany to the Arabian peninsula.
Eventually, my husband and I found our way to having two biological children- a girl and a boy. By the time we completed our family, I had seen ten doctors in six countries. The knowledge I gained along the way convinced me that it should not have taken so long and drove me to write Conceivability.
You have a lot to say on the state of the fertility industry. We’ll get to that a little later. But I know you have an interesting perspective on “unexplained infertility,” or “unexplained recurrent pregnancy loss.” Do you believe this diagnosis? And is our acceptance of it perpetuating some of the concerns about the industry itself?
That’s an interesting question. Yes, I do actually believe that there are some cases of unexplained infertility, but I suspect not nearly as many as the doctors lead us to believe. In many cases, I think they are just not digging deep enough. Fertility is extremely complex. Not only is diagnosing problems very difficult, unfortunately fixing one problem can lead to another. For example, I was diagnosed with ovulatory problems and prescribed Clomid. After many months on Clomid, I eventually ovulated, but my endometrial lining, once quite thick, became thinner and thinner to the point that it could not sustain a pregnancy— a side effect I had not been warned about. Of course, not all problems are the result of treatment as in the case of Clomid, but it takes a very persistent doctor to explore all avenues. Doctors in fertility clinics are not necessarily accustomed to, or compensated for, extensive diagnosis. In many cases, they do a basic work up and move quickly to treatment.
In my case, my fertility hormones-—my FSH, LH, etc.—were all completely normal, tossing me into a category of “unexplained” infertility and recurrent pregnancy loss, which never made sense to me. I was an otherwise healthy woman in my early-mid thirties doing everything “right” and I lost three babies in a row. It seemed to me they should be doing more digging. I think that the bucket of “unexplained” fertility issues may actually contain cases of unexplored anatomical problems, immunology issues, and a host of others. In my experience, and that of many other women I have spoken with, those who keep digging often find answers.
You learned a lot on your journey and it seems like a mission behind the book was sharing this knowledge with others. What are a few headline data points or lessons you wish you knew way back when you first started?
You’re certainly asking all the right questions! First, as silly as this may sound, I wish I knew more about the whole process, and how much the stars need to align to actually become pregnant. Prior to the time we began in earnest to have a baby, I spent most of my adult life trying to avoid being pregnant! I also wish I understood a bit more from the outset about how much of a business the fertility industry is, in order to understand that I really needed to be driving the bus. Of course, fertility doctors want to get patients pregnant, but they tend to take a formulaic approach—Clomid, IUI, IVF—without necessarily looking at the whole body and the bigger picture. Fortunately, more doctors are showing an increasing acceptance of the benefits of complementary or alternative therapies like acupuncture, Traditional Chinese Medicine, yoga and homeopathy, but it has been a long time coming, and they still don’t necessarily suggest it.
But perhaps most importantly, I wish I had understood how much variance there can be between protocols and labs and how important it is to choose a good clinic. IVF is not all the same. I did not know to ask the right questions and to keep asking them until I understood the answers. Protocols vary, for example, by drug dosage and day of transfer, particularly when it comes to embryos vs. blastocysts. Laboratories are differentiated by their ability to do PGD (and different types of PGD), the number of normal embryos produced, the embryo survival rate. I can’t emphasize enough how important it can be to understand why you are on a certain protocol, and whether it has been personalized for you. And to learn about the sophistication, success rates and error rates of the labs. One of the most startling things I learned interviewing couples and researching for the book was how many lab errors and accidents happen, and how much the results differ from lab to lab.
You talk a lot about second opinions and switching clinics, which I personally believe doesn’t happen often enough. Can you talk about your experience with second opinions. Why don’t people seek them out?
I think that there are a few reasons why people don’t seek second opinions. For starters, most women or couples don’t start out knowing they have a fertility problem. They are likely under the care of an ob-gyn, and after trying unsuccessfully to conceive for some time their ob-gyn may refer them to a fertility specialist. Or, perhaps a friend refers them. As one clinic director put it, “think of the care a couple might put into choosing a car or washing machine, yet for something as monumental as where they are going to have their IVF treatment they don’t ask the clinic any questions.” At the outset, most patients don’t realize how complex treatment is, or how much success rates vary, and if they have a poor outcome they don’t necessarily associate it with the doctor or the clinic.
Of course, I think the emotional nature of the situation also comes into play. Almost by definition, fertility patients live in a hopeful space. To spend so much money on treatments that involve sticking yourself with needles on a daily basis requires a hope, if not an absolute belief, that it will work. Part of that optimism entails a faith in the doctor treating you. When faced with failure—at least the first or second time around—many patients want to give that doctor another chance. In many cases that’s actually the right answer, at least at first. It can take a cycle to see how the body responds, so I am not advocating jumping clinics after a failure. But, it is important to try to look critically and realistically at the situation.
Thirdly, it can take a lot of energy to research other clinics and figure out where to go for a second opinion, and the fertility roller coaster can be so draining that people simply don’t have the energy. But I think that eventually, most patients have an “aha” moment where they realize that they have to wake up and take charge of their fertility. At that point, they’re likely to start clinic shopping.
You bring up the really interesting topic of IVF protocols here in the US vs abroad. Can you give us a quick synopsis of some of the main differences? What should a patient know to be able to self advocate throughout their protocol?
That is an excellent question and one of the most important topics in the book. One of the most startling things I learned through my experience seeking treatment in so many countries is that there are actually different—and often conflicting—philosophies regarding IVF.
In the United States, the vast majority of doctors are looking for the proverbial “needle in the haystack.” That is, they are seeking to stimulate the production of as many eggs as possible to find the good ones. In order to harvest so many eggs, they tend to use higher level of follicle stimulating hormone than in many other countries. For some patients, this brings on adverse effects, ranging from ovarian hyperstimulation to poor egg quality.
In many other countries, doctors take what I call the “few good eggs” approach based on the belief that external stimuli, particularly elevated hormone levels at precisely the time an egg is developing, can adversely affect the quality and genetic makeup of the egg. These doctors seek to stimulate the growth of a mere handful of eggs using the least invasive means possible with the aim of producing a few high quality, chromosomally healthy eggs. This approach generally entails lower levels of hormones for a shorter period of time. In my case, the protocol was preceded by a homeopathic detox program along with a vitamin and supplement regime.
This lower dosage/fewer eggs approach is increasingly borne out by research. In fact, studies have shown that cycles with retrievals of more than ten eggs produced lower quality eggs and lower fertility rates.
Another key difference between US and rest of world is the regulatory environment. Unlike most other developed countries where there are regulatory bodies to ensure both efficacy and safety, no one is policing this for women in America, where infertility treatment is more akin to a nose job. There is only one lonely federal law regarding fertility, which requires that clinics inform the CDC of their success rates, and even this law had questionable compliance, making it difficult for patients to evaluate.
Patients should ask detailed questions about why certain protocols are advised, whether the doctor has considered low dosage levels of hormones, and whether genetic testing of embryos is available. I also encourage women to ask about more natural ways to enhance fertility, like acupuncture, Traditional Chinese Medicine, vitamins, and supplements. A doctor’s response to these questions can be very revealing.
Financing of fertility treatments. Any advice for women struggling with this part of the equation?
Yes, fertility treatment, as we all know, is extremely expensive in the United States—I believe it is the most expensive in the world—and approximately 85% of fertility costs here are paid for out of pocket (or through loans, home equity, or credit cards), but there are steps people can take to try to game the system. For example:
Finally, one last question: what’s one thing you wish you could tell women after a disappointing moment in their fertility journey?
Don’t give up! If I can have a baby, most anybody can!