When Genetics and Hormones Lead You Down the Path of Infertility: Taylor’s Battle with Infertility

When Taylor first started thinking about starting a family, infertility had been on her mind as a possible challenge for her and her husband. She remembers having a general conversation with her husband about how she thought they were going to struggle to conceive and she just felt like it was going to be hard for them to get pregnant. Taylor had a cousin who went through infertility a few years before she started her own journey, and while she was aware of some of what her cousin experienced, she didn’t really know the whole picture until she started taking steps on her own journey.

“I had a weird feeling about infertility and what my experience would be, but it didn’t happen the way that I originally thought.”

WHY DID I HAVE TO HAVE THREE MISCARRIAGES?

“My three miscarriages were from February 2019 until December 2019. It was a lot. The first miscarriage was technically a chemical pregnancy. I was on a work trip when I found out I was pregnant and by the time I got home and got an appointment with the doctor I had already started to have a loss. So, it wasn’t considered a clinical pregnancy, but I had 30 positive pregnancy tests.

I wish we had started seeing the reproductive embryologist (RE) sooner. But it’s one of those things where the doctor tells you it’s common and they make you wait. I see both sides. I know that it’s common and statistically it makes sense that not everyone who has a miscarriage needs to see an RE. But at the same time, I knew there was something going on and I’ve learned that you have to advocate for yourself or you will be pushed along the path of least resistance.”

After seeing a RE, Taylor was diagnosed with chromosomal balanced translocation and low anti-mullerian hormone (AMH). In a balanced translocation, a piece of one chromosome breaks off and switches places evenly with another. There is no extra or missing genetic material, which is why they call it a balanced translocation. Nearly every balanced translocation is unique and because there is so much genetic material involved in our chromosomes, even a person with the same two chromosomes affected can have different outcomes. A low AMH is often associated with decreased ovarian reserve (i.e. eggs).

I HAVE MY DIAGNOSIS. WHAT’S THE PLAN?

“My experience is a doctor sitting down and presenting what they think is the best plan. With IVF you talk to a financial counselor and different people and there was definitely a protocol to follow. However, I try to voice my concerns more despite following specific protocols. During my last round, I had terrible results and I had to have an hour-long pump-up session with my therapist who reminded me that this is a business, my doctor is not a magician, but I am a consumer and not happy with the product. I need answers...If someone had told me to expect 1 or 2 embryos each time, it would have been different but that’s not the impression I was under. They told me that they were making all these changes between the different rounds and they felt a lot better about my chances. No. I don’t want to know all that. Just be honest. I’m not going to do this forever so what can I expect?”

“You have to advocate for yourself or you will be pushed along the path of least resistance.”

IVF (AKA: THE EMOTIONAL ROLLER COASTER)

“Physically, it was easier than I expected, and I don’t want to downplay that because I know it’s not the same for everyone. I had some headaches and that was it. But, the emotional part is probably worse than I could have ever expected even after meeting with a therapist and talking to a lot of people on Instagram who have gone through it. Everyone calls it a roller coaster and it is truly such a roller coaster.”

 For my first retrieval, I didn’t really know what to expect going into it. I had 8 eggs and it didn’t sound high, but I also knew it was kind of like a science experiment. Then we ended up with two blastocysts and I was like, 2 out of 8 that is pretty good, and I felt ok with that. I felt ok with that for the first time thinking that we are going to make all these changes and next time it was going to be way better, and we were going to get more.

 For my second retrieval we got 14 eggs and I was on cloud nine for 24 hours and I was so excited that we got almost double the eggs. It was amazing! The doctor told me that they didn’t think we were going to get that many but in 24 hours we went from 14 eggs to 6 eggs. It was horrible. I canceled all my meetings. I ate mac and cheese and watched reality TV. I have never had something rock me that much. Then the bad news just kept coming and from 6 eggs, we went down to 1 egg. The higher the high the lower the low.”

COMING BACK FROM A LOW POINT ON THE EMOTIONAL ROLLER COASTER

“What helps me come back up? Time. I do a lot of support groups. I have my therapist and I try to be gracious with myself.

 I allow myself to be sad. I’m a positive person but I don’t try to put a silver lining on everything. I think people struggle with that and think that everything should have a silver lining. Once I accepted that, it helped me a lot. We had bad results and it sucks. I allow myself to feel that.

 I give myself space to acknowledge when I’m sad. It’s helped a lot.”

“I allow myself to be sad. I’m a positive person but I don’t try to put a silver lining on everything…We had bad results and it sucks. I allow myself to feel that.”

DOCTOR vs BUSINESS

“It’s a business and I know that. My dad was a doctor and I understand how it works. My doctor is warm and brilliant. But she is busy and she’s busy because she’s a good doctor. I know my doctor has a life and a family, but I definitely feel like I am a number. There have been a few times where I second guessed something, and they realized their mistake and I think to myself, ‘what if I had not have asked’. And this is at one of the better clinics in the city.

 I don’t talk much to my clinic. I see my doctor for follow-up and the intro but other than that I see the phlebotomist in the lab and the ultrasound techs and that’s about it. They didn’t walk me through the medications or even how to administer them. I used to be in health care and my husband is a Type I diabetic so thank god we know how to work a syringe. But what about someone who is scared of needles? There are videos but it’s not the same as actually doing it. That I thought was surprising.

 A lot of things are communicated through a portal and they don’t give a lot of context. When I was halfway through my stimulation cycle, I left an ultrasound appointment and my husband asked how it went and I told him I didn’t know...Why don’t I just ask? They uploaded my hormone levels to the portal, but I didn’t know about the follicles and I had no idea if it was working. It could be a week of heavy injections and I would have no idea if it was working. I realized I had to ask for that information because they won’t just give it to you. Now when I leave the ultrasound appointment they print out a report for me but that was after I requested it. I then have to ask my doctor to walk through the report and tell me what we are hoping to see and what different things mean. I was surprised how they let you go through it blindly.”

FINANCIAL BURDEN OF IVF

“Even with good coverage it’s still anywhere from $3,000 - $8,000 USD a round depending on the testing involved. Luckily for us, when my doctor recommended IVF and we knew we had the coverage, it was a no brainer. It’s been helpful for our relationship. If we had to pay $40,000 USD for each round, there would be arguments and disagreements. But even though we are more fortunate than most, we still can’t be paying $7,000 USD a month for 10 months. At some point we will have to start dialing back or looking for somewhere more affordable.

 Also, it’s common that with my condition, people use egg donation just because the odds are so low with your own egg supply. But egg donation is not something that we are considering or can really consider because of the financial aspect. It’s not something that is covered by our health insurance. I have a friend with my condition and she just paid $50,000 USD for donor eggs and that’s not something that we want to do. That will have an impact down the road.”

“You don’t get what you don’t ask for…your doctor is the brains of the operation, but you can still drive.”

FOR THOSE WOMEN WALKING THE INFERTILITY PATH:

“Something that I have learned is that you don’t get what you don’t ask for. For example, for pricing, tests, and medications at a clinic, nothing is set in stone. You can ask for price breaks and discounts and things like that and a lot of times you will get them because they want your business. It’s price shopping and it feels uncomfortable. I would put off calling a pharmacy all day long to ask them about the pricing of a medication because it felt weird. But in the end, it could save us $400 USD and that was worth it.

 Same with test results or protocols. During one cycle I felt like I should be starting a medication and I wasn’t. They said at the clinic it wasn’t noted in my chart to start it, but I asked them to check again because I had done it the last three times and there was no reason I wouldn’t do it this time.

 You have to be in the driver seat of this process. Your doctor is the brains of the operation, but you can still drive, and you can suggest other types of protocols or ask why you aren’t changing protocols.

 Same thing with test results. A lot of times they aren’t going to tell you context or what something means. You have to ask and it’s like pulling teeth. But if you want information you can get the information.”

Since our interview, Taylor’s infertility journey led her to being pregnant with twins and welcoming her two little girls into the world Fall 2021. You can continue to follow Taylor and her continued advocacy and support of those battling infertility on Instagram @infertileandimpatient .