Been Through It/Going Through It: IVF
You know the expression, a trouble shared is a trouble halved? That’s the idea behind our new series Been Through It/Going Through It. We’ll be taking a look at some of life’s most challenging events like infertility, divorce and grief, from two perspectives—someone who has been through it and someone who is currently going through it. And while there’s no expectation that offering up these perspectives will divide the burden; we hope that it will provide some support and empowerment to other women who may be dealing with the same thing. Our first topic: IVF.
Dejha lives in Raleigh, North Carolina and is about to start her second IVF cycle. She and her partner have been trying for seven years and did one IVF cycle during the pandemic that ended in miscarriage. Dr. Roohi is a fertility doctor and patient who lives in Chicago, Illinois. She conceived her two children via IVF.
On how much they knew about IVF beforehandDejha: Nothing! When I heard that the next step is IVF, I was like...Is there a class or something I can sign up for? Dr Google is going to help me? The only thing that really helped me learn more was friends who had been through it already. I was able to talk to them about it and they would say, ‘Hey, ask this question, do this or don’t do that.’ But it was very, very new to me. And it was a very scary learning experience.
Roohi: You know, I have a 7-year-old and 5-year-old. And when I started IVF, I was an OB resident and you would think we know a lot, but you get two months out of your four years that you do your OB/GYN residency in fertility. So, believe it or not, I used Dr. Google a lot, just like Dejha. It was really embarrassing because my husband who is not in medicine would constantly ask me, like, ‘How are you a doctor? Are you sure you’re really a doctor?’
Dejha: Google can help but until you get those needles and medicines into your house and you’re ready to take those shots...it’s a totally different experience. You have to mix up your own laboratory! You’re basically a scientist. I watched YouTube like five million times that first night.
Roohi: For me, the internet created a lot more confusion than answers. My son was born in 2013 and we tried for three years beforehand. So, there wasn’t a lot of social media, at least not like there is now. I would go on these blogs and I would write down notes and abbreviations. What is TTC? What is B? And it was horrible and embarrassing. I would keep Googling and I was even more scared.
On what infertility looks likeDejha: When anyone Googles infertility, you typically see a middle-aged white woman. And so I was like, I don't have this problem. I don't see anyone like me.
Roohi: It was embarrassing, because like Dejha said, you don't really see young people. We don’t see people of color. And this is truly what infertility looks like. It doesn’t discriminate. It affects everybody.
On what it felt like when the doctor suggested IVF
Dejha: Typically, when people hear infertility, everybody thinks IVF is the only option. It’s not. Infertility is a journey. I’d already done things pre-IVF, like Clomid and Letrozole, and all that stuff. And so when I heard IVF, I was like, Oh, crap this is real. That’s how I think I knew. Even though we’ve been trying for years, I knew at that point it was serious. And then I started thinking about the cost. Once you do that, you have to make a lot of life decisions. Like, what do we do in order to afford this? And then I started thinking about how to explain to my family what we’re going through. How do I explain to my employer? How do I explain to myself and to understand what my body's about to go through?
Roohi: I don’t think I took it well, because embarrassingly I probably switched like five clinics. I would go and do the standard Letrozole, Clomid, IUI and it would fail multiple times. And they’d say, ‘It's OK you need IVF.’ And I’d say, ‘OK, I need my records because I'm going to another clinic.’ And I would try that all over again because Dejha’s right, it becomes so real and then you’re like, oh my god, I can’t get pregnant. I have PCOS so I knew I needed help. And when you Google PCOS or when you talk to your OB/GYN or anybody, it’s like, ‘Yes, you need a pill and then you’re going to ovulate and then you’re going to get pregnant.’ And I was like, it’s going to happen, they said it was going to happen so I’m just going to keep trying until it does. So, any time anyone said IVF, I would do everything but IVF because I felt like I was failing and I was like, why isn’t this happening when you said it's going to happen?
Dejha: I have PCOS as well, and it’s just like you said. Like ‘OK, take a pill and you’ll get pregnant within six months to a year.’ And it’s like…nothing is happening. So, I was like, no, let's try something else. I would Google stuff and go to my doctor and ask, ‘Can you try this first?’ They were tired of me. They were like, in our best clinical advice, we think IVF is best. And I was like, ‘But we got to try this, we got to try this!’ And like you said, it comes to a point where if you want to get pregnant, you have to follow the best advice of your doctor.
On the role of partnersRoohi: During the whole journey, my husband was like, ‘Oh, you’re the expert. You tell me whatever you think. We just want to have a baby.’ So, he was always there, but then he kind of left it up to me to steer the ship and I was a bad leader, because I just kept going in circles! I didn’t want to do IVF. So, every time I came to that point, I just turned around. He was a good sport about it because to him, he was like, ‘OK, I'll be wherever you need me to be. Just tell me what day.’ But he didn’t really ask much.
Dejha: I agree! It’s almost been like, ‘You know what’s best, and you understand more because you’re so engulfed in it all. You know all the questions to ask because you’re Googling it constantly, you’re going to Facebook groups and support groups.’ So, it's kind of that trust of whatever you think is best, I'll just follow your lead. But it’s like the blind leading the blind! We’re just trying to figure it out. There’s no IVF manual floating around.
On what not to say to someone doing IVF…Dejha: The biggest thing for me not to say is ‘Relax, it will just happen.’ I’ve been relaxing for over six years, OK? Or here’s another one: ‘Some people have to make the choice of choosing to live childfree.’ It’s like they’re saying, ‘Hey, we’re going to dismiss you wanting to have a biological child.’ Or they expect you just to adopt and I tell people, ‘First of all, adoption costs more than IVF!’
Dejha: People don’t realize that, they think it’s free or something! Or when people say, ‘Have you tried this diet? Or have you tried this pill?’ I’m like, ‘Um, yeah!’
Roohi: Infertility is like a loss of something that’s so innate to you because as a little girl, you think, I’m going to grow up, I’m going to get married and I’m going to have a baby. And not being able to fulfill that is like a loss. And it’s this loss that you can’t control. So, imagine it as this loss and then think how you would respond to that. Because believe me, like Dejha said, if there was a solution then we would have done it by now.
…And what to say or do instead
Dejha: Just being there and listening, and eventually asking questions. And not just questions because you’re nosy but asking questions because you actually want to be helpful. Honestly, just listening and having that awkward silence. It’s OK. Sometimes it’s better to say nothing at all and just be there because you know, people don’t forget what you say. I always use the toothpaste analogy—you can’t squirt out toothpaste and then put it back in, right? When you say something, you can’t put it back in. So be very careful with your words.
Roohi: Yeah, I think it’s important to know that sometimes silence is OK. It’s uncomfortable, but it’s OK. It is an uncomfortable topic. I used to get really annoyed, and it took me a long time to be like, OK, it’s coming from a good place but it’s hurtful. And when you’re on these hormones or when you’re in treatment and cycle, you’re super sensitive! And so, I always say if you don’t know what to say then it’s OK not to say anything. Or get something like a small pair of socks and say, ‘I know it's a rough time, here some socks to keep you cozy.’ Just a simple, ‘I’m sorry and I’m here.’
Dejha: Exactly, I totally agree. I believe in living in that awkward silence sometimes.
On the biggest misconceptions about IVF
Dejha: I thought it was something that just wealthy, middle-class white women did. But if you look at the statistics, that’s not the case. That’s what really drove me to become an advocate. I found out that Black women are twice as likely to have to go through this, but we’re least likely to actually seek treatment.
Roohi: One of the biggest fears of people not seeking help, especially people of color, is because they’re ashamed. A lot of people think that if they see a fertility doctor and they have to do IVF then everyone will know because they’ll have twins. Especially with Brown people, that’s a big thing! First of all, IVF does not give you twins and second, you don't have to tell anybody. I didn't tell anybody. And the reason I'm kind of like Dejha, why I now speak about this, is because I felt like a lot of people didn’t seek help because they were ashamed. And by not talking about my journey and how hard it is, it’s perpetuating that cycle.
Dejha: And then knowing that IVF isn’t your only option. A lot of people think they have to go to a reproductive endocrinologist and do IVF but that’s not always the case. And that it’s cheap too...you can just do it right? No.
Roohi: Yeah, I think for me the biggest misconception is how much people think it will take away or you can’t do it because it will take too much time. Those are the excuses I made for myself too. But it goes by very fast. It’s like 10 to 12 days of stimulation, which is injections.
On what it’s like to do IVF, both physically and emotionallyRoohi: It's a roller coaster. You’re going to have good days and you’re going to have bad days—or both in the same day! You can be really happy and then you’re going to find yourself crying two hours later, and it’s just the fluctuation in your hormones. Physically, I don’t think you feel as much. You take shots, but they look much scarier than they actually feel. I think if you’re a physically active person, then yes, there are limitations. Like you can’t have sex. So that’s really hard for a couple, especially if they’re going through back-to-back cycles. You can work out, but very moderate. So now not only am I going to make you hormonal, but also restrict your activity and tell you not to have sex! It’s a lot to process. I always say don’t do it when you have a big month at work or anything like that, because it’s not going to be good.
Dejha: Yeah, I agree. What I did is I created TikToks to kind of help me go through this journey. I recorded my injections and I put on some background music and it really helped me. So I looked forward to recording every night and I have my friend on Facetime who hypes me up. Because when you get that big box of medicine, it is very scary.
Roohi: It’s definitely overwhelming when you get this box of medication. Like Dejha said, it was like a laboratory! I panicked and called my nurses like ‘oh my god, I don't know what to do!’ I’m a doctor and I was panicking. They send you like a container with like 6000 salines and monitors and gauges and units. It’s overwhelming. So, I always tell my patients, ‘Don't do it when you're unsettled or when you're not ready to do it because mentally you have to be ready.’ It definitely takes a toll emotionally and physically.
Dejha: But once you do it, it’s fine. It’s easy. I would just say that for me, it has had some physical side effects like weight gain, bloating and fatigue. Everybody’s different of course.
Roohi: Oh, I’d forgotten about that.
On what advice they have for other womenDejha: Be kind to yourself, be patient. It’s really hard but be patient. Ask a lot of questions. And don’t go on this journey alone. Maybe your family doesn’t understand, maybe your spouse doesn’t understand, but find someone who does understand. You’re not the only one who has gone through IVF, so reach out. Also, before you start taking your meds, print them off and organize! And really take the time to look at what you’re going to be doing and not wait until the day of when you’re supposed to take these shots. It’s going to be overwhelming and you’re going to get frustrated, and you’re going to miss your trigger shots and mess up your cycle.
Roohi: It’s really scary, but IVF brings a lot of hope. It felt like it was so scary and intimidating to start. But it finally felt like it was going to take me to where I wanted to be. Yes, it’s intimidating and scary, but hopefully it will accomplish what you desire. It’s a roller coaster. But don’t get scared and don’t get off. Like Dejha said, just have a plan and then keep going.
Dejha: Yeah, I think you bring up a really good point. It’s a roller coaster. Highs and lows but don’t get off. I’ll be doing my second IVF cycle, without a child. So even if it might not work for you the first time, you know, don’t give up. Really keep hope and be kind to yourself.
If you or anyone you know is experiencing infertility or going through any of the treatments mentioned above, here are some useful and supportive websites:
- RESOLVE: The National Infertility Association
- INCIID, The International Council on Infertility Information Dissemination, Inc.
- Fertility for Colored Girls
- Tinina Q. Cade Foundation (TQCF)
- Pregnantish: This Is What Infertility Looks Like