SART Fertility Experts - Ovarian Insufficiency at 25: Finding Hope Through Donor Eggs

At just 25 years old, Emily Patel received a diagnosis that changed the future she had always imagined: premature ovarian insufficiency (POI). In this powerful episode of the SART Fertility Podcast, Emily shares the emotional realities of an unexpected infertility diagnosis, a heartbreaking adoption experience, and the path that ultimately led her to donor egg IVF and motherhood. Now the mother of two daughters and founder of Hopeful Mama, Emily reflects on donor conception, genetics, bonding, relationships, and the importance of finding support after a life-changing fertility diagnosis. She also explains why greater awareness of POI symptoms in teens and young women matters and what she wishes every newly diagnosed patient could hear. Her story offers an encouraging look at the many ways families can be built and how advances in reproductive medicine can create new possibilities for people facing infertility, ovarian insufficiency, and unexpected changes to their family-building plans.

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Welcome to the SART Fertility Podcast. Today I'm excited to talk to Emily Patel. Our topic is ovarian insufficiency and we're lucky enough to have Emily tell her story about her diagnosis and then her journey to family building.

Welcome, Emily. Hi, thank you so much for having me today. Yes, so Emily, just for a little bit of background, Emily Patel is the founder of Hopeful Mama and she's a nationally recognized advocate for women navigating infertility.

Her journey began at age 25 when she was diagnosed with premature ovarian insufficiency. This is a diagnosis that reshaped everything she thought her future would hold. Through donor egg IVF and the advances of modern medicine, Emily is now a proud mama of two daughters, Penelope and Everly.

So Emily founded Hopeful Mama to create a legacy for her daughters rooted in compassion, advocacy, and courage. What began as a personal journey has now grown into a mission to support and educate women who are searching for answers, resources, and hope. Through financial assistance programs, educational workshops, and community support, Emily's work has raised awareness for the full spectrum of fertility options available today and to ensure that no woman feels alone in her journey.

I love this. This is such hope for people. Thank you.

Sometimes I don't hear it read often after I've written it, so I get a little teary-eyed sometimes when I hear it because I wrote it a while ago, but it still rings so true. All of those things are just so deeply a part of my life and the mission of Hopeful Mama, so thank you for sharing that with everyone. And I love talking to people like you that have gone through these experiences and actually flourished with them.

And also just on the medical aspect, just that there are medical advances that you can have a beautiful family, and I'm blessed to be a part of that. Yes, it is so true. Me too.

So just a little bit for our readers. So premature ovarian sufficiency, this is a clinical condition characterized by the loss of ovarian function when you find out, my gosh, I may not be able to have my own genetically linked child. Initially, women may notice irregular periods, but then you have to get blood work to confirm the diagnosis where there's a blood test follicle stimulating hormone, which is a marker of egg reserve.

And if it's more than 25, that's typically the diagnosis. And it's quite common. I mean, the incidence is up to 3% of women and the causes can be multifactorial.

It can be surgery where you've had your ovaries removed. It could be chemotherapy where the ovarian function no longer exists. It could be chromosomal abnormalities, autoimmune issues, and often reasons that often they just haven't found the reason for it.

The implications can be both physical and emotional. And I think that Emily is here and she tells her story quite well. So we're very happy to have her be very genuine and let us know about her diagnosis and what she did after this.

So I guess, Emily, can you take us back to the moment when you were first diagnosed and what you remember most about that day? Sure. That day came after I needed to have a heart procedure done a few weeks prior and I needed to come off all of the medication that I was taking for that. And so after that was completed and I still hadn't restarted my medication, I was just feeling not like myself.

I felt very odd. I was having headaches. I was feeling hot during the day.

I was so sweaty at nighttime. I had a lot of dryness and I just felt bad. And so I finally went to the doctor and I had seen her for quite a while now.

And I went in and I'm a nurse. And so I was chatting with the nurse and then the doctor came in and she was kind of like, Are you here? What's going on? And because I knew her so well, I jokingly, you know, kind of off the cuff said, Well, I'm here because I feel like I'm in menopause. And then I started laughing.

And we both kind of chuckled. And I'll never forget that, that pure, almost innocence and ignorance of what was to come. Because we both joked that, well, there's no way you're in menopause, you're 25 years old.

And so you know, she left the room, we had some labs drawn, and I'll never forget her coming back. And the look on her face was just one of just pure sadness and not sure how to deliver news to me. And she said, Emily, I'm really sorry to tell you this, but I think you're actually right.

I think you're in menopause. And I didn't even know what to say to her at the time, because I again, was just joking. You know, that was the easiest way to say how I was feeling.

But I never thought that it was actually the case. And so she ended up referring me on to the University of Iowa where I needed to have more blood work and diagnostic studies done to confirm that. But that day, I remember leaving the the clinic and just thinking to myself, How on earth did I miss this? Where did this come from? And how does it just show up out of nowhere? And that's really the main the main things I remember from that day of feeling confused and just so out of sorts about how could I have missed this? Yeah, I can completely understand that.

I mean, at age 25, that is not anything that you would think about. In fact, when you're young, you know, you take your health for granted. You never think about these things.

And I know that people get devastating diagnosis every day. And it's hard because some diagnoses are life threatening. And this it wasn't life threatening, but it really, it's like, wow, it really sinks in.

And you have to think about this. It's, it's the type of diagnosis that affects you, you're the rest of your life. So before the diagnosis, how did you imagine your future family, if at all, you know? Yeah, definitely.

I mean, growing up, there was two things I always knew that I wanted to be a nurse and that I wanted to be a mom. And so that was just something that was kind of just in my childhood as I was growing up. And then early on in my 20s, I got married fairly young.

And so we wanted to travel. And you know, we wanted to do the things that 20 year olds like to do with, you know, not having a lot of responsibility and you know, getting to, you know, go on a trip whenever we wanted to. And so I didn't envision specifically when I would have children, I just assumed when I was ready, I would just, you know, stop taking the birth control.

And then I would get pregnant. Because that's what I was always taught. I was taught, you know, if you have sex, you're gonna get pregnant.

So if you don't want to get pregnant, you need to take birth control. And so, you know, I envisioned a family, you know, maybe two to five kids at some point, you know, at what age I never really had, like, you know, by this age, I want to have so many children, but I knew I wanted to be a mom. And I knew I wanted to be a mom of multiple children at some point.

And so up until that point at 25, we didn't have really any plans of growing our family at the time. But I will tell you the minute that I received that diagnosis, it was like a switch went off and I needed a child right then. And it's so funny how that happened, because it wasn't on my radar until it was taken away.

And then it was, well, now what am I going to do? I want to have a child and I can't. Yeah, that's very common. And so then luckily, there is the option of the donor egg to have build family, there are, you know, medical modern miracles.

And what was that process like deciding that, you know, did you want to do that? And then what was that process like? So that process didn't come for many years after my diagnosis, something that I think gets missed a lot when people think about infertility and how it's impactful to people is the relationship side of things. And so shortly after my diagnosis, my husband and I at the time were approached for a private adoption that we went forward with. And by all intents and purposes, assumed that we would be the parents of a little boy that was being born in about two months.

And unfortunately, that that ended up not going through. And so after three days, birth mom changed her mind. And so that impacted my marriage dramatically, we both realized that kind of what our views were of getting to parenthood were different.

And after that, my desire to be a mom was stronger than it ever had after I had held that little boy thinking that I was his mom and believing I was his mom, and then having to give him back was something that I'll never forget. But also, it really put a fire inside of me that I would do whatever it took to become a mother. And so shortly after that, and my husband and I at the time we separated, and I found myself about 27 years old.

And I was divorced, and I couldn't have kids for what I thought at the time. And that was such a hard place to be at. And it wasn't until I met my, my husband Samir, that I even learned about donor eggs.

I even being a nurse, I wasn't in the reproductive side, I was in emergency nursing. And so I didn't know much about infertility. I didn't do a lot of research into it.

And so once I met Samir, and we were looking at my medical records and talking about building a family that he said, Well, Emily, your uterus is just fine. And I said, Well, what is a uterus? I don't have any eggs. He goes, Well, you can just use donor eggs.

And I said, Well, what are donor eggs? I had never even heard of donor eggs. So it was Samir who actually shared it with me. He is physician.

And so I started deep diving into like, what is this? How does this process work? And honestly, for me, because of the way my story had gone, it was the beacon of hope that I truly was looking for that I didn't know that I was looking for, because I never thought I would be able to be a mom by carrying my child. And so the option of donor eggs gave me that and it was truly the hope that I had been looking for. Yeah, when you have hope, there's always something to look forward to.

And I think that the donor egg and donor embryo options are just great ways for family building. And they are so hopeful. Like if you pursue these, for the most part, you know, you are high success rate to get a big family.

What's something that people assume about premature ovarian insufficiency that's just wrong? Ooh, I would say that it happens when you're older, like in your 20s. But my experience, what I learned was I actually had started premature ovarian insufficiency, probably when I was 16 years old. And so a lot of people don't realize that POI can start as early as teenagers.

And so we went back and looked through my medical records and found that I had gone to the doctor around the age of 16, complaining of night sweats and hot flashes, and headaches, and nothing was really done about it at that time. Again, that was now almost 30 years ago. And so they just assumed that I was a hormonal teenager, and they put me on birth control.

And that was all, that's all that was done. There was no further testing, checking, nothing. And so I think the understanding that it only happens to people who are in their 20s, or that it can't happen in your teen teenage years is something that I like to bring light to, because it is important for women to understand their body, especially, you know, moms of their girls, or even teenage girls to understand how their body works and functions so that if something is off, they do push a little bit harder for further testing.

Yeah, I've had many patients where they've been on the birth control pill. And they said, well, I started it, you know, when I was 16, for regular periods. Now that I'm 30 to 35, I stopped the birth control pill, I haven't gotten my period.

Some are having hot flashes, some are, we do the testing, they have elevated levels. And so, of course, no one ever expects this. And then, just to think about that it could have been masked for 10 years.

It's true, like people sometimes are born, you know, with very few eggs and, and have it from birth, but it runs a full gamut, we'll have people in their teens, 20s, 30s, you know, up to age about 40. And, you know, after age 40, then the diagnosis change, it's premature menopause, not premature insufficiency. But it can happen in any decade.

So it's good. So people know, you know, listen to your intuition, if you're having symptoms that even don't seem to make sense, then it's worthy to get, you know, see, see a practitioner get a blood draw. What was harder than you expected? And what surprised you by being easier? Related to donor eggs specifically? Yeah, and just about the whole diagnosis or donor egg or just family building? Yeah, I think what I'm going to answer the second part first, I think the thing that's been the easiest is being a mother to donor conceived children.

I think initially, when you think about going down the donor conception path, there are a lot of fears related to bonding to how are my children going to feel about this? How are other people going to feel about this? Am I going to feel connected to my baby? You know, they're not going to look like me, how do I feel about all of that. And that has been the most rewarding and surprising thing that the lack of genetics that I share with my daughters is the least impactful part of my motherhood journey. And that was a surprise, because I thought it would probably be more impactful than it was.

And honestly, it it really doesn't play into day to day at all. And I have an eight and almost six year old. And even in all of those years, the fact that we don't share DNA has never been a roadblock for us, which is really, really phenomenal.

I think the hardest thing that it has been related to my diagnosis is, and also just donor and family building, I think it's just the lack of awareness that there is not only within my family and my friend circle at the time, but also just socially. You know, when I was diagnosed at the age of 25, no one was really talking about infertility like they are now. And no one was talking about premature ovarian insufficiency.

I mean, when I was diagnosed, it was called premature ovarian failure. And so we've even come a long way since then to, you know, understanding it's a sliding scale, and you can still get pregnant potentially with your own eggs if you have, you know, a lower side of the POI. And so there was just so much has changed since I was diagnosed.

And so initially it was hard to navigate, you know, not understanding much about, you know, POI and my family not understanding it and socially not really accepted. You know, infertility was still very much something you didn't talk about. Donor conception was definitely something you didn't talk about.

And so navigating that and speaking up and spreading awareness about it, I think has been probably one of the most challenging things. Right. And infertility is quite common, like one in eight couples suffer from it.

And so this is something that there shouldn't be a stigma and there should be talked about. So how did your partner experience the journey and how did you support each other differently? I was pleasantly surprised to see that he was the one that actually knew about your options. Yes.

Well, and it is funny since he is not a reproductive physician, he's an emergency medicine doctor. So the fact that he even really knew about it is really interesting to me as well. But obviously in that situation, you know, he was very supportive.

He is the one that that shared it with me. He was very open to going down that path, knowing that I obviously could not carry genetically related children on my own. And so the fact that I could go into something completely new and something that I knew nothing about and have a partner who was so supportive, so open.

And even when we were selecting our donor, you know, I was wanting him to kind of help look at the different profiles. And, you know, he said at the end of the day, I want you to feel comfortable because you're basically the one who has to replace something that you don't have. And so regardless of what I think, it's really 100 percent like, what do you feel the most comfortable with? And so just having the autonomy to be able to make those decisions and feel supported in that was something that I definitely don't take for granted.

And I know that a lot of couples really do struggle with going to the donor conception path and moving down, like, how do you select a donor and, you know, how that can impact a relationship. But for me, I definitely feel blessed that Samir was as supportive as he was. Oh, yeah.

It's always so nice to have choice and hope and then to have a lifetime partner that you're in this together and that you're so excited about what's to come is, you know, that makes such a big difference. So how do you think about genetics now that you're a parent? Well, as I mentioned a little bit before, I find genetics to be very important, specifically related to our donor and how the gift that she gave to my well, I should say both of our donors, because we actually have two separate donors for each of our girls. The gifts that they gave specifically to us is so impactful to our children.

And it's so important that our children understand that who they are, and why they're here is because of them as well. And so I don't take that for granted. And it's something that we always try to include the fact that we have, we call them helpers, but our donors into important conversations like, Oh, why do I look like this? Mommy, because you don't have this.

And you know, we remind them that it's because of their donor. But specifically from a genetic standpoint, for me looking at how I view genetics, now that I'm a mother, as I mentioned, you know, the genetic piece or the loss of genetics for me has been truly the least impactful in my motherhood journey. And I think that that is something that I look at genetics now and realize that it doesn't take shared genetics to to mother a child.

And I think I learned that a lot through the adoption that I went through, because when I that boy who I did not carry in my belly, I had absolutely no genetic relation to him, I believed and felt that I was his mother. And that truly set my heart and my being up for learning about donor eggs, because I knew in that moment that I could feel that much love for a tiny human that I planned on parenting, how easy it was to also feel that connected to the route of donor conception and being able to carry my child as well. And so I have found that, you know, genetics is, again, it is important to make sure our girls don't forget that, but you definitely don't need it to to have a loving family.

Yeah, 100% agree on that. I love hearing these stories. So what, what would you want someone newly diagnosed with premature ovarian insufficiency to hear? Oh, I remember when I walked out of the university that day, and the doctor said, you know, you have premature ovarian failures, what he said at the time, and you're not going to be able to have children of your own.

And that was what I walked out of that clinic with that day. And I can't tell you how alone and sad I felt, just how devastated. And so for someone who's newly diagnosed with POI, I would want you to know that there, there are other options for family building.

And as much as this diagnosis feels completely life changing, and it is that there is hope, and there are alternative options to parenthood. And there's also a community through Hopeful Mama that can support them and walk this journey so that they don't have to walk it alone. Well, I'm so thankful that you're here to tell your story and to help so many people because, you know, like we were talking about for infertility was very common, one in eight couples suffer from it.

And then up to 3% of women have premature ovarian insufficiency. So this is, you know, this is quite common. And it's, I think it's a good thing to talk about and just to know that there are ways for family building.

And I'm so just appreciative that you would tell your story and let people know that there are options for them. Yes, thank you so much for having me. Well, thank you, Emily.

So this concludes our podcast on ovarian insufficiency and future family building. Thank you until next time. The information and opinions expressed in this podcast do not necessarily reflect those of ASRM and its affiliates.

These are provided as a source of general information and are not a substitute for consultation with a physician.