16th Annual Patient Day
Your Mother Should Know, Your Doctor Should Know Better!
Patient Day - March 2, 2025
Einhorn Auditorium
Lenox Hill Hospital, New York City
Scientific Director
Dan Martin, MD
Program Director
Tamer Seckin, MD
One of the things I knew in my practice was that, remember, my practice was not specifically endometriosis. It had more to do with pain and infertility In an infertility practice, you see women who do not have pain with their endometriosis, a few of 'em may don't even have PMS. They're those women who don't know that their periods are even going to start. They get surprised. So infertility is a different thing than most of you have in this practice, and we'll see if our panelists will share some of that. Can you share a little bit about, so let's start with Alexandria. Can you share a little bit about your journey with endometriosis and how impacted your path to parenthood?
You're down an ovary at this point, and they also said that when they went in, my bowel was completely tethered to the back of my uterus, but because they weren't prepared to go in and do that, they had to leave all of that. So I didn't have any excision of any of my endo at that time. So it was pretty overwhelming. I was in university at the time, single, obviously wanted to have children always, but was not thinking about that. So then it kind of started the road of me thinking about freezing eggs and going down IVF and kind of trying to take control of it. At that time I did a lot of research into IVF and got in at a clinic, but I just didn't feel emotionally ready to make some of those decisions. I was a little bit too young. I didn't know the answers about what I'd want to do if I didn't use my eggs, if I didn't end up making embryos with them.
And so I felt that it wasn't the right time for me to do it and I was kind of taking the risk knowing that with one ovary and endometriosis, I might be running the risk of not being able to have biological kids, but it didn't feel right at that time. So fast forward to 2022, I felt more pain on my left side, had an MRI and there was a cyst on my ovary. Again, at this point, I'd just been managing all my other endo symptoms, so trying through diet, through exercise to manage all of the GI and bowel symptoms. And when the cyst came up on the left side, I was like, okay, we need to kind of tackle this before it gets too far. And as a lot of the other panelists had said in Canada, I was referred to a specialist, but the weight for me, so this was September, 2022, my consultation appointment was April, 2023.
So I knew at that point I would end up in the ER again and probably end up losing my overage just because I wouldn't have a specialist doing my surgery. So that's when I reached out to Dr. Kin and my surgery was actually two years ago today. So I reached out to him in dire need. I called his front desk and kind of bombarded them. They're like, oh, okay, we'll need to get some tests. And I'm like, I have everything, I'll send it right away. And he got me in within two weeks. And then I had surgery within a month of seeing him. And at that point I was with a partner. We were living together and Dr. Kin and Dr. Chu were pretty upfront with me just saying, you have one ovary, you have stage four deep infiltrating. He had to do complete reconstruction of my pelvis, take this off my ovary.
If you want to try to have kids, it's within six to nine months. Is your window of your uterus and everything looking the best? If not, you might have to go down the IVF route. So at that point, we were ready. We knew we wanted kids, so we were okay to go ahead and start trying. And we were really, really blessed. It only took us about three months of trying after my surgery to be able to get pregnant. So I think it's hard for some people if you're not at a point, you're able to do that and start trying. But we were ready, so we were able to. So I have a one-year-old at home and I'm pregnant with my second baby.
So it was a long history of having these surgeries and I'm a single mom by choice up there in age, and I knew that endometriosis would affect my infertility. So I wanted to try to have a baby. So I started at the age of 39 and tried the traditional I UIs. I had all the testing. My A MH was pretty low at that point. So with my reproductive endocrinologist at the time it was actually Dr. Singer, which I love him so much. We decided to have tried four cycles of medicated I UIs and if it did not work, actually my next step for me was donor egg or donor embryo. Just because I knew that my A MH was low, my age of probability of actually me producing a healthy egg on my own would be very slim. And at that point I just wanted to be a mother.
I didn't care the route of what it was. So that's what I had decided after those cycles that were not successful. And I did the whole donor egg process and had three beautiful embryos and then had three transfers that were not successful, two chemical pregnancies. I had a chemical pregnancy with my IUI and then one failed pregnancy and totally devastated, but I just kind of felt like something was wrong with my immune system. I just, I couldn't implant, but they weren't fully implanting. My intuition said it was. So I had sought just some reproductive ologist. It had some testing done and basically was my body was attacking these embryos, so I just kind of found a specialist. They put me on an immune protocol and my fifth embryo transfer worked. So I now have a 20 month old little girl named Amari Grace, but it was a long journey.
I started at the age of 39 summer and then I had her at 43. So it was a long road, but it was worth it because I now have this little beautiful little girl thanks to the gift of donor egg donor donation and actually a sperm donor. She is a double conceived because I'm a single mom by choice and she truly is the love of my life. And if anyone I know a lot of times with endometriosis you might have a hard time conceiving and they might suggest a route of donor embryos or egg donors or adoption. Honestly, once you hold that baby, it does not matter. They're your child, you birthing them, you carry them, they're yours. So if someone is ever just a little hesitant because they feel that they might have not had that genetic, that connection to their child, you will trust me. I think anything, I think I'm a little bit more overprotective of her because I fought so hard for her. So I'm just grateful for her. So yes.
What kind of emotional support system did you have and what kind do you wish you had had during all of this?
I had a lot of support from my endo sisters. Some of them were here. You also develop a community within the infertility world. Mine was more specifically for women who were going through egg donation and we would cheer each other on because the process is hard. You are already going through egg donation, which is hard. You're giving a piece of yourself up and then with egg donation, you feel like there's more of a guarantee that you're going to get that baby because you're not using your own eggs. And then when it doesn't happen, when there's a delay of it, there's complete devastation, like what is the next step if this doesn't work? So they were really there to lift me up more so than sometimes my mom, she was a little bit more protective. She was more like, well, it shouldn't be this hard. Why is this so hard? Maybe you should go the other out of maybe adoption. And I'd be like, no, no, that's not what I want to do. I just kind of reached out to my Indo sisters and to my infertility sisters as well.
Thank you. Alexandria, what kind of suggestions do you have for people who are just starting?
Yeah, I would say that, and I really admire your story so much, and in some ways my emergency surgery was very traumatizing. But in the same sense it was a blessing because I got my diagnosis at that point and I was able to get ahead of it and take control that I had an earlier point in my life. So as much as I lost an ovary and it was traumatic, I was from a younger age able to get that. I didn't have to wait that really long period of time. My diagnosis was probably five years from my period I was 19. So I would say just trust yourself. I do think support systems are really good. It's really hard when you're in pain fatigued to advocate for yourself and you're going to these appointments and you're emotionally distraught. You don't know what's wrong with you.
So having someone come to appointments with you if you can, I think is a big thing. My mom always came with me to my appointments. I would say another thing is to also, something that was really powerful for me was I started my health binder and every time I would go to appointment, I would ask my doctor to print out their doctor's notes or send them to me. And every time I got a MRI or an ultrasound, I would ask for all of the readings of that and just keep my own copies of them. It becomes so overwhelming when you're going to different providers and getting different opinions and they're asking you to say your story. What are your symptoms? How long have you been feeling? When did this start? You're so emotionally just at your wits end. It's really, really hard to put that into words.
And I find sometimes that's why it's easy to get dismissed because you kind of just seem a little bit elusive and you don't know how to put into words what's happening to you. So I had this binder and it was like my little bible I would take to every appointment with me and I'd be like, here's what's happened here is I write down when I had a period, if I was having pain, where was it situated? And that way I didn't have to rely so much on myself. When I would go to appointments, I'd be like, this is everything in here about what's going on with me. And then I would just keep adding to it as I went. But having support, I think at the end of the day, it's so hard to do it on your own and I wouldn't have been able to do it with my mom. Obviously I'm from Canada, so I had to travel here for a consult. So just having someone believe in you, because I think your work can be dismissive, taking time off of work and things like that. So having people who stand by you, even through the hard times before you get that diagnosis or before you have a plan in place is a big deal too.
Thank you. Do you have any suggestions for anyone else who might have to make that emotional decision to shift to donor eggs?
If you are a little bit hesitant, you can reach out to their wonderful support groups. For women who use egg donation, reach out to us. You can reach out to me if you have any questions. I'm an open book and I had to go to therapy. You had to go to therapy sessions to actually process the loss of your genetics and be okay with that. And find out once my daughter's older, how to navigate the conversations of telling her that she is donor conceived. That's something I don't want to hide from her. So my next step is going to be that I have books and stuff like that. I know she's a little too young now, but I want to start that process now so that she knows it's the norm for her. She was chosen. I'm blessed to have her as a gift. It was let. So that's also what I have to say.
That's great. Thank you. Let's have some questions from the audience. Beck, we got a microscope out there. Do you want my microscope? Here comes a microscope.
I, thanks. Hey, can you talk about your, you said you did an autoimmune protocol. I think from a diet standpoint, that's something I hope is more discussed today because I think a lot of women are developing mental issues around food and being afraid that what they eat is going to make their cramps worse. And I think I have a lot of friends that have different autoimmune diseases that have done the protocol and the whole 30 thing, and it's not supposed to be meant to done. Right. So I was just curious if you could share a little bit about your experience to finding those specialists who helped you find that care
Just by researching. There's a great Facebook group that talks about protocols for women who are having difficulty conceiving. There are not too many reproductive immunologists. It's maybe about four or five in the country. So some of them are longer waits, but you just kind of seek out uncons with them. And they do very, very, very extensive testing. It took about five months of testing before everything came back where my physician had recommended immune protocol. That was specifically for me. I mean, there are some clinics that just kind of do more of a generic one, but I think it's important that you want to have one that focuses on what's wrong with you so that they can try to help you along that process.
And one additional question.
Yeah, I think that's a huge thing. We didn't have insurance coverage coming from Canada. I'm really blessed that I had parents that were able to help me financially to come and get this treatment. I know that it's not an option for a lot of people. That being said, a lot of people would be like, why didn't you get treatment in Canada? There is great endometriosis specialists in Canada. It's just the weight was really long. And for me, fertility was really important as well as my quality of life at that point. Again, a lot of panelists have talked about this. I had been living with debilitating bowel pain and stuff for a while, which obviously it was really important for me to get that fixed too. But what the one ovary fertility was at top of my mind, I would say advocating for yourself. There is a lot of surgeons that will do surgeries at different costs and things like that.
You don't need to come to Manhattan per se, to come for surgery and see that. But I think that a lot of communities can help. You can do GoFundMe to help you. I've seen people who struggle with endo and they need to, they want to get a surgery and are going to Europe or per se, starting things like that. I think the power of community and getting your voice and your story heard is really important. But I don't take for granted knowing that we did have the ability to come here and get things done in a timely manner. And I think that's why it's really important though, to have these conferences and bring awareness to it because it's not fair that some people would have to wait that long and be stuck with no options. So I think that the more we talk about it and the more we tell our stories, we can express how waiting 14 months for care, waiting 12 months for a consult that's not even for surgery, isn't really acceptable.
And again, like the panelists said, no one wants to be going to these appointments. No one wants to be in pain. So when you're in pain and then you're told wait another 14 months to get treatment or see someone, it is so mentally challenging. So to even then have the ability to go and do more research, you just feel so dismissed. So I feel like the more we talk about it, hopefully more doctors will want to get into this field and then it won't be these long waits. It can be within your area. You have five that you could go to. There was only two in my area that I could have chose to went to, and some were an hour travel just from that. So it's hard and it's, it's really unfortunate that some people would not be able to have those options. I totally can acknowledge that. And it makes me really sad.
I'm just going to address that. So I had to pay for everything, most of it on my own. I had went through, not one, but two egg donors. So the first egg donor I used my 4 0 3 B, I took money out of my 4 0 3 B. My second one, I will talk to you personally about that. I don't want to share it, but another route that you could go, which was able to pay a majority of my second egg donor. But I also went to a different clinic, created my embryos at a clinic in Utah and shared an egg donor, which was a lot less than paying for a full cycle yourself and then had my embryos shipped to New York City. So we have options. There are options.
I'd like to thank you for sharing your stories. Appreciate everything you've done for us. Thank you. Now.
