EPISODE 27: Infertility and Miscarriage-The Unseen Ascent

ALYSIA: Hey, everyone. Welcome to another episode of Autoimmune Adventures. Today is a very important and sensitive topic. We are going to be talking about infertility and miscarriage and how autoimmune diseases can play a role in these experiences. We know that this is a tough topic, but it's one that many people with autoimmune disease face. And it's important that we talk about that. We want to acknowledge that if you're listening, and this is something that you have experienced, we see you, and we are here to offer information and support.

First, our good bit minute. Exciting advancements are bringing new hope to women struggling with infertility linked to immune system issues. Research shows that identifying and treating underlying immune related factors can significantly improve pregnancy outcomes. More doctors are recognizing this connection, so fertility care is beginning to evolve to include specialized testing and targeted treatments. Women should be encouraged to advocate for comprehensive evaluations, as early diagnosis can really open doors to personalized solutions. This wave of awareness is not just transforming individual lives, it's revolutioning how reproductive health is approached. It is offering optimism and new beginnings to countless families.

STACY: Before we really start, I just wanted to share that I have personally experienced multiple pregnancy losses, and I know firsthand how heartbreaking and isolating it can feel. This episode, ladies and gentlemen, is difficult for me because it is something I have a very clear understanding of, and if you'd like to hear a little bit more about that please feel free to refer back to Episode 2 when I talk a little more about my own personal experiences. But today we wanted to take it not from my standpoint, but from the standpoint of the greater good for everyone involved.

As the song from Les Mis says, "There's a grief that can't be spoken. There's a pain goes on and on." And these words really resonate, because loss like this is so hard to put into words. But as difficult as my journey was, and as many of your journeys have been, I'm incredibly grateful to see how far things have come since I started to try and grow my own family. When I was going through this, there was so little awareness about how immune system issues could impact fertility, and doctors rarely looked beyond the basics. I felt like I was just being told to keep trying without being given any real answers. Now, there's so much more understanding, better testing, more targeted treatments that give people real hope, and it makes me very happy to know that women today have better access to knowledge, support, and medical options than ever before.

If you're going through this or if you have experienced a loss, I want you to know that you're not alone and there's more help out there than ever before. You deserve answers, and you deserve a doctor who listens. And we're here to have this conversation with you so that we can offer support and remind you that there is hope.

BECKY: Exactly. A lot of people don't realize the deep connection that there is between autoimmune diseases and reproductive health. It's honestly huge. When the immune system mistakenly attacks the body's own tissues, it can affect The organs responsible for conception and pregnancy, which makes it harder to conceive or sustain a pregnancy.

Today, we'll break down that connection, discuss some of the challenges and highlight ways to cope and find hope on this journey. And just to emphasize that, we want this episode to be a source of encouragement for those of you that are in the trenches with this right now. If this topic is emotional for you, we encourage you to reach out to a trusted healthcare provider, a friend or a support group. You don't have to go through this alone. And in the future, we hope to bring in guests who have personal experience with infertility and miscarriage related to autoimmunity, because hearing real stories can be incredibly powerful and validating. And we have actually had comments from some of you about wanting to hear more on this topic.

ALYSIA: So, let's start with the basics about understanding the connection. The immune system's job is to protect our body from harmful invaders, but in autoimmune diseases, it mistakenly attacks the body's own healthy cells. When this affects the reproductive system, it can lead to infertility or miscarriage by causing chronic inflammation, disrupting hormone balance and triggering blood clotting issues.

And inflammation is a major factor as it can interfere with ovulation and egg quality. It interferes with implantation and even with your ability to sustain a pregnancy. So hormonal imbalances caused by autoimmune diseases, like Hashimoto's, can lead to irregular cycles or difficulty maintaining a pregnancy.

Additionally, conditions such as antiphospholipid syndrome increase the risk of dangerous blood clots that can restrict placental blood flow and lead to miscarriage. So while some individuals with autoimmune disease have successful pregnancies, other face significant hurdles, and understanding this connection can help people seek the right medical support, and they can explore treatment options that are going to improve their personal chances of a healthy pregnancy.

BECKY: There are a lot of autoimmune conditions that can cause problems with fertility. And I know Stacy, on your journey, you had at least three, and some of them, like celiac disease, for instance, people don't necessarily think would impact pregnancy, but would you like to tell us more about that?

STACY: I think there is a lot to do with celiac disease because it affects the way that we absorb nutrients. If you have celiac disease and you're living a gluten free diet, chances are pretty good that it will not affect your reproduction. It's when we're undiagnosed it becomes a problem. However, there are two things that I have that are very problematic, I guess is how I'll put it, when it comes to reproductive health. The first is Hashimoto's, which I was diagnosed with early on, and this is an autoimmune condition that targets specifically the thyroid gland. And since thyroid plays a critical role in regulating reproductive hormones like estrogen and progesterone, any disruption can affect ovulation, menstrual cycle, the ability to sustain a pregnancy, especially if you have an underactive thyroid. If you have hypothyroidism, which is what Hashimoto's is, then it can slow your metabolism and that will lead to fatigue and weight gain, which can also complicate fertility.

I already knew about my Hashimoto's when I was having my problems with pregnancy. And so in later years, it was discovered I had lupus. And the reason that lupus was a problem for me was that it's the systemic autoimmune disease that causes chronic inflammation in all of your organs, including those that are for reproduction. And when inflammation spreads to the uterus and the placenta, it can interfere with the implantation and fetal development.

And that is why I was unable to have children is because I had undiagnosed lupus. Celiac disease was a little bit problematic. Hashimoto's was more so, but lupus was really what made it pretty much impossible for me to have kids. Even though these are just examples, they illustrate how autoimmune disease can create some serious unique challenges for conception and pregnancy, because these conditions impact different systems in the body that are really kind of crucial to you being able to carry a baby safely.

And if your health care providers are in your corner and they're willing to help, you can have a baby with Hashimoto's. You can have a baby with lupus. But I'm gonna be honest, it's really hard if you have both of them. Not impossible, but it's very, very difficult. So, we have a lot of challenges that people wouldn't otherwise have, but I don't want people to think, "Oh, well, Stacy wasn't able to have kids, so I won't be able to have kids." That's simply not true. A lot has changed in the last 15 years since I actively began trying to have kids. So I want everyone to understand that the world is a very different place now. There's other things we need to be concerned with as well.

Becky, can you tell us a little bit about endometriosis?

BECKY: Yeah, this is one that I battled for a long time before I had to have a hysterectomy. After I had breast cancer, I went through premature menopause, and it was kind of the nail in the coffin that I wasn't going to be able to have kids. And so that was when it was decided, but I had battled for well over a decade before that with endometriosis.

It's technically not always labeled as an autoimmune disease, although it does have connection to autoimmunity. But the problem with endometriosis is it still triggers an abnormal immune response, leading to inflammation, scarring, tissue growth outside of the uterus. This causes a lot of pain. It disrupts your reproductive functions and it creates significant fertility challenges.

Fortunately, again, if it's discovered, if it's diagnosed, there's a lot that they can do. These adhesions that often block the fallopian tubes or cause ovarian cysts. It can impact the egg quality, the inflammation that interferes with it, interferes with implantation. And studies show that about 50 percent of women with endometriosis actually struggle with infertility.

There's also a higher risk of miscarriage and pregnancy complications, like ectopic pregnancies or preterm birth for people that have endometriosis. But that said, like I mentioned, many people that have endometriosis can go on to have successful pregnancies, whether they get hormone treatments or medical support like surgery or IVF.

I remember this has been a couple of decades, so it's probably even improved now, but I remember my OBGYN saying that more than 70 percent of people that got treatment for their endometriosis were able to very successfully conceive. So again, it's about getting that diagnosis and getting it taken care of.

ALYSIA: I think another important condition to mention, um, the antiphospholipid syndrome. It's an autoimmune disorder that causes the blood to clot more easily than it should. So that is especially problematic during pregnancy because you need proper blood flow. That is essential for having a healthy placenta.

So if blood clots form when they don't need to, they can reduce oxygen and nutrients to the baby. And that's going to also increase the risk of miscarriage and stillbirth and preeclampsia and other complications. So APS is a leading cause of reoccurrent pregnancy loss, but the good news. is that with proper diagnosis and treatment, often involving blood thinners like aspirin or heparin, many women with APS go on to have successful pregnancies.

These examples highlight how closely autoimmunity and reproductive health are linked. So if this is something that you are struggling with, you've got to work with your medical professionals. You're going to probably need a team of several doctors if you are trying to conceive and carry a pregnancy. If it's something that you want to do in the future, take care of yourself now. Get into your doctors now. Start treatment now, because as Becky said, when you have early intervention, it can be a game changer for allowing your body to help support healthy pregnancies in the future.

STACY: I think that one of the biggest hurdles that people face is simply getting a proper diagnosis from their doctor.

ALYSIA: Absolutely. The biggest hurdle.

STACY: Many women who are struggling with infertility or repeated miscarriages don't realize their autoimmune condition could be the root cause, and I certainly didn't know. I thought, well, I have Hashimoto's, I'm taking care of my thyroid, everything is fine. And when I kept having miscarriages, my doctors were like, "I don't know, it's a mystery. I don't know, it's a mystery." And I wouldn't say that these doctors just didn't care. I think they were just clueless.

ALYSIA: You know what I think part of the problem is? I think part of the problem is that we have, I mean, it's a good thing that we have specialists, but we need a doctor who looks at the body as a whole that says, okay, the reproductive system is closely linked to the immune system.

If there are reproductive issues, it's not unlikely that there are autoimmune issues. But I honestly think that doctors, they just stay in their wheelhouse. You know what I mean? Which is not a bad thing per se, but at the same time, it's really not helping patients that have issues that are affecting their whole body.

STACY: I don't think that a lot of people take into account the fatigue and things like joint pain and digestive issues, which I think some doctors would feel are unrelated to fertility. I think that they don't understand they're just a delayed reaction to an underlying issue or an autoimmune disease. You know, when I was diagnosed with celiac disease, I was having violent heart palpitations and an inability to consume anything normally.

Like, everything I ate made me violently ill. Well, no one can tell me - knowing what I know now and not what I knew then - no one can tell me that that wasn't affecting my reproductive health. If you can't consume food and have it safely give you the nutrients you need, how on earth could you have another person fortified and helped within your own body when your own body is like completely rebelling against you?

ALYSIA: Right? I think just the simple fact that autoimmune disease. causes such inflammation in our bodies, that right there should be enough to know that it's going to affect our fertility and our reproductive system. Just inflammation alone. There are so many other things that come into play, I think.

STACY: I think it's just really unfortunate the many healthcare providers don't automatically test for autoimmune markers when they're diagnosing fertility problems.

Countless women go through years of unsuccessful treatments without ever addressing the real cause. It's like trying to put out a fire by blowing the smoke away instead of actually addressing the fire itself and what is fueling it. So I had Hashimoto's for years before diagnosis. And I had lupus for probably 20 years before I was diagnosed, and I lost eight babies because of that.

When I tell you that I felt broken and I felt like I had done something horrible, when in reality it was just my poor body crying out for help.

BECKY: Yeah, and it's such an important point because often fertility workups focus on hormone levels, structural issues like fibroids, block tubes, sperm health, which are all important when you're looking at fertility, but they often don't include screenings for autoimmune related problems.

Fortunately, in our good bit minute, like we said, it seems like that is becoming something that more health care providers are aware of, which is so good because it's frustrating. Autoimmunity can be such a hidden factor in so many cases. Whether, like we talked about, whether it's endometriosis, Hashimoto's, lupus, APS, proper testing is needed.

Without it, women can be prescribed treatments that don't fully address their needs, and it could continue their struggles and emotional distress.

We're here to tell you again, like we always say, advocate for yourself. If you've had miscarriages or you're struggling with a pregnancy and you have some of these symptoms, Go in and ask. Get answers. Fight for it. If your doctor is not listening to you, find another doctor. And I know we don't say that lightly. It is hard to find good doctors. It is a pain. Sometimes it takes weeks, months to get into them. But if this is something you're struggling with, it is absolutely worth it. Advocate for yourself and get somebody who is going to be on your team and help you find an answer.

ALYSIA: Yeah, Becky's totally right. You have to advocate for yourself. It is so crucial. So if you suspect that there's an autoimmune component to your reproductive struggles, and you go to your doctor, try to educate yourself beforehand. Do your research beforehand so you have an idea of what you're talking about and what you're asking for because you might need to specifically request certain tests that maybe they won't think to look for. And don't be afraid to ask your doctor to run tests that they don't suggest. They work for you. You might want to consider testing ANA, your anti nuclear antibody levels, thyroid panels, antiphospholipid antibody tests. You're going to want to maybe look for markers of systemic inflammation, CRP, or ESR.

Some doctors, they just really don't routinely test for those things in fertility workups. So be informed, be proactive. It really can make all the difference. The more information you have, and the better equipped you are when you go in to talk to a doctor and find a treatment plan that's going to work for you, whether that's medication, lifestyle change, or a combination of all of that, it's going to put you in a better place to find those answers that you need.

And your healthcare team might just take it a little more seriously when you go in there and say, listen, I have done my research. I think this may be a problem. I would like to test. I would like to figure out what is going on. And don't take "no" for an answer. Don't take "I don't know" for an answer either. You deserve answers and your healthcare team should take your concerns seriously.

STACY: We've talked a lot about how to be proactive so that you can have a successful pregnancy or so that you can at least attempt to put everything you can into having a successful pregnancy. But as someone who is sitting on the other side, this is what I need you to understand. Beyond all these physical challenges, infertility and pregnancy loss take an immense emotional toll. The grief that you feel, the guilt. The anger, the frustration, they are very common. And when you combine these with the struggle of living with an autoimmune disease, it's extremely overwhelming. And one of the hardest parts that we have is isolation.

When I lost my third baby, my two best friends at the time were pregnant. Both of them had successful pregnancy. Those beautiful babies are turning 17 this year. And I'm here to tell you, I felt very alone. And even though they love me. They could not possibly fill the void that I felt. It isn't easy to talk about this and those of us who have experienced it.

I don't know that anyone who hasn't can really truly understand. People can be there. They can support us. They can love us, but they cannot possibly know the gaping void that we have in our heart and our soul, and not just in our heart and soul, but the pain that we feel, because in my case I wanted my husband to be a father, and now he couldn't do that. I wanted my friends and my sisters and brothers to be aunts and uncles to my kids, and now they will never have that. And guys, I don't want to make this sound simple because it's not, and if you're hurting, and you're angry, you are allowed to be angry, but you need to remember that there has to be something after the anger.

You cannot dwell in it forever. It will eat you alive, so that is where you learn to be proactive, and you learn to help other people. And that is why I am here today, because I don't want anyone to ever feel the pain that I felt. I don't want anyone to ever feel as powerless as I felt while I was trying so hard to have a family.

BECKY: And guys, remember your grief is your grief and for those of you that are having infertility or losing babies and having miscarriages because of autoimmunity, it's a double grief. You have grief because if you do get the diagnosis, you're going through the normal grief that happens of being diagnosed with an autoimmune disease that literally changes your life. And that is a very different grief than losing a baby or being unable to conceive one. Like I said, everybody's grief is different.

Don't let other people tell you how to define your grief, whether it's for the autoimmune disease or for yourself. I know for me, I am a stepmother of three children who I love and adore, and I am so grateful for, but that does not change the fact that I had a lot of grief about the fact that I was never able to get pregnant.

It doesn't mean that I love my children any less. And I have had some people try to convince me that it's okay, because I was able to be a mom. I'm grateful that I was able to be a stepmom, but recognize that people aren't always going to understand your grief. It's yours and it's okay. And part of that isolation, we're hoping you won't feel isolated when we say, there are people out there, your grief is unique to you, but at the same time, there are people who have had similar experiences who see you. We see you, we love you, we support you, and we want better for you than we had for ourselves.

Professional counseling can be invaluable as you're dealing with your grief. A therapist specializing in fertility issues can actually help you navigate the emotional ups and downs because losing babies and even just the horrible battle of going through infertility or, in some cases, people that have adoption placements that fall through, whatever it is, that grief of losing what you're trying to gain when you're already struggling with losing your health, get somebody on your team that can help you deal with that.

You don't have to go through it alone. If you're struggling with infertility or miscarriage due to autoimmunity, seek support, explore different paths to help you move forward. Healing is not linear. It's not a switch that you flip. It is going to be something that is a lifetime. Stacy and I are living proof of this. We are a few decades past when we were in the thick of, in her case, having miscarriages, and in my case, being infertile, and not being able to have babies, but it impacts you, it's still there, decades later, that grief does not go away. You learn how to deal with it in your life, but it is always there, and the key is getting that help, so you can learn how to move forward. Be kind to yourself. Hold on to hope, because it is out there. Remember you are not alone.

ALYSIA: We're gonna just put another plug in for advocating for yourself. When it comes to our health, especially our reproductive health, advocating for yourself is absolutely crucial. You deserve a doctor who listens and understands the connection between autoimmunity and reproductive health.

Finding that doctor, one who's going to take your concerns seriously and work with you on a personalized plan can be difficult, but it can also make the world of difference. Don't hesitate. Ask questions. Don't hesitate to look for a second opinion. Don't hesitate to push back and find the care that you need.

We'll share additional resources in the show notes, including support groups and expert recommendations. But if you are going through this, please know that we're here for you. Reach out to a trusted friend, a support network, a healthcare professional. You deserve understanding and support and the best possible care.

STACY: Thank you for tuning into autoimmune adventures. We hope that this episode has provided comfort and insight and an understanding that you truly are not alone if you're going through this, this episode was inspired by my own journey, the journey of my sister, Becky, and the experience of friends from my miscarriage support group who specifically requested it.

We would love to hear from you. Let us know what topics you would like to explore. We're here to bring you the information that matters most to you. So visit us at autoimmuneadventures. com where we have included over a page of resources in our show notes, so that you can find help for yourself or a friend in need of support.

And always remember. You are worthy of joy, no matter what your body chooses to do to you. You can choose joy. Your disease does not define your life. You do.

Support Groups & Online Communities

• Resolve: The National Infertility Association (resolve.org) – Provides support groups, advocacy, and education for infertility.

• Pregnancy After Loss Support (PALS) (pregnancyafterlosssupport.org) – Community and resources for those pregnant after loss.

• AutoimmuneMom (autoimmunemom.com) – Support and education for women with autoimmune diseases, including fertility discussions.

• Facebook Groups – Search for autoimmune infertility or miscarriage support groups for shared experiences and peer support.

• Reddit Communities – Subreddits like r/infertility and r/ttcafterloss provide a space to connect with others experiencing similar challenges.

Medical & Research Organizations

• American Society for Reproductive Medicine (ASRM) (asrm.org) – Research, guidelines, and support for reproductive health.

• Society for Assisted Reproductive Technology (SART) (sart.org) – Find fertility clinics and success rates.

• The American Autoimmune Related Diseases Association (AARDA) (aarda.org) – Information on autoimmune diseases and their impact on fertility.

• The Endocrine Society (endocrine.org) – Research and guidance on hormone-related disorders affecting fertility.

• Reproductive Immunology Associates (reproimmuno.com) – Specializes in immune-related fertility issues.

Books on Autoimmune Infertility & Miscarriage

• Is Your Body Baby-Friendly? by Dr. Alan E. Beer – Discusses reproductive immunology and how the immune system affects pregnancy.

• Not Broken: An Approachable Guide to Miscarriage and Recurrent Pregnancy Loss by Dr. Lora Shahine – A compassionate look at pregnancy loss and treatment options.

• The Autoimmune Solution by Dr. Amy Myers – Explores lifestyle changes for managing autoimmune diseases, which may support fertility.

• It Starts with the Egg by Rebecca Fett – Science-backed advice on improving egg quality and fertility.

Holistic & Alternative Support

• Mayo Clinic’s Guide to Fertility & Conception (mayoclinic.org) – Expert-backed insights on fertility.

• Acubalance Wellness Centre (acubalance.ca) – Fertility-focused acupuncture and integrative medicine.

• Mind-Body Programs for Fertility – Consider programs like Circle+Bloom or Fertility Yoga for stress management and hormone balance.