Episode Transcript
[00:00:01] Hey friend. Today's topic comes with a gentle content note for fertility challenges and pregnancy loss.
[00:00:08] If you need to pause or skip, please take care of your heart.
[00:00:12] I'm Alyssa and this is Glow in the Chaos. We are talking about how chronic illness can affect fertility and miscarriage risks, what the science actually says, where the gaps are, and how to advocate for yourself.
[00:00:26] Chronic illness is more than just a list of symptoms. It touches decisions about family, timing and treatment.
[00:00:34] Some conditions raise the risk of miscarriage or make conceiving harder.
[00:00:39] Others are mixed or we just don't have large definitive studies yet. I'll highlight what research shows, especially around hypermobile Ehlers Danlos syndrome or HETS, and also share big picture takeaways to bring to your doctor.
[00:00:55] First, I just want to kind of tell you my story.
[00:00:59] My. Excuse me. My husband and I tried for two years to get pregnant. I have always had irregular cycles. So and I also have polycystic ovarian syndrome. So this is five years. So this is about almost six years ago now we are talking about. So we'll go back in time. At that time I only knew that I had polycystic ovarian syndrome and irregular periods.
[00:01:23] So we tried for two years to get pregnant.
[00:01:27] We tried using metformin to help me ovulate and different things, just medications and supplements.
[00:01:36] Eventually we just decided to, we just decided to stop trying because obviously if you are someone who is battled infertility and kept getting those negative pregnancy tests, you know how absolutely emotional, emotionally taxing and tiring that can be on not only yourself but your family as well.
[00:02:01] So I would say probably about six months after we tried, I just decided one day to randomly take a pregnancy test. Just because that's kind of what you do when you have infertility. You just kind of take them whenever. Cause you're never sure because you don't always have your period. Anyway, so I took a pregnancy test and lo and behold I got a beautiful pink positive sign.
[00:02:30] So you can only imagine how my heart sank. I immediately like sank. But for being excited, I immediately called my husband and was just over the moon. And I took about probably six more pregnancy tests which of course were all positive.
[00:02:45] So then of course we did all the things. We went to the doctor, we got, we got ultrasound or no, I'm sorry.
[00:02:56] We went to the doctor, got our blood tests, got confirmed that it was we, I was pregnant. And we did all of the normal pregnancy blood tests and then we scheduled my 10 week ultrasound. So all through that time everything felt normal as far as pregnancy, I did have morning sickness, but that was really the only symptom, that severe symptom that I had, luckily.
[00:03:20] So everything seemed like it was moving along as it should. So the date comes around for my 10 week ultrasound and I drink the four bottles of water. My bladder is ready to burst. And here we go. Let's go into the ultrasound room.
[00:03:38] So it took a little bit longer. They did the ultrasound on my abdomen first and then they did a transvaginal ultrasound as well. So automatically, once they decided to do the trans vaginal ultrasound as well, I was a little bit nervous.
[00:03:59] Of course I'm looking at the screen, but I don't know what I'm looking at. Right.
[00:04:05] So, okay, they get done with that and then they say that I need to wait just a little bit for the radiologist to come in and talk to me.
[00:04:17] So he comes in and talks to me and lets me know that unfortunately we did lose the baby.
[00:04:25] They were able to measure the, the fecal sac in there or. I'm sorry, I don't know what I'm saying. The uterine sack where the baby would normally be. But there was a sac measuring eight weeks but no baby. So we found out that we lost our baby.
[00:04:53] At that time, I didn't know that I had any other chronic illness conditions.
[00:05:00] But after the miscarriage, obviously that kind of spiked different issues like anxiety, depression. It kind of heightened those things which I think maybe triggered or flared.
[00:05:16] I'm not sure. I haven't, I don't know enough about it, but I am actually curious if having the miscarriage might have flared up the autoimmune symptoms and kind of just made it get worse from there.
[00:05:33] So after that I was diagnosed with hypermobile Ehlers Danlos syndrome just this last year and postural orthostatic tachycardia syndrome.
[00:05:44] So after I finally got my diagnosis and I was thinking, I wonder if there could be any correlation between autoimmune disorders and infertility and miscarriage. I mean, it seems very likely in my head because it all has to do with your body fighting itself and fighting healthy tissue. So in my mind that would make sense. So I decided to do a little bit of research. I did also make a post on my TikTok probably about a month ago asking other women if they with hyp with different chronic illness conditions and autoimmune conditions if they have experienced pregnancy loss as well. And there was a significant amount of women who have. So I decided today to look a little bit more into it and I wanted to see if there was actually research done. And there has been not a whole lot, but we will kind of go through some of the facts that I found.
[00:06:45] So they found that systemic lupus pregnancy and lupus carries higher risks, including miscarriage and other adverse outcomes. The risk is strongly tied to disease activity at conception and during pregnancy. Meta analysis and updated reviews support this.
[00:07:04] Celiac disease People with untreated celiac have higher odds of adverse pregnancy outcomes, including miscarriage risk largely improves on a strict client gluten free diet. So the studies have shown that if you, I guess stick to the strict gluten free diet that the risk decreases. So that's awesome.
[00:07:27] Inflammatory bowel disease Fertility can be reduced during active disease Pregnancy risks vary by activity, severity and prior surgeries. Expert guidance and meta analysis detail this nuance.
[00:07:42] Rheumatoid arthritis Many patients experience prolonged time of pregnancy greater than 12 months compared with the general population.
[00:07:52] That's interesting. I've never. That's. Wow. That's a very interesting fact. Disease control and medication selection matter.
[00:08:00] Pcos, which is not always labeled chronic illness but common in our community.
[00:08:06] Newer Meta analysis shows 50% higher odds of miscarriage. Overall risk isn't just about IVF and persists across areas.
[00:08:20] Hypermobile Ehlers Stanlos syndrome Focus what do we actually know?
[00:08:25] Okay, so the evidence on this is mixed, but several studies and reviews report higher rates of miscarriage and other obstetric complications among people with Ehlers Danlos syndrome and hypermobile Ehlers Danlos syndrome while also emphasizing the need for better, larger studies, right? Yes, definitely.
[00:08:45] A 2022 population based analysis comparing women with EDS to those without reported more adverse outcomes, including miscarriage among the EDS group.
[00:08:59] Earlier literature and case series echo elevated miscarriage and infertility reports, but the sample sizes are small and diagnostic criteria have evolved, so interpret cautiously.
[00:09:12] Patient facing clinical guidance. Summaries also note higher spontaneous abortion rates, miscarriage in EDS and HEDS cohorts with wide ranges due to study differences.
[00:09:26] So let's talk about hypermobile Ehlers Danlos syndrome. Some reviews and cohort data suggest people with EDS, including HEDs, report more miscarriages than controls.
[00:09:39] One 2022 analysis found higher rates of miscarriage and other adverse outcomes in women with EDS versus women without eds.
[00:09:48] But here's the nuance. The studies are often small.
[00:09:51] Diagnostic criteria has changed and we definitely need more high quality data. Bottom line, if you have heds, ask for a preconception counseling, a coordinated care plan and monitoring tailored to your joints, connective tissue and autonomic symptoms.
[00:10:12] Okay, let's talk a little bit about pots Postural orthostatic tachycardia syndrome. Many in our community also live with pots, myself included. Now research here is very limited.
[00:10:22] Small series report miscarriages, but we do not have strong evidence that POTS itself raises risk independent of other factors. So management is individualized. You know the hydration, hydration, compression, MET compression meds review.
[00:10:38] So always make sure to loop in cardiology and your OB GYN early in your pregnancy if you do face pods.
[00:10:49] So now that we have this information that there is definitely an increased risk of infertility and miscarriage relating to autoimmune diseases, how do we advocate for ourselves? Like we need to be able to talk to our doctors about this and and not have them blow us off. We need to come to them with the facts and the knowledge that we have so we can try to have a better outcome.
[00:11:14] So bring this checklist to your next visit.
[00:11:19] Disease Activity Aim for the lowest safe activity before conception. This matters in lupus, rheumatoid arthritis and irritable bowel disease.
[00:11:30] Do a medication audit. Which meds are pregnancy safe and which needs spacing out?
[00:11:35] Make sure to get your nutrition and labs done. You need to check your iron folate, vitamin D screen for celiac if you've had unexplained miscarriages or infertility. Strict gluten free reduces risk when celiac is present.
[00:11:49] Maybe consider getting a high risk OB referral. Ask for maternal fetal medicine if you have lupus, IBD with active disease, HEDS or complex comorbidities.
[00:12:02] Written plan have a flare protocol, pain strategies, physical therapy for HEDs and who to call after hours if you face loss or long waits. You are not alone. Data can guide care, but your story matters for listeners of faith. I am praying you feel held and seen in this season.
[00:12:28] May you find clinicians who listen plans that protect your body and peace for your heart loss and infertility.
[00:12:39] They are such a difficult issue. It doesn't matter the statistics, it doesn't matter the studies. It never will make going through this any easier at all. But the more information that we can arm ourselves with, I feel like the better outcomes we can have in relating to infertility and miscarriage and just being able to better prepare our doctors, better prepare our bodies, our minds and be hopeful for more positive outcomes. I hope that this episode find somebody who needs it. I hope this information maybe is comforting in some cases to you. It is to me. After after our miscarriage five years ago, we did not we decided to not keep trying because we just didn't want to keep putting my body through that, putting myself and my husband through that emotionally. I do have a stepson, so I am a mama. I am very blessed, so blessed with a stepson who is almost 15 years old. I have been with him since he was three so I definitely am blessed from the Lord with my son.
[00:13:57] If you are still struggling moms, please hang in there. Or future mamas hang in there. Have faith, do your research. Arm yourself with this knowledge.
[00:14:08] If you need to talk, please please feel free to reach out to me on this podcast.
[00:14:14] I know what it's like to hurt and cry and be bitter and angry.
[00:14:20] And as we have talked about in previous episodes, all of those things as well can flare our chronic illness symptoms. So it's just a vicious cycle. So please, if you need to talk, reach out. If it's not to me, to somebody that you love, make sure that you are talking and not closing yourself off.
[00:14:41] I love you ladies. I am so very glad that you listened to this episode.
[00:14:47] I hope that you hang with me for future episodes.
[00:14:51] As always, if there is a topic you would like covered, please drop it in the comments below. I will do my best to research it and dive into it and talk about it.
[00:15:01] I hope you all have a wonderful Friday and as always, until next time, keep glowing in the chaos.
