What happens when you know something is wrong with your body, but every answer seems to lead to more questions? In this powerful episode of PCOS Unfiltered, Lindsie sits down with Sophia Reamsnyder to share her extraordinary health journey. What began with painful periods, migraines, fertility struggles, and a delayed PCOS diagnosis eventually unfolded into years of unexplained symptoms, repeated hospitalizations, multiple autoimmune diseases, and countless moments of feeling dismissed by the healthcare system. Rather than accepting incomplete answers, Sophia became her own advocate. Through relentless research, persistence, and finding healthcare providers who were willing to truly listen, she uncovered the underlying conditions that had been affecting her body all along. This conversation is about far more than diagnoses. It's about learning to trust your instincts, asking better questions, partnering with your healthcare team, and recognizing that your body is always communicating with you. Whether you're navigating PCOS, autoimmune disease, chronic inflammation, or another complex health condition, this episode will remind you that you deserve answers, and that your voice matters in your own healthcare journey.
Listening is a great place to start, but lasting change happens when you begin putting these ideas into practice.
Join us inside the Healthy Ever After app, where you'll find:
✨ A supportive community of women on the same journey
🎙️ Every episode of PCOS Unfiltered
🥗 Healthy recipes and meal ideas
📝 Weekly challenges and Body Wisdom practices
🎁 Free guides and exclusive resources
📅 Live trainings, Q&As, and special events
Download the Healthy Ever After app today and join us!
This week, choose one symptom your body has been trying to tell you about...something you've ignored, brushed off, or accepted as "normal."
Then take one small step to better understand it.
That could mean:
Remember, advocating for yourself doesn't mean you don't trust your healthcare team. It means you're an active partner in your care.
Sophia is the founder of Reamsnyder Media, a boutique production company creating documentaries and visual storytelling projects. She is also currently writing a book about navigating chronic illness while continuing to pursue creativity and purpose.
⚠️ Podcast Disclaimer
This podcast is for informational and educational purposes only and is not intended as medical advice. Always consult with a qualified healthcare professional before making any changes to your health routine.
(0:00) When we started doing fertility testing, and they told me at the age of, I think I was like 25, (0:08) that I had the ovaries of like a 45-year-old woman. And they were like, did you know that (0:13) you had PCOS? And I was like, I knew I had cysts on my ovaries, but I didn't know, (0:18) I didn't know about any of that, which actually explains a whole heck of a lot from (0:25) when I was younger and even fertility struggles after. (0:28) Have you ever felt like you knew something was wrong with your body, but no one seemed to believe (0:33) you? Welcome back to PCOS Unfiltered.I'm your host, Lindsie, nurse, health and nutrition coach, (0:41) body wisdom guide, and author of Healing Beyond the Diagnosis. In today's episode, I'm joined by (0:46) Sophia Reamsnyder, whose health journey began with painful periods, fertility struggles, (0:51) and eventually a PCOS diagnosis, but quickly turned into years of mysterious symptoms, (0:56) repeated hospitalizations, multiple autoimmune diseases, and countless moments of being (1:01) dismissed by the healthcare system. What I love most about this conversation isn't just the (1:07) diagnosis, it's the resilience.Sophia shares how she learned how to become her own advocate,
(1:13) research the science, ask better questions, and rebuild trust with her body after years (1:18) of uncertainty. Whether you're navigating PCOS, autoimmune disease, chronic inflammation, (1:23) or simply searching for answers that seem impossible to find, this episode is a powerful (1:28) reminder that you deserve to be heard. Your symptoms matter and your body is always communicating with (1:33) you.Now, as always, this podcast is intended for educational and informational purposes only (1:39) and should not be considered medical advice. Please be sure to consult your healthcare (1:43) provider before making any changes to your diet, exercise, or treatment plan. (1:47) Let's get into it.Here is my conversation with Sophia Reimsnyder. (1:56) Hello, welcome back and welcome to our guest today, Sophia. Her story, yes, it's not super (2:05) PCOS specific, but I love highlighting stories like this because her resilience through lots (2:13) of stuff, which we'll get into, is amazing.And I think just these are the types of stories that (2:18) really, really need to hear whether you have PCOS or not. So, let's get started. So, (2:25) take us back to the beginning.Give us some background. And then, was there a moment when
(2:33) you really, really realized something was going on, something was really, really not right? (2:40) Well, I will go back to the beginning and I'll actually touch on PCOS a little bit. (2:46) When I was a teenager, I had awful periods, so bad that I would have monthly migraines (2:55) that were the weeks leading up to the period, through the period, and after the period.(3:01) So, it was literally like three weeks out of the month that I was suffering with these (3:05) horrible migraines. And they eventually put me on birth control where I was taking it for (3:10) three to six months at a time and then having a period. And things went fairly regular for a (3:17) really long time.And then in my late 20s, I was married to my ex-husband and we decided it was (3:23) time to start looking at having kids. And I remember having severe abdominal pain and I (3:31) went into the ER and they're like, oh, you have some cysts on your ovaries. I was like, okay, (3:36) that's news to me, you know, what does this mean? And they told me that it would be really hard for (3:41) me to conceive.So, there was that reality and they were not wrong. It took several rounds of (3:51) IV, IUD treatments to actually become pregnant with my twins. And that just kind of highlighted (4:00) really my entire life with anything medical.It was always something and it was never easy. (4:10) And, you know, I'm kind of the medical enigma. When I walk into a doctor's office,
(4:17) there has never been a time where I've gotten a neutral reaction.It's always been a jaw drop or, (4:25) oh my gosh, seriously, are you telling me this right now? You know, there's not a lot of people (4:31) I know that have suffered from a vertebral artery dissection, let alone twice. And so, (4:39) there's just always been all this weird stuff that's kind of surrounded me medically. (4:45) In 2021, you know, this was well into COVID, we discovered that I needed to have a three-level (4:53) fusion on my neck that was causing some more headaches.So, I was having them really 24-7, (5:00) 365 days a year at that point. And I had started to lose feeling in my arms and hands. (5:07) And so, we went in and did the fusion, which went phenomenally.Yes, recovery sucked big time, (5:16) but it was doable. And I got through it so well that within the first three months, (5:22) I was ready to start running again. I mean, everything felt better than I had probably (5:27) felt in decades.So, we decided to take one last beach trip. And that's really where my story (5:38) really begins. We went to the beach and I really don't remember anything after a couple of hours (5:47) on the beach.My memory is just completely gone. It's a void. There's nothing there.(5:54) The next morning, I woke up and my throat was hurting and I just didn't feel well.
(6:01) But we went home, I went to the urgent care and they told me, it's just tonsillitis. (6:08) I was like, awesome.So, I still hopped on the plane the next day to go see my kids. (6:13) When I got there and I was taking the tram between the terminals, I remembered grabbing (6:20) onto the pole to steady myself and the pain that just shot through my hand was incredible. And so, (6:29) I looked down at them and they were covered in blisters.And I thought maybe I just stuck my (6:37) hand in some kind of cleaning solution. So, I was like, oh, brush it off, go wash my hands. (6:45) I continued about my plans.And this would be the cycle for probably the next month and a half. Oh, (6:52) it's not that bad. Just keep moving on.Even as things piled on, the fevers, the joint pain, (6:59) eventually not being able to eat food. By the time I went to the doctor about six weeks later, (7:09) I remember I was in the room for about 30 minutes when there was a flurry of activities. There was (7:15) probably about six doctors that came into my room and they were just asking me all these questions, (7:21) not that I can remember any of them.And I remember at the end of all the questions, (7:27) they're like, we're admitting you. And I was like, what do you mean? There's nothing. Yes,
(7:32) my skin is peeling off my body and I can't walk and I have these fevers that I don't know and I (7:36) can't eat anything, but there's nothing wrong.There's nothing wrong yet. This doesn't need (7:42) to happen. It really did need to happen.I needed to be admitted. I ended up staying in the hospital (7:49) the first time for about three weeks. And during that time, they were completely flabbergasted.(7:56) They really had no idea what was going on. And I'm not the kind of person that just sits around (8:04) and waits for answers to come to me. And at the time I was back in school.And so I used our (8:09) school database to research all my bizarre symptoms. And one of the things that popped up (8:15) was adult onset Kawasaki's disease, which is usually a disease that you see in children (8:24) of Asian descent. And my symptoms were so similar that that's what the doctors ran with.(8:31) After they heard that they would not take anything else into consideration. (8:38) They started me on steroids and by no surprise, I started getting better. And I say better, but (8:45) it was more of not getting worse than anything else.And so the doctor sent me home (8:52) and that's when things got really, really scary. Not for myself, but for my family, (9:00) because at that time it still didn't feel like, oh, this is something serious that's going on.
(9:07) I went for about 20 days without eating or drinking anything because I just, I couldn't, (9:14) it would either come up one way or another, or one end or another.And I lost a significant amount (9:21) of weight. I lost about a hundred pounds in that timeframe, just because I literally couldn't (9:27) intake any kind of calories. And there was one doctor that, and I still can't believe he said (9:38) this to me, that it was a good thing that I was losing so much weight because I was so obese.(9:45) And I was like, okay, yes, it is great to lose the weight, but not like this. No. And that was (9:55) the first time, no, that was actually the second time that the doctors were dismissal of what I was (10:02) trying to say to them.And so they ended up putting me back on steroids, rinse and repeat this cycle (10:09) of doctors, steroids, hospitalizations for like the next six months. They still would (10:16) not investigate further. And then it started attacking my vital organs.What I was dealing (10:25) with went after my heart and I started having pericardial effusions. Now we linked the (10:32) pericardial effusions to both the condition that I have and because of the steroid use. (10:38) The steroids were literally flooding my body with water.I was just being (10:46) drownded by these steroids. So finally insurance was like, okay, maybe you're severe enough that (10:56) we should try these IVIG infusions. And I was so sick that going weekly to a hospital or a doctor's (11:06) was not in the cards.So they had a home nurse that came to my house and they would hook me up.
(11:14) And while all this was going on, my husband was there, our children were there and they're just (11:21) watching all of this happen. And the home nurse was really weird too.She was chronically late, (11:30) which is something that is a huge issue of mine. But she was the person that was poking (11:36) needles into my body. So I wasn't going to make a big issue of that.Well, we were looking to move (11:44) back to Colorado at the time. And it was going to be originally another like six to nine months (11:51) before we left. Well, after the pericardial effusions and the doctors really not doing much, (11:58) I went to see my rheumatologist again in Virginia.And during the appointment, (12:04) she just looks at me and she's like, well, maybe you should just get a second opinion. (12:10) That was her response to everything. Considering that within her care, I had already seen
(12:17) infectious diseases.I had already seen all of the ologists that I needed to see, (12:24) except for the two that I actually needed to see. So when that happened, I walked out, (12:32) got in the car because at that time I still couldn't drive. I was still too sick to actually (12:36) do anything.And I told my husband what happened. And we decided right then and there, (12:43) we were going to move me back to Colorado, like right that second. And so we did.And I got a (12:50) primary care physician because I knew with the insurance here, you can't go see anybody (12:56) until you see your primary care specialist. I can't tell you how frustrating that is. (13:03) So I went to see her and I walked in and I was like, listen, I do not agree with this diagnosis (13:12) at all.I was like, I don't. I don't care what hoops you want me to jump through, (13:17) what testing you want me to do. I will do all of it as long as you give me referrals (13:22) to a dermatologist and another rheumatologist and a GI specialist.(13:28) And she looked at me. She really looked at me. She saw how sick I was.I mean, the fact that I had (13:34) to carry a vomit bag everywhere with me was kind of an indication. And she did. Not a question.(13:41) She got me my referrals. Now it took me nine months to see some of those specialists. Nine
(13:49) months.And so during that time, I was still in that limbo of, well, I'm not getting worse, (13:57) but I'm not getting better and I still can't really do anything. And so I kept working through (14:03) school. We were building our business.I was raising my children. I was thinking I was also (14:09) doing some major damage to our children because they were watching me go through all of this. (14:15) And then I was finally able to see the rheumatologist.But until I could get into (14:20) the other two specialists, there wasn't really much more that she could do. So more waiting. (14:27) And finally I got into the GI specialist before the dermatologist, which was probably a good thing (14:36) because again, this doctor looked at me, saw what was going on and he's like, yeah, (14:40) we need to get some testing done.And one of the first things that they did, and I can't even say (14:47) how gross it is because it grosses me out just thinking about it. I had to do a stool test. (14:53) And if you've ever done one, I don't have to explain anymore.And so, you know, I get that (15:00) all to them and we're waiting to get results back, waiting for the, you know, endoscopy, (15:06) all of that stuff. And I was actually at my stepdaughter's bootcamp graduation (15:14) when I got a call from the GI doctor and they were like, you have to start taking these (15:21) antibiotics. You have C. diff.And it looks like you have had it for a while. So all that weight (15:30) that I had been losing, all those doctors telling me, oh, you're just fat. This is okay.You're just (15:36) losing weight because you're fat was actually because I was dying from my stomach. Yeah,
(15:43) it was actually killing me. So, you know, I took the antibiotics, that all cleared up.(15:50) They continued with their testing and surprise, surprise, my gallbladder was not working. (15:57) Like less than 20%. They're like, this has got to come out.This is probably causing (16:02) a lot of your other issues that's going on. But again, I had to wait, you know, (16:08) it was like another six to eight weeks before I was able to get that surgery. (16:12) Well, during that time, I went to go see the dermatologist because it was finally during that (16:17) time.And I was like, this is what I think I have. I think I have psoriasis. Can we test for this? (16:27) Because by that point, I had tied it all back to the tonsillitis.There is a very rare onset (16:36) of psoriasis called goutate psoriasis that you can get by tonsillitis or strep throat that just (16:45) kind of activates it. And that's exactly what happened. That is exactly what happened.It was (16:49) a chain reaction that set everything off. And so dermatology, we figured it out. And then it was (16:56) still another six months before insurance would approve the medication that would eventually save (17:03) my life.Because it's a biological, it's very expensive. And without insurance, it costs about (17:11) $20,000 a shot. And it is very worth it.But it's unfortunate that it costs that much. So you know, (17:21) I had my gallbladder out. We finally figured out it was psoriasis, psoriatic arthritis.
(17:29) And they have concluded now that I have seven different autoimmune conditions, (17:36) four of which are different types of psoriasis, which was really, really interesting that you (17:42) could have so many types. I never knew that. And I've been on a biological for two years now.And (17:51) I've had minor outbreaks, minor flares, but I am no longer dying. And that is the most important (18:00) thing. Yeah, yeah.Oh, my gosh. Yeah. Let me back up to the beginning too.So when with the cysts (18:08) on your ovaries, were you ever told you had PCOS? Did they ever say that? It was actually (18:16) when we started doing fertility testing. And they told me at the age of, I think I was like 25, (18:24) that I had the ovaries of like a 45 year old woman. And they were like, did you know that (18:29) you had PCOS? And I was like, I knew I had cysts on my ovaries, but I didn't know about any of that, (18:35) which actually explains a whole heck of a lot from when I was younger and even fertility (18:43) struggles after.But yes, they did finally tell me almost in my thirties that I had PCOS.
(18:49) Yeah. I mean, that just speaks a lot there too, because I feel like I hear that so much, (18:55) misdiagnosis, delayed diagnosis.Yeah. I mean, that just, again, that kind of fits in with a (19:04) lot of stuff. And then it is typically diagnosed with fertility issues because same thing, it's (19:11) missed for years or not paid attention to.And then you finally go in because you're trying to (19:16) have children and yeah. And that's when you get diagnosed. So, I mean, obviously you've been (19:24) through a lot.How did the relationship with your body change throughout that whole, (19:33) all your struggles? It changed a lot. There are still times that I have extreme hatred (19:42) towards my body, but then I also think about, oh, the crap that I did when I was younger, (19:50) that did not help with the situation that I'm in now. And that's when I come back to, (19:55) yes, my body is having this reaction now, but what could I have done in the past to maybe (20:02) prevent this or make it less bad? And so we have a much better relationship now.(20:09) I am very thankful that we've been through so much together and that it's carried me through (20:16) so much and that even after all that I've put it through and that it's put itself through, (20:22) that we're still here. Yeah. No, I mean, that's a great point because I've said the same thing (20:28) before on other episodes, you know, where it's like, oh, if I only wish I would have known, (20:33) you know, and all those times like thinking back, you know, like similar to you too, where
(20:38) I was ignoring things, you know, and yeah.And looking back and I'm like, oh my gosh. But at (20:44) the same time too, I feel like if I would have gone to the doctor at that point, I don't think (20:50) I would have gotten a proper diagnosis either. Yeah.So, you know, maybe it's a blessing that (20:57) things happened. I don't even think I'd be here doing all of this, you know, without my journey (21:04) too and probably similar for you. Yeah.Yeah. That is definitely one thing that I say a lot (21:10) and people look at me like I'm crazy when I say it, but I tell them that I had to get sick to (21:17) become the person that I am today because six years ago, Sophia would have never taken the risk (21:25) leaps or anything that today Sophia does. Yeah.I love that. So, I mean, yeah, tying into that (21:35) emotionally, I mean, you know, was there just a point where like you felt like it was your (21:41) breaking point and kind of what, you know, what changed? How did you get past that? (21:48) My breaking point was actually when we moved back to Colorado. That's when really (21:54) my twins had a firsthand seat to the show of what was going on with my body.And when I was having (22:02) those pericardial effusions, I would go to bed every night and I would cry because I was worried (22:09) about not waking up. Now, not the part about dying, but the part about my seven-year-old twins (22:17) coming in and finding me dead is really what my breaking point was. And when that happened,
(22:26) I took a look at my medications, my doctors, my everything, and I'm like, excuse my language, (22:33) but this shit isn't working.And so I told my doctors, we're coming off all of this. It's not (22:38) doing anything. It's making me worse.You're dealing with all the side effects probably (22:42) from, yeah, yeah. And that was really up until that point. Sure.I'd been doing the research. (22:50) I'd been looking at the things, but when I got direct with my doctor and I took accountability (22:57) for my health, that's when things changed. And it was really that catalyst of my kids seeing me that (23:05) I needed.Yeah. Yeah. Yeah.I mean, that's another, you know, again, like I loved having you on, (23:12) it's not super PCOS specific, but it's just a recurring theme throughout so many episodes that (23:18) I do too, is, you know, take, like I said, taking accountability, being your own advocate, (23:22) standing up for yourself because unfortunately, just because somebody is wearing a white coat (23:27) doesn't mean that they know exactly, you know, what's going on in your body and how you're (23:32) feeling in the best way, you know, to handle that. So, you know, you also did a lot of research (23:44) you know, what, like, what was that process like? You know, you, it sounds like you really dug deep, (23:50) you went down some rabbit holes. I did.You know, it started off with first just Google searches
(23:59) and you know, that came back with you're dying. And I was like, no, I'm not. It was right.But (24:05) I was unwilling to accept it at that point in time because, you know, you do a Google search (24:09) for sore throat and all of a sudden you have throat cancer. Right. And so I was trying to take (24:14) everything with a grain of salt until I started getting into some medical research.There were (24:21) some posts on some medical sites that had some information. I was like, okay, you know what, (24:29) that sounds like what this could potentially be. And that's what first linked the strep throat (24:35) tonsillitis to gutate psoriasis is I had access to our school library online.So I could literally (24:46) research anything, anything that I wanted to. And that's what I did. I started researching (24:52) onsets of gutate psoriasis or psoriasis, or how did it start for people? And that's kind of what (25:00) shifted me in the direction of, okay, now I know I have something I'm going to start (25:05) researching more from.I think it was like NHIM or something. I can't remember the acronym, but (25:11) they post a lot of medical research papers and stuff like that. And so that's the kind of stuff (25:19) that I would read through while I was, you know, sitting there on the couch because there wasn't (25:24) anything else for me to do.It became my lifeline in a way to the outside. And so I started compiling (25:33) the research in my phone notes, little bits and pieces of stuff that made sense. And I would cite (25:40) my articles.I know I'm such a nerd, but I wanted to be able to reference them not only for myself, (25:47) because I was having tremendous brain fog with everything that was going on. I just couldn't (25:52) keep coherent thoughts. So when I went to the doctor, I wanted to have undeniable proof.Hey, (25:58) this is where I found this at. Can we maybe go down this avenue? Because it sounds like what I'm (26:04) doing. And that turned out to be like the most helpful thing.Yeah. I mean, that's such a good
(26:11) point, especially because some physicians, you don't have a whole lot of time either, right? (26:15) You know, so you want to make sure like you have it all laid out, you're prepared, you're ready (26:20) to ask the right questions to have a meaningful conversation, you know, maybe in that short (26:25) amount of time that you have with them. Yeah.Now, did you say, did you end up seeing like any (26:30) alternative practitioners or anything? I didn't see any alternative practitioners, but I did. (26:39) I did research again, because the pain that I was feeling, the joint pain from the psoriatic (26:46) arthritis was like really, really deep in my joints. And they had me on like off the chart (26:54) narcotics that should have put a dent into what I was feeling.And when they bumped the prescription (27:02) up yet again, I was kind of like, Whoa, you guys, this isn't even helping. Like, maybe there's (27:09) something else that we could look at. And so I talked to my primary care physician about looking (27:15) into THC and CBD, which I did.I did not like the THC. It made me feel really, really weird. (27:27) But the CBD components, I found this cream that I put on my joints.And I was like, (27:37) you know, it was the best. I was like, where where's my pain? Like it was that penetrating. (27:45) It was so amazing.And that actually encouraged me when I saw physical therapists to have them do a
(27:52) little bit of dry needling as well on some other areas that were inflammation and problematic. (28:00) And so we did go down an alternative medicine path without like the actual alternative medicine path, (28:07) if that makes sense. And it was, to this day, I think that's one of the things that kept me alive (28:14) in between, you know, starting that biological and stopping all that other medication.(28:20) Yeah, yeah. So how do you kind of balance, you know, trusting the medical professionals, (28:28) but also trusting yourself? And maybe even how has that evolved throughout this whole thing? (28:35) It's a short story, I don't trust them anymore. (28:41) It's a, I usually go in with an idea of what I think is wrong.I give them all the information, (28:51) I don't tell them my idea, I let them find that conclusion on their own. And then when they get (28:56) to that conclusion, I'm like, Oh, yeah, I think that sounds good. If they come to a different (29:01) conclusion, it's a, okay, I can see where you've got to that.But also, what about this? I was (29:09) telling you before we started the call earlier about a recent issue that I had where it turns (29:17) out I have a small tear in my esophagus. Well, going into that doctor's appointment, I knew that (29:23) that could be the case. And so when she said that out loud, I wasn't like, Oh, my gosh, no, it was (29:30) okay.That's what I was thinking, too. Let's just move on down the line and see what we need to do (29:36) to treat this. And so that's kind of the shift that I've taken.Yes, I will hear what you have
(29:42) to say. But before I take anything that you give me or take any test, I'm also going to do some (29:48) research on it. Yeah, I love that.Oh, my gosh, I love that. I really hope people are listening to (29:55) that piece. Because yeah, that's very typical.And again, being from my nursing healthcare (30:03) background, I mean, yeah, the doctor tells somebody, okay, you need X, Y, and Z tests. (30:08) And they're just like, okay, or you can take this medication. And they're just like, okay.(30:12) But they're not questioning the effects that it could have on their body and what the ultimate (30:18) goal is, you know, with these tests, especially if it's definitely something a little more (30:24) complicated, you know, like in your case, for sure. I hope today's conversation reminds you (30:31) that healing isn't always about finding one perfect diagnosis or one perfect doctor. (30:36) Sometimes it's about persistence.Sometimes it's about asking one more question, (30:40) getting another opinion, and learning to trust yourself just as much as the experts around you. (30:45) Sophia shared so many incredible takeaways today, but the one that really stuck with me is this. (30:51) Healing is hard, but you get to choose your heart.You can stay stuck in frustration, (30:55) or you can take that next step toward understanding your body and advocating for
(30:59) the care you deserve. Whether you're living with PCOS, autoimmune disease, chronic inflammation, (31:05) or another complex health condition, I hope this episode encourages you to stay curious, (31:10) keep asking questions, and never stop listening to what your body is trying to tell you. (31:14) If you found this episode helpful, I'd love for you to share it with someone who needs to hear it, (31:19) leave a review, and subscribe so we can continue bringing these conversations to more women around (31:23) the world.Thank you so much for listening. I'm sending you so much love, and I'll see (31:27) you on the next episode of PCOS Unfiltered. Nourish.Heal. Thrive.