1 00:00:09,680 --> 00:00:12,680 Speaker 1: I remember having my friends drive me to the er 2 00:00:12,840 --> 00:00:16,119 Speaker 1: once and someone had to carry me into the er 3 00:00:16,200 --> 00:00:17,720 Speaker 1: because I could not even move. 4 00:00:18,440 --> 00:00:22,319 Speaker 2: The severity of the pain is not necessarily correlated with 5 00:00:22,400 --> 00:00:25,160 Speaker 2: the type of disease or like the extent of the disease, 6 00:00:25,320 --> 00:00:27,240 Speaker 2: so then people don't get the support that they need. 7 00:00:27,600 --> 00:00:28,240 Speaker 3: They feel like. 8 00:00:28,200 --> 00:00:29,560 Speaker 2: They're the only one going through it. 9 00:00:30,160 --> 00:00:33,960 Speaker 4: She'd say, I cannot live with these symptoms all the time. 10 00:00:34,159 --> 00:00:38,240 Speaker 4: I just want to live a quote unquote normal life. 11 00:00:38,320 --> 00:00:43,000 Speaker 1: I was at a loss, like I'm looking down and 12 00:00:43,040 --> 00:00:46,479 Speaker 1: I'm seeing red and no one's helping me. 13 00:00:53,400 --> 00:00:57,000 Speaker 3: How terrifying would it be to fight an unknown enemy, 14 00:00:57,520 --> 00:01:01,360 Speaker 3: one you didn't recognize and didn't see coming. What if 15 00:01:01,360 --> 00:01:05,440 Speaker 3: that enemy was coming from within a disease that even 16 00:01:05,560 --> 00:01:11,280 Speaker 3: doctors couldn't identify. Nearly half of all Americans suffer from 17 00:01:11,319 --> 00:01:16,000 Speaker 3: some chronic illness, and many struggle for an accurate diagnosis. 18 00:01:17,080 --> 00:01:23,440 Speaker 3: These are their stories and Lauren brete p Cheko and 19 00:01:23,600 --> 00:01:41,800 Speaker 3: this is symptomatic. Mick naturally radiates energy, joy, and warmth 20 00:01:42,160 --> 00:01:45,559 Speaker 3: with her lively, outdoorsy spirit. She makes everyone she meets 21 00:01:45,600 --> 00:01:48,840 Speaker 3: feel like family. These qualities not only carried her through 22 00:01:48,880 --> 00:01:52,160 Speaker 3: her toughest health challenges, but also help her make a 23 00:01:52,320 --> 00:01:56,360 Speaker 3: real impact in the lives of others. For people who 24 00:01:56,400 --> 00:01:59,200 Speaker 3: don't know you, tell me a little bit about yourself. 25 00:01:59,240 --> 00:02:00,560 Speaker 3: How would you describe yourself. 26 00:02:01,240 --> 00:02:03,640 Speaker 1: I feel like I'm a jack of all trades, but 27 00:02:03,920 --> 00:02:08,560 Speaker 1: mainly I'm a social media creator. I started as a 28 00:02:08,600 --> 00:02:13,240 Speaker 1: fitness coach on Instagram and YouTube, and then I shared 29 00:02:13,280 --> 00:02:17,480 Speaker 1: my eating disorder recovery online, and then I started sharing 30 00:02:17,600 --> 00:02:19,280 Speaker 1: my health issues. 31 00:02:18,880 --> 00:02:21,320 Speaker 5: Online and gained a community from that. 32 00:02:22,000 --> 00:02:24,919 Speaker 3: Well, when you're not doing social media, tell me some 33 00:02:25,000 --> 00:02:27,720 Speaker 3: of your favorite things to relax, and I'm sure they 34 00:02:27,760 --> 00:02:29,200 Speaker 3: may include your dog Blue. 35 00:02:29,520 --> 00:02:32,840 Speaker 1: Oh, yes, they do well. Blue just got surgery. He 36 00:02:33,040 --> 00:02:36,680 Speaker 1: got doggy acl surgery. But usually it would be taking 37 00:02:36,720 --> 00:02:40,120 Speaker 1: him for hikes or like walks and stuff. And I'm 38 00:02:40,160 --> 00:02:44,040 Speaker 1: a big rock collector, fossil collector. My family has a 39 00:02:44,040 --> 00:02:47,920 Speaker 1: house in northern Michigan, and if anybody knows what a 40 00:02:47,919 --> 00:02:50,960 Speaker 1: Potoski stone is, I'm always like polishing them in my 41 00:02:51,000 --> 00:02:55,040 Speaker 1: backyard and showing my nieces and nephews all of the 42 00:02:55,040 --> 00:02:56,080 Speaker 1: cool stuff that I find. 43 00:02:56,720 --> 00:02:59,840 Speaker 3: For people who don't know, Mick, how would you describe 44 00:02:59,840 --> 00:03:00,560 Speaker 3: for to people? 45 00:03:01,240 --> 00:03:05,040 Speaker 4: Oh, gosh, there's six of us siblings, so Mikayla is 46 00:03:05,960 --> 00:03:07,560 Speaker 4: the fifth. 47 00:03:08,280 --> 00:03:10,600 Speaker 3: That's Christine mix older sister. 48 00:03:11,240 --> 00:03:14,040 Speaker 4: She's more on the quiet side since there's so many 49 00:03:14,080 --> 00:03:16,239 Speaker 4: of us, somebody's always trying to talk and over talk 50 00:03:16,360 --> 00:03:21,520 Speaker 4: to each other. She's very thoughtful, she's a very genuine person. 51 00:03:22,320 --> 00:03:23,240 Speaker 4: She's just a gem. 52 00:03:23,360 --> 00:03:24,600 Speaker 5: She's really really special. 53 00:03:25,240 --> 00:03:29,560 Speaker 3: Christine, a nurse practitioner, has always been mixed anchor. As 54 00:03:29,560 --> 00:03:33,520 Speaker 3: an older sibling. She recalls mixed struggling with unusual health 55 00:03:33,560 --> 00:03:37,240 Speaker 3: issues from an early age. Do you remember how early 56 00:03:37,360 --> 00:03:39,960 Speaker 3: now looking back, the staff infection issue started. 57 00:03:40,520 --> 00:03:42,760 Speaker 4: I mean, kids fall all the time, right like they're 58 00:03:42,760 --> 00:03:46,840 Speaker 4: always getting abrasions, knees, palms of their hand. But I 59 00:03:47,120 --> 00:03:50,960 Speaker 4: vividly remember her as a little toddler getting one and 60 00:03:51,480 --> 00:03:53,920 Speaker 4: my parents were like what in the world, and a 61 00:03:54,080 --> 00:03:56,800 Speaker 4: lot of antibiotics. I mean, she'd get poked by like 62 00:03:56,840 --> 00:03:59,360 Speaker 4: a pine needle or something and it would turn into 63 00:03:59,400 --> 00:04:00,760 Speaker 4: a staff infection. 64 00:04:01,440 --> 00:04:04,720 Speaker 3: Health issues that seemed to evolve as Mit grew older. 65 00:04:05,360 --> 00:04:10,880 Speaker 1: I started hitting puberty in elementary school way before a 66 00:04:10,920 --> 00:04:14,720 Speaker 1: lot of people my age did, and my parents kind 67 00:04:14,720 --> 00:04:17,520 Speaker 1: of freaked out and took me to a bunch of doctors. 68 00:04:17,800 --> 00:04:21,120 Speaker 1: So I didn't find that out until probably a few 69 00:04:21,200 --> 00:04:21,680 Speaker 1: years ago. 70 00:04:22,400 --> 00:04:24,760 Speaker 3: That's interesting, And what did they chalk that up to 71 00:04:24,800 --> 00:04:27,760 Speaker 3: the fact that you had so many female siblings that 72 00:04:27,880 --> 00:04:29,400 Speaker 3: sometimes the hormones just sink. 73 00:04:29,920 --> 00:04:32,719 Speaker 1: I don't think they gave my parents any answers, if 74 00:04:32,760 --> 00:04:35,920 Speaker 1: I remember correctly. I think they just chalked it up 75 00:04:35,920 --> 00:04:38,159 Speaker 1: to me hitting puberty early. 76 00:04:39,400 --> 00:04:43,000 Speaker 3: Little signs of mixed health issues appeared early on, but 77 00:04:43,279 --> 00:04:46,679 Speaker 3: it wasn't until she started to menstrate that suspicions began 78 00:04:46,760 --> 00:04:47,200 Speaker 3: to rise. 79 00:04:48,560 --> 00:04:52,039 Speaker 1: I remember my first period was between three weeks and 80 00:04:52,080 --> 00:04:54,240 Speaker 1: five weeks long. I can't remember exactly because I was 81 00:04:54,279 --> 00:04:58,599 Speaker 1: so young, but I asked my mom, and I asked 82 00:04:58,640 --> 00:05:01,040 Speaker 1: my siblings. I was like, is this normal? And they 83 00:05:01,040 --> 00:05:04,359 Speaker 1: were like, yeah, sometimes it happens. My mom had heavy 84 00:05:04,400 --> 00:05:08,880 Speaker 1: periods and she was like, I'm fine. And unfortunately, we've 85 00:05:08,880 --> 00:05:11,240 Speaker 1: been taught that a lot of things are normal that 86 00:05:11,320 --> 00:05:13,400 Speaker 1: aren't at all. 87 00:05:13,480 --> 00:05:17,680 Speaker 3: And so was that difficult now looking back going through 88 00:05:17,680 --> 00:05:18,840 Speaker 3: that at such an early age. 89 00:05:19,920 --> 00:05:26,000 Speaker 1: Yes, because when I hit puberty in elementary school, I 90 00:05:26,040 --> 00:05:29,360 Speaker 1: dealt with a lot of acne and struggles with acne 91 00:05:29,520 --> 00:05:33,880 Speaker 1: very young, and I remember like carrying a pot concealer 92 00:05:34,000 --> 00:05:37,599 Speaker 1: around with me in literal elementary school because I was 93 00:05:37,640 --> 00:05:41,160 Speaker 1: so worried about what people would say, and I even 94 00:05:41,200 --> 00:05:43,760 Speaker 1: wore like swim shirts around whenever I would go to 95 00:05:43,760 --> 00:05:45,920 Speaker 1: the pool because I had acne all over my back 96 00:05:46,000 --> 00:05:47,400 Speaker 1: and chest and arms. 97 00:05:48,000 --> 00:05:52,160 Speaker 3: I hadn't even thought about, of course, the hormonal aspect, 98 00:05:52,200 --> 00:05:54,520 Speaker 3: and if your body's being flooded with that early, you're 99 00:05:54,560 --> 00:05:57,440 Speaker 3: going to manifest what most kids are going to navigate 100 00:05:57,800 --> 00:06:01,520 Speaker 3: in junior high in high school in terms of acne. Yeah, 101 00:06:01,640 --> 00:06:03,200 Speaker 3: that must have been a lot. 102 00:06:03,400 --> 00:06:04,480 Speaker 5: It was, for sure. 103 00:06:05,120 --> 00:06:09,920 Speaker 4: She was on medications for the acne, and again she 104 00:06:10,040 --> 00:06:13,480 Speaker 4: was young. You don't go searching for other problems at 105 00:06:13,480 --> 00:06:17,000 Speaker 4: that time because the majority of your peers are also 106 00:06:17,200 --> 00:06:20,920 Speaker 4: going through that. Hers was just taken to the next level. 107 00:06:21,760 --> 00:06:25,120 Speaker 3: And so the symptoms persisted. Now in high school and 108 00:06:25,279 --> 00:06:28,799 Speaker 3: a standout on the soccer team, mixed minstrel cycle began 109 00:06:28,880 --> 00:06:30,599 Speaker 3: to disrupt her everyday life. 110 00:06:31,680 --> 00:06:34,920 Speaker 1: I remember being in the middle of a game and 111 00:06:34,960 --> 00:06:38,440 Speaker 1: having to run off the field to change my super 112 00:06:38,520 --> 00:06:42,400 Speaker 1: plus tampon. Like I had to change these tampons at 113 00:06:42,480 --> 00:06:43,520 Speaker 1: least three times an hour. 114 00:06:43,640 --> 00:06:44,800 Speaker 5: It was so heavy. 115 00:06:45,400 --> 00:06:48,440 Speaker 4: She is an incredible athlete. She had to retire from 116 00:06:48,480 --> 00:06:52,200 Speaker 4: her soccer career pretty early. Earlier than she wanted, because 117 00:06:52,680 --> 00:06:55,840 Speaker 4: she blew her knee out several times and had some 118 00:06:55,920 --> 00:06:59,400 Speaker 4: major surgeries on the knee and then ended up getting concussions. 119 00:07:01,320 --> 00:07:05,799 Speaker 3: So now, on top of the symptoms piling up, your 120 00:07:05,920 --> 00:07:09,000 Speaker 3: body must have been sent through a spiral going from 121 00:07:09,000 --> 00:07:12,720 Speaker 3: all that time playing soccer to now not having it 122 00:07:12,760 --> 00:07:13,720 Speaker 3: at all. 123 00:07:13,760 --> 00:07:17,360 Speaker 1: I was really confused because I was so athletic, and 124 00:07:17,400 --> 00:07:19,480 Speaker 1: then all of a sudden, I didn't even know how 125 00:07:19,480 --> 00:07:22,320 Speaker 1: to work out, and I didn't know how to do anything. 126 00:07:22,360 --> 00:07:26,640 Speaker 1: I didn't know how to eat, I couldn't really socialize. 127 00:07:26,680 --> 00:07:28,400 Speaker 1: It was hard for me to put myself out there 128 00:07:28,520 --> 00:07:31,360 Speaker 1: because all of my friends and my whole entire life 129 00:07:31,400 --> 00:07:37,800 Speaker 1: surrounded soccer, and so I essentially had to step into 130 00:07:38,040 --> 00:07:43,160 Speaker 1: this very unfamiliar life that I did not know how 131 00:07:43,200 --> 00:07:44,120 Speaker 1: to live at all. 132 00:07:45,000 --> 00:07:48,600 Speaker 3: Over time, Mick started to feel lost in her own body, 133 00:07:48,960 --> 00:07:52,520 Speaker 3: turning to fad diets and facing the pressures that often 134 00:07:52,640 --> 00:07:53,400 Speaker 3: accompany them. 135 00:07:54,560 --> 00:07:57,400 Speaker 1: My parents thought it would be good for me to 136 00:07:57,480 --> 00:08:04,200 Speaker 1: dive head into something that would take discipline, because I 137 00:08:04,320 --> 00:08:08,480 Speaker 1: was an athlete, like I loved having something to put 138 00:08:08,480 --> 00:08:13,080 Speaker 1: my energy into and to see progress in. And that's 139 00:08:13,240 --> 00:08:16,200 Speaker 1: exactly what I did, except it took. 140 00:08:16,080 --> 00:08:18,400 Speaker 5: A very wrong turn. 141 00:08:18,840 --> 00:08:22,200 Speaker 1: I was turning seventeen at the time, and I was 142 00:08:22,880 --> 00:08:27,280 Speaker 1: following a diet that was having me eat less than 143 00:08:27,280 --> 00:08:28,720 Speaker 1: a toddler should be eating. 144 00:08:29,720 --> 00:08:32,920 Speaker 3: Mick was developing an eating disorder that would soon consume 145 00:08:33,000 --> 00:08:36,840 Speaker 3: her life, adding to the stress from the mysterious undiagnosed 146 00:08:36,880 --> 00:08:41,800 Speaker 3: illness that continued to linger in the background. How did 147 00:08:41,880 --> 00:08:46,040 Speaker 3: your symptoms then progress to the point where you realized 148 00:08:46,160 --> 00:08:49,520 Speaker 3: that you needed to seek medical opinion. 149 00:08:50,240 --> 00:08:56,920 Speaker 1: Well, my acne got exponentially worse, and I also started 150 00:08:56,960 --> 00:09:03,160 Speaker 1: getting UTIs right after my big life shift. I also 151 00:09:03,400 --> 00:09:07,319 Speaker 1: remember getting a happy trail on my lower stomach and 152 00:09:07,679 --> 00:09:10,760 Speaker 1: getting some hairs on my chest, in my chin and 153 00:09:11,240 --> 00:09:16,120 Speaker 1: in the mustache area, and my sisters also dealt with 154 00:09:16,160 --> 00:09:17,120 Speaker 1: that to some extent. 155 00:09:17,200 --> 00:09:19,200 Speaker 5: So I was like, Okay, Like, I guess I'm just 156 00:09:19,240 --> 00:09:20,040 Speaker 5: going to keep going. 157 00:09:20,240 --> 00:09:24,120 Speaker 3: That is just the genetic Yeah, you know card you 158 00:09:24,160 --> 00:09:24,680 Speaker 3: were dealt. 159 00:09:25,240 --> 00:09:28,440 Speaker 1: Yeah, And so I kind of lived in that cycle 160 00:09:28,520 --> 00:09:33,120 Speaker 1: for a fairly long time, being on antibiotics for acne, 161 00:09:33,640 --> 00:09:37,360 Speaker 1: trying different birth controls because I was starting to get 162 00:09:37,400 --> 00:09:42,240 Speaker 1: sexually active, so I was actually suppressing my period around 163 00:09:42,240 --> 00:09:46,480 Speaker 1: that time as well, and I was shaving all of 164 00:09:46,480 --> 00:09:50,080 Speaker 1: the hair that wasn't normal for a girl to have 165 00:09:50,559 --> 00:09:53,440 Speaker 1: in you know, social society standards. 166 00:09:54,240 --> 00:09:58,080 Speaker 3: How did your UTIs progress to the point where they 167 00:09:58,120 --> 00:09:59,960 Speaker 3: became emergency situation? 168 00:10:01,240 --> 00:10:07,080 Speaker 1: Honestly, they were always emergency situations. It hit me so badly. 169 00:10:07,480 --> 00:10:08,120 Speaker 5: I would be. 170 00:10:08,200 --> 00:10:11,120 Speaker 1: Fine one minute and then I wouldn't be able to 171 00:10:11,160 --> 00:10:13,520 Speaker 1: walk the next. So I actually went to the emergency 172 00:10:13,600 --> 00:10:17,679 Speaker 1: room quite a bit. I remember I was sitting in 173 00:10:17,720 --> 00:10:23,160 Speaker 1: my bedroom at my house and I was watching TV, 174 00:10:23,520 --> 00:10:26,840 Speaker 1: and it hit me so fast, and I told my 175 00:10:27,040 --> 00:10:30,360 Speaker 1: parents and they were like, oh, yeah, like it'll go 176 00:10:30,440 --> 00:10:33,480 Speaker 1: away on its own, you know, like Grandberry juice. Yes, 177 00:10:33,559 --> 00:10:35,880 Speaker 1: this stuff happens all the time. And so I after 178 00:10:35,960 --> 00:10:40,560 Speaker 1: about an hour. My first emergency room visit was me 179 00:10:40,760 --> 00:10:41,800 Speaker 1: driving myself there. 180 00:10:42,400 --> 00:10:44,440 Speaker 4: So then she just kind of ignores it because she's 181 00:10:44,480 --> 00:10:46,040 Speaker 4: just like, well, this has to be my norm. I 182 00:10:46,040 --> 00:10:48,640 Speaker 4: guess I'm just going to live with bladder pain and 183 00:10:48,800 --> 00:10:50,360 Speaker 4: puts it off, puts it off, and then it just 184 00:10:50,440 --> 00:10:52,120 Speaker 4: gets worse, and that's when she has to go to 185 00:10:52,160 --> 00:10:54,480 Speaker 4: the emergency room because she's like, well, this is terrible, 186 00:10:54,960 --> 00:10:55,640 Speaker 4: so painful. 187 00:10:56,520 --> 00:11:01,760 Speaker 1: That's why they immediately gave me antibiotics every single time, 188 00:11:01,880 --> 00:11:06,080 Speaker 1: without even doing a culture test because my symptoms were 189 00:11:06,120 --> 00:11:10,120 Speaker 1: so severe, I was either urinating blood or like I 190 00:11:10,240 --> 00:11:11,760 Speaker 1: was screaming in pain. 191 00:11:11,840 --> 00:11:16,840 Speaker 3: It was so painful for somebody who can't understand or 192 00:11:16,920 --> 00:11:21,439 Speaker 3: hasn't experienced. Can you just explain in as much detail 193 00:11:21,440 --> 00:11:23,600 Speaker 3: as possible what that pain felt like? 194 00:11:24,720 --> 00:11:25,520 Speaker 5: Oh? 195 00:11:25,720 --> 00:11:30,200 Speaker 1: How do I explain the most excruciating pain? I mean, 196 00:11:30,280 --> 00:11:33,840 Speaker 1: you can't think. You can't walk. It feels like knives 197 00:11:33,840 --> 00:11:36,560 Speaker 1: are coming out of you. When you're peeing. It feels 198 00:11:36,640 --> 00:11:42,320 Speaker 1: like you have nothing else to pee, but you have to, 199 00:11:42,640 --> 00:11:47,440 Speaker 1: and your body needs to. And your body is so swollen. 200 00:11:47,720 --> 00:11:52,520 Speaker 1: Your lower abdomen is so swollen it feels like stabs. 201 00:11:52,640 --> 00:11:53,360 Speaker 5: It really does. 202 00:11:56,120 --> 00:11:59,600 Speaker 3: By now, Nick is twenty and four years into a 203 00:11:59,640 --> 00:12:03,160 Speaker 3: more search for answers, finding herself in and out of 204 00:12:03,200 --> 00:12:08,000 Speaker 3: the er as her symptoms continuously flared. She started seeing specialists, 205 00:12:08,160 --> 00:12:11,480 Speaker 3: hoping for the relief she needed, but no one could 206 00:12:11,480 --> 00:12:14,559 Speaker 3: seem to uncover the real root of the problem. 207 00:12:15,080 --> 00:12:20,720 Speaker 1: And by that time, my bladder issues started to get 208 00:12:20,960 --> 00:12:22,160 Speaker 1: exponentially worse. 209 00:12:23,080 --> 00:12:24,240 Speaker 5: I was unable to walk. 210 00:12:24,320 --> 00:12:27,319 Speaker 1: I remember having my friends drive me to the er 211 00:12:27,480 --> 00:12:31,000 Speaker 1: once and someone had to carry me into the er 212 00:12:31,040 --> 00:12:32,760 Speaker 1: because I could not even move. 213 00:12:33,440 --> 00:12:35,400 Speaker 3: What are you being told it could. 214 00:12:35,120 --> 00:12:38,959 Speaker 1: Be PCOS and inner social cystitis. 215 00:12:39,760 --> 00:12:45,400 Speaker 3: Okay, so polycystic ovarian syndrome, And what are you being 216 00:12:45,520 --> 00:12:46,559 Speaker 3: told to do? 217 00:12:47,400 --> 00:12:52,400 Speaker 1: Girth control and elimination, diet and bladder medication. 218 00:12:53,200 --> 00:12:56,520 Speaker 3: But I just find something heartbreaking, Mick about the fact 219 00:12:56,559 --> 00:13:02,400 Speaker 3: that when you went to your gynecologist to on contraceptives, 220 00:13:03,000 --> 00:13:08,640 Speaker 3: you didn't talk about the hair and the cycle issues, 221 00:13:09,640 --> 00:13:12,560 Speaker 3: and then you go to an intercrinologist and you're not 222 00:13:12,760 --> 00:13:16,160 Speaker 3: talking about the gynecological issues. 223 00:13:17,160 --> 00:13:19,160 Speaker 1: I think a lot of it has to do with 224 00:13:19,559 --> 00:13:24,920 Speaker 1: being self conscious and overwhelmed, because at this time I 225 00:13:25,000 --> 00:13:27,800 Speaker 1: was starting to gain my independence. I was in college 226 00:13:28,240 --> 00:13:32,640 Speaker 1: and I was going to these appointments alone. I remember 227 00:13:32,679 --> 00:13:35,080 Speaker 1: being so nervous, to the point where I would leave 228 00:13:35,120 --> 00:13:37,640 Speaker 1: appointments and kind of forget something. But then I would 229 00:13:37,640 --> 00:13:40,000 Speaker 1: be like, oh, you know, like it's fine, it doesn't matter. 230 00:13:40,640 --> 00:13:42,840 Speaker 3: So you know that something's wrong, you just don't know 231 00:13:42,880 --> 00:13:46,400 Speaker 3: how to advocate or articulate your issues. 232 00:13:46,960 --> 00:13:50,320 Speaker 1: Yes, it kind of just felt like I was in 233 00:13:50,360 --> 00:13:54,280 Speaker 1: and out of those doctor's appointments. But after every doctor appointment, 234 00:13:54,280 --> 00:13:56,479 Speaker 1: I would kind of leave with some sort of confidence 235 00:13:56,520 --> 00:14:00,440 Speaker 1: that like, it wasn't as bad as I thought it was. 236 00:14:02,400 --> 00:14:07,560 Speaker 3: With possible PCOS and interstitial cystiitis diagnosis already on the table, 237 00:14:08,080 --> 00:14:12,440 Speaker 3: Mick visits a gastro entrologist who notes her bladder frequency 238 00:14:12,559 --> 00:14:17,360 Speaker 3: and pain, ultimately diagnosing her with IBS, a label often 239 00:14:17,400 --> 00:14:20,040 Speaker 3: given when no other clear cause for a GI issue 240 00:14:20,040 --> 00:14:23,640 Speaker 3: was found. Meanwhile, as her symptoms piled up and she 241 00:14:23,760 --> 00:14:27,960 Speaker 3: transitioned into college life away from home, Mick began sharing 242 00:14:28,000 --> 00:14:32,080 Speaker 3: her fitness and diet routines online, quickly gaining a following 243 00:14:32,280 --> 00:14:36,320 Speaker 3: and praise for her physical appearance. What her followers didn't 244 00:14:36,400 --> 00:14:38,840 Speaker 3: know was that she was also in the grip of 245 00:14:38,880 --> 00:14:42,800 Speaker 3: an eating disorder, and their comments only fueled that struggle. 246 00:14:43,760 --> 00:14:47,760 Speaker 3: And so you're navigating things that are affirming your negative 247 00:14:48,680 --> 00:14:49,400 Speaker 3: sense of self. 248 00:14:50,200 --> 00:14:53,720 Speaker 1: Yes, And that was when social media had just started 249 00:14:53,960 --> 00:14:58,040 Speaker 1: to blow up, So it was literally the perfect storm 250 00:14:58,120 --> 00:15:02,040 Speaker 1: for everything wrong to happen. I started posting online and 251 00:15:02,240 --> 00:15:07,920 Speaker 1: gaining positive feedback, and on the inside I felt so 252 00:15:08,840 --> 00:15:14,400 Speaker 1: lost and confused, and all I could do was follow 253 00:15:14,560 --> 00:15:16,840 Speaker 1: the positive feedback that I was getting. 254 00:15:17,520 --> 00:15:20,680 Speaker 3: I mean, you're going through all of this at such 255 00:15:20,720 --> 00:15:26,040 Speaker 3: a young age. You said that just managing your UTIs 256 00:15:26,080 --> 00:15:29,720 Speaker 3: alone felt like a full time job. You must have 257 00:15:29,800 --> 00:15:36,720 Speaker 3: been so psychologically not just exhausted, but detached from yourself. 258 00:15:37,880 --> 00:15:38,160 Speaker 5: Yes. 259 00:15:38,720 --> 00:15:43,800 Speaker 1: And I was so focused on trying to make myself 260 00:15:44,120 --> 00:15:50,280 Speaker 1: smaller that I wasn't focused on the pain of my body. 261 00:15:50,560 --> 00:15:55,200 Speaker 1: I wasn't focusing on my digestion. I was focusing on 262 00:15:55,440 --> 00:15:58,520 Speaker 1: limiting my calories, going to the gym for hours a day, 263 00:15:58,600 --> 00:15:59,320 Speaker 1: twice a day. 264 00:16:00,120 --> 00:16:03,040 Speaker 5: But at this point in time. 265 00:16:03,800 --> 00:16:09,560 Speaker 1: I also noticed my body swelling to an amount that was. 266 00:16:09,600 --> 00:16:12,640 Speaker 3: Not normal in what way and how. 267 00:16:13,200 --> 00:16:15,600 Speaker 1: So this is interesting because at the time I was 268 00:16:15,640 --> 00:16:19,160 Speaker 1: dealing with binge eating disorder. So in high school, when 269 00:16:19,200 --> 00:16:23,080 Speaker 1: all of these things started happening, I had orthorexia and 270 00:16:23,120 --> 00:16:26,320 Speaker 1: then it kind of went into bolimia and then binge 271 00:16:26,320 --> 00:16:27,200 Speaker 1: eating disorder. 272 00:16:27,760 --> 00:16:30,960 Speaker 3: Okay, so you have a triple threat in terms of 273 00:16:31,080 --> 00:16:34,000 Speaker 3: eating disorders. Yeah, and I just want to break it down. 274 00:16:34,200 --> 00:16:38,080 Speaker 3: So orthorexia, for people who aren't familiar, it's when you 275 00:16:38,560 --> 00:16:43,280 Speaker 3: become almost not just addicted, but imprisoned by clean eating 276 00:16:43,920 --> 00:16:49,640 Speaker 3: and you cannot deviate outside of that without In your case, 277 00:16:49,640 --> 00:16:50,960 Speaker 3: it triggered bolimia. 278 00:16:51,240 --> 00:16:53,960 Speaker 1: Yeah, and then I thought I could just cure that 279 00:16:54,200 --> 00:16:58,200 Speaker 1: without going to see somebody, And I was like, Okay, 280 00:16:58,200 --> 00:17:01,640 Speaker 1: I'm just going to stop purging, and that led to 281 00:17:02,000 --> 00:17:07,120 Speaker 1: binge eating disorder, and so I chalked the swelling up 282 00:17:07,160 --> 00:17:08,359 Speaker 1: to binge eating. 283 00:17:10,160 --> 00:17:14,160 Speaker 3: Feeling consumed by her eating disorder, Nick stepped away from 284 00:17:14,200 --> 00:17:18,360 Speaker 3: college and entered an outpatient recovery program, pushing her other 285 00:17:18,440 --> 00:17:22,879 Speaker 3: symptoms aside. But once in recovery, she was finally able 286 00:17:22,880 --> 00:17:26,680 Speaker 3: to address the underlying issues that had been affecting her 287 00:17:26,840 --> 00:17:27,800 Speaker 3: since childhood. 288 00:17:28,920 --> 00:17:33,200 Speaker 4: She was in recovery from her eating disorders, and then 289 00:17:33,400 --> 00:17:38,400 Speaker 4: she started to realize that, oh, I'm having worsening cramps. 290 00:17:39,440 --> 00:17:42,920 Speaker 4: Then her PMS symptoms really escalated. 291 00:17:44,200 --> 00:17:47,640 Speaker 3: Tell me about the team and they start pointing things out. 292 00:17:48,520 --> 00:17:52,400 Speaker 1: Yeah. I was mainly my dietitian who started to point 293 00:17:52,440 --> 00:18:00,240 Speaker 1: things out because she noticed my inflammation was way worse 294 00:18:00,359 --> 00:18:04,560 Speaker 1: than what she was expecting. So she had brought that up, 295 00:18:04,800 --> 00:18:08,440 Speaker 1: and the symptoms just kept getting worse. In what way, 296 00:18:09,040 --> 00:18:14,200 Speaker 1: I was urinating blood frequently, My lower stomach would cramp 297 00:18:14,320 --> 00:18:19,600 Speaker 1: a lot, and the frequency of urination was around six 298 00:18:19,600 --> 00:18:23,360 Speaker 1: to eight times per hour at its worst. 299 00:18:25,000 --> 00:18:27,199 Speaker 3: This is when Nick began opening up to her family 300 00:18:27,280 --> 00:18:30,600 Speaker 3: about what she was really going through, struggling to cope 301 00:18:30,600 --> 00:18:34,520 Speaker 3: with the relentless nature of her evolving condition. With her 302 00:18:34,600 --> 00:18:38,560 Speaker 3: eating disorder finally under some control, the real impact of 303 00:18:38,600 --> 00:18:44,399 Speaker 3: her other symptoms started coming into sharp and alarming focus, her. 304 00:18:44,400 --> 00:18:48,639 Speaker 4: Telling me I cannot live with these symptoms all the time. 305 00:18:49,000 --> 00:18:54,200 Speaker 4: This can't be my new normal. Just seeing her so frustrated, 306 00:18:54,840 --> 00:19:00,200 Speaker 4: she'd say, these are debilitating. I just want to live 307 00:19:00,200 --> 00:19:03,400 Speaker 4: a quote unquote normal life. It was just the constant 308 00:19:03,720 --> 00:19:07,159 Speaker 4: calls that she would give me. I was like, Okay, 309 00:19:07,240 --> 00:19:11,240 Speaker 4: we need to sit down and have some real conversations. 310 00:19:11,920 --> 00:19:15,840 Speaker 1: That is when my fitness Instagram started to blow up too. 311 00:19:16,200 --> 00:19:21,760 Speaker 1: So I was gaining weight while I was dieting, and 312 00:19:21,840 --> 00:19:25,320 Speaker 1: so I was photoshopping my photos. I was trying to 313 00:19:25,359 --> 00:19:30,960 Speaker 1: portray this perfect lifestyle that obviously wasn't a reflection of 314 00:19:31,000 --> 00:19:35,200 Speaker 1: what was going on in my actual life. And that's 315 00:19:35,240 --> 00:19:38,440 Speaker 1: when I decided to move home for recovery. 316 00:19:39,200 --> 00:19:42,800 Speaker 5: It was the lowest of lows. I wouldn't wish that 317 00:19:42,880 --> 00:19:43,520 Speaker 5: on anybody. 318 00:19:45,520 --> 00:19:49,359 Speaker 3: We'll be right back with Symptomatic, a Medical Mystery Podcast. 319 00:19:52,720 --> 00:20:02,160 Speaker 3: Now back to Symptomatic a Medical Mystery Podcast. Mixed symptoms 320 00:20:02,200 --> 00:20:06,400 Speaker 3: started in her teens, with acne and early periods escalating 321 00:20:06,400 --> 00:20:12,280 Speaker 3: into constant UTIs, bladder pain and even bloody urination. Unsure 322 00:20:12,320 --> 00:20:16,119 Speaker 3: of how to advocate for herself, each symptom was treated separately, 323 00:20:16,720 --> 00:20:20,560 Speaker 3: never seeing the bigger picture. Though she gained some clarity 324 00:20:20,640 --> 00:20:24,520 Speaker 3: through her eating disorder recovery, the struggle wasn't over. She 325 00:20:24,680 --> 00:20:27,880 Speaker 3: was still making frequent trips to the er, but when 326 00:20:27,920 --> 00:20:31,000 Speaker 3: the pain became too much to bear, Mick was more 327 00:20:31,080 --> 00:20:44,320 Speaker 3: determined than ever to find answers. So what was happening 328 00:20:44,359 --> 00:20:47,600 Speaker 3: with you mentally emotionally at this point? 329 00:20:48,200 --> 00:20:52,560 Speaker 1: Emotionally, I mean no one would help me, Like at 330 00:20:52,600 --> 00:20:57,600 Speaker 1: the emergency rooms. I was also getting handed drug addiction 331 00:20:57,720 --> 00:21:02,800 Speaker 1: pamphlets because I was going so often, and I was 332 00:21:03,280 --> 00:21:08,000 Speaker 1: at a loss, like, am I really just making this up? 333 00:21:08,240 --> 00:21:11,240 Speaker 1: I'm looking down in the toilet and I'm seeing red, 334 00:21:11,800 --> 00:21:16,080 Speaker 1: and all of my blood tests are perfectly fine, all 335 00:21:16,160 --> 00:21:20,159 Speaker 1: my CT scans are perfectly fine. I remember one er 336 00:21:20,280 --> 00:21:24,920 Speaker 1: doctor also said like, hmmm, are you constipated? It looks 337 00:21:24,960 --> 00:21:27,680 Speaker 1: like there's a bit of stool build up in there, 338 00:21:27,680 --> 00:21:29,680 Speaker 1: and I was like, I'm constipated all the time. 339 00:21:30,520 --> 00:21:34,720 Speaker 3: And that's when your sister Christine stepped in. How did 340 00:21:34,760 --> 00:21:38,080 Speaker 3: her expertise as a nurse end up coming into play? 341 00:21:38,240 --> 00:21:41,840 Speaker 1: So I called her bawling my eyes out, and I 342 00:21:41,920 --> 00:21:44,040 Speaker 1: think she was an er nurse at the time, and 343 00:21:44,080 --> 00:21:46,960 Speaker 1: I was like, Christy, I am at my breaking point 344 00:21:47,040 --> 00:21:49,960 Speaker 1: right now. I'm in so much pain. I cannot live 345 00:21:50,080 --> 00:21:53,080 Speaker 1: like this. Is there anyone that you can recommend me 346 00:21:53,160 --> 00:21:56,240 Speaker 1: to because I need to see someone fast. I need 347 00:21:56,240 --> 00:21:58,600 Speaker 1: to see someone that will actually treat me and look 348 00:21:58,640 --> 00:22:02,720 Speaker 1: at my issues. And she got me set up with 349 00:22:02,960 --> 00:22:04,200 Speaker 1: another urologist. 350 00:22:04,960 --> 00:22:06,879 Speaker 4: I just want her to note that she's not alone 351 00:22:06,920 --> 00:22:10,520 Speaker 4: through this. I mean, she's physically going through the symptoms, 352 00:22:10,600 --> 00:22:13,960 Speaker 4: but she's not alone. And I think that's really important 353 00:22:13,960 --> 00:22:17,000 Speaker 4: for people with chronic illness to remember that they have 354 00:22:17,119 --> 00:22:19,840 Speaker 4: that support system or to find that support system, because 355 00:22:20,600 --> 00:22:22,359 Speaker 4: you can certainly get in your head. 356 00:22:25,240 --> 00:22:28,679 Speaker 1: She was going to every doctor's appointment with me at 357 00:22:28,680 --> 00:22:31,240 Speaker 1: that point because I was scared that I was going 358 00:22:31,240 --> 00:22:33,200 Speaker 1: to miss something, and she was like, I don't want 359 00:22:33,240 --> 00:22:37,080 Speaker 1: to miss anything. I want to help you move through 360 00:22:37,119 --> 00:22:42,680 Speaker 1: this because you shouldn't be alone. And I can't explain 361 00:22:42,920 --> 00:22:49,240 Speaker 1: how helpful it was, regardless of her nurse practitioning degree, 362 00:22:50,040 --> 00:22:54,600 Speaker 1: just having someone there that I could speak to because 363 00:22:54,600 --> 00:22:57,639 Speaker 1: I was getting thrown medical terms left and right, and 364 00:22:57,680 --> 00:23:01,320 Speaker 1: she was able to actually understand them. When I didn't, 365 00:23:01,840 --> 00:23:06,359 Speaker 1: or if I wasn't able to ask what that was, 366 00:23:06,600 --> 00:23:09,840 Speaker 1: she was able to explain it to me afterwards. 367 00:23:10,280 --> 00:23:13,679 Speaker 4: She would always tell me something is wrong, and I 368 00:23:13,680 --> 00:23:16,119 Speaker 4: think you have to really trust your gut, and she 369 00:23:16,280 --> 00:23:20,359 Speaker 4: was really trusting her gut, like this cannot be just 370 00:23:20,600 --> 00:23:26,360 Speaker 4: a UTI or just a IBS symptom. And I always 371 00:23:26,400 --> 00:23:29,639 Speaker 4: tell her, I say, Mick, you have to be an 372 00:23:29,720 --> 00:23:34,680 Speaker 4: advocate for yourself with your health. Providers know you as 373 00:23:34,880 --> 00:23:38,560 Speaker 4: the next patient. They don't know what you've been through 374 00:23:39,320 --> 00:23:43,280 Speaker 4: with your whole staff infections. UTIs whatever. You have to 375 00:23:43,320 --> 00:23:45,840 Speaker 4: tell the provider all that information for them to take 376 00:23:46,200 --> 00:23:47,399 Speaker 4: everything into consideration. 377 00:23:48,480 --> 00:23:52,120 Speaker 3: Finally hearing her full story, the urologists thought he might 378 00:23:52,240 --> 00:23:56,240 Speaker 3: know what was wrong and started with a sistoscopy, essentially 379 00:23:56,280 --> 00:23:59,400 Speaker 3: putting a camera into mixed bladder to get a clearer view. 380 00:24:00,080 --> 00:24:04,280 Speaker 3: But even with this high tech test, nothing unusual showed up, 381 00:24:04,640 --> 00:24:09,560 Speaker 3: leaving Mick feeling discouraged once again. Some medications offered temporary relief, 382 00:24:09,960 --> 00:24:17,560 Speaker 3: but nothing lasted. You were actually diligently pursuing answers to 383 00:24:17,640 --> 00:24:21,160 Speaker 3: something that has been going on for five six years 384 00:24:21,600 --> 00:24:25,720 Speaker 3: at this point, and one set of doctors in the 385 00:24:26,080 --> 00:24:31,120 Speaker 3: er telling you we can't help you. Go elsewhere, and 386 00:24:31,160 --> 00:24:36,160 Speaker 3: now an expert is telling you not finding anything. Where 387 00:24:36,160 --> 00:24:37,040 Speaker 3: do you go from there? 388 00:24:37,880 --> 00:24:42,399 Speaker 1: Birth control, bladder medication, and elimination. 389 00:24:42,000 --> 00:24:45,600 Speaker 3: Diet, eliminate what at this point I know? 390 00:24:46,000 --> 00:24:52,280 Speaker 1: So I stopped drinking anything but water, no acidic fruits. 391 00:24:52,440 --> 00:24:55,480 Speaker 1: I was scared to eat any fruit except for bananas, 392 00:24:55,800 --> 00:25:01,119 Speaker 1: any spicy foods. They tried to make me stop eating 393 00:25:01,160 --> 00:25:04,679 Speaker 1: gluten and dairy, but I was not in the mental 394 00:25:05,160 --> 00:25:08,439 Speaker 1: state to do that yet with my recovery, and so 395 00:25:09,080 --> 00:25:12,680 Speaker 1: I was basically eating bland food and water every single day. 396 00:25:13,000 --> 00:25:16,080 Speaker 1: I avoided everything because I was so scared. I was terrified. 397 00:25:16,840 --> 00:25:19,399 Speaker 3: You're feeling probably at your worst, and what kind of 398 00:25:19,560 --> 00:25:20,760 Speaker 3: response are you getting. 399 00:25:21,840 --> 00:25:24,000 Speaker 1: I was at the height of my social media career 400 00:25:24,600 --> 00:25:33,160 Speaker 1: and I was slowly deteriorating. I hadn't really opened up 401 00:25:33,560 --> 00:25:37,280 Speaker 1: at all at that point online, but I just had 402 00:25:37,320 --> 00:25:40,600 Speaker 1: all of these business opportunities coming at me left and right, 403 00:25:40,640 --> 00:25:42,359 Speaker 1: and a lot of them I couldn't say no to 404 00:25:42,640 --> 00:25:46,680 Speaker 1: because I was growing my own business. 405 00:25:47,760 --> 00:25:51,199 Speaker 3: Okay, in two to three years, you just powered on 406 00:25:52,200 --> 00:25:57,600 Speaker 3: because from the outside world everything looked great. So what 407 00:25:57,800 --> 00:25:58,840 Speaker 3: is the turning point? 408 00:25:59,880 --> 00:26:05,119 Speaker 1: Began sharing a smidge about what I was going through 409 00:26:05,720 --> 00:26:09,560 Speaker 1: to my Instagram. I don't know if there was an 410 00:26:09,560 --> 00:26:14,080 Speaker 1: exact moment, but my doctor's appointments became so frequent that 411 00:26:14,600 --> 00:26:19,120 Speaker 1: it was a second job, you know. People started dming 412 00:26:19,160 --> 00:26:22,320 Speaker 1: me things like, oh, yeah, I have frequent UTIs and like, 413 00:26:23,040 --> 00:26:27,320 Speaker 1: I have inters social cistiitis, And it started conversations that 414 00:26:27,400 --> 00:26:28,879 Speaker 1: were really really important for me. 415 00:26:29,680 --> 00:26:33,080 Speaker 3: That's amazing. So once you finally kind of let down 416 00:26:33,119 --> 00:26:35,800 Speaker 3: a little bit of your guard, you had a very 417 00:26:35,880 --> 00:26:41,359 Speaker 3: authentic exchange from people who had weathered similar experiences. And 418 00:26:41,400 --> 00:26:44,679 Speaker 3: then you come across Bendy Erwin's story. 419 00:26:45,680 --> 00:26:48,879 Speaker 1: Yeah, one of those conversations ended with someone sending me 420 00:26:48,920 --> 00:26:51,560 Speaker 1: a link to Bendy Irwin's YouTube video. 421 00:26:52,480 --> 00:26:55,440 Speaker 3: Bendy Irwin follows in the footsteps of her famous father, 422 00:26:55,680 --> 00:26:59,840 Speaker 3: Steve Irwin, as a conservationist and zoo keeper. She has 423 00:27:00,119 --> 00:27:03,359 Speaker 3: also been very open about her own health struggles. 424 00:27:04,000 --> 00:27:06,560 Speaker 1: It was ten minutes long, and all they said was, 425 00:27:07,200 --> 00:27:09,720 Speaker 1: I think you need to watch this. Maybe it will 426 00:27:09,720 --> 00:27:12,000 Speaker 1: give you some answers, and I hope it does. And 427 00:27:12,119 --> 00:27:14,640 Speaker 1: I was laying in bed. I watched the full thing 428 00:27:14,800 --> 00:27:18,320 Speaker 1: and my jaw was on the floor. I remember feeling 429 00:27:19,119 --> 00:27:23,520 Speaker 1: so overwhelmed with emotion to the point where like I 430 00:27:23,600 --> 00:27:27,879 Speaker 1: might cry here because I was like, I've never heard 431 00:27:28,000 --> 00:27:31,280 Speaker 1: anybody go through what I had gone through, and it 432 00:27:31,359 --> 00:27:33,000 Speaker 1: was so emotionally overwhelming for me. 433 00:27:35,840 --> 00:27:40,520 Speaker 3: Some of her followers sent Mick additional resources and recommended doctors, 434 00:27:40,960 --> 00:27:45,439 Speaker 3: one being doctor Shivacomini som Asunderum more fondly known as 435 00:27:45,480 --> 00:27:49,280 Speaker 3: Doctor Minnie. Mick came to the appointment fully prepared with 436 00:27:49,320 --> 00:27:52,480 Speaker 3: a journal tracking her pain symptom cycle, and even a 437 00:27:52,480 --> 00:27:56,400 Speaker 3: body map pinpointing exactly where she felt the pain. When 438 00:27:56,400 --> 00:27:59,680 Speaker 3: she arrived, she was greeted by Doctor Minnie's nurse practitioner. 439 00:28:00,359 --> 00:28:04,760 Speaker 1: The nurse practitioner basically gave me an option to do 440 00:28:05,320 --> 00:28:09,000 Speaker 1: birth control, to keep as is and for us to 441 00:28:09,040 --> 00:28:15,200 Speaker 1: manage symptoms, or to do excision surgery laparoscopic surgery. And 442 00:28:15,240 --> 00:28:19,480 Speaker 1: she told me very point blank that based on my symptoms, 443 00:28:19,680 --> 00:28:22,680 Speaker 1: if we were to do excision surgery with Doctor Minnie, 444 00:28:22,760 --> 00:28:23,879 Speaker 1: she would find something. 445 00:28:24,480 --> 00:28:28,280 Speaker 3: What did she represent to you at that point my life? 446 00:28:29,600 --> 00:28:33,560 Speaker 1: Like she was able to give me hope that I 447 00:28:33,600 --> 00:28:37,840 Speaker 1: could have my life back. I was twenty seven years 448 00:28:37,880 --> 00:28:42,880 Speaker 1: old and in the worst pain that I never imagined 449 00:28:42,920 --> 00:28:47,560 Speaker 1: being impossible for so long, and she looked at me 450 00:28:47,680 --> 00:28:50,360 Speaker 1: and she just said, I'm going to help you, and 451 00:28:50,440 --> 00:28:54,800 Speaker 1: we are going to do everything that we can to 452 00:28:54,920 --> 00:28:59,479 Speaker 1: get you through this, because you deserve to be pain free. 453 00:28:59,520 --> 00:29:02,160 Speaker 1: And I had never heard that before. 454 00:29:03,240 --> 00:29:06,640 Speaker 3: Clinging to that glimmer of hope, Mixed scheduled her surgery 455 00:29:06,760 --> 00:29:10,640 Speaker 3: right away. After nearly a decade of pain and endless 456 00:29:10,680 --> 00:29:14,480 Speaker 3: searching for answers, she finally had a shot at relief. 457 00:29:15,320 --> 00:29:19,800 Speaker 1: I woke up from the surgery and I was loopy, 458 00:29:20,280 --> 00:29:24,920 Speaker 1: and I didn't see doctor Minnie, but I asked the 459 00:29:25,000 --> 00:29:29,600 Speaker 1: person there monitoring me if they found anything, and they 460 00:29:29,640 --> 00:29:33,240 Speaker 1: said yes. I remember saying over and over again, I'm 461 00:29:33,240 --> 00:29:36,480 Speaker 1: not crazy. I'm not crazy. I'm not crazy. I'm not crazy. 462 00:29:36,840 --> 00:29:42,000 Speaker 1: And after a couple hours, I was in a room 463 00:29:42,040 --> 00:29:44,360 Speaker 1: where I got to see my boyfriend, where he was 464 00:29:44,400 --> 00:29:48,800 Speaker 1: able to tell me that I had stage two endometriosis. 465 00:29:49,320 --> 00:29:52,760 Speaker 1: And then doctor Minnie came in and said that they 466 00:29:53,240 --> 00:29:58,960 Speaker 1: excised a lesion of endometriosis and substantial scar tissue. 467 00:30:00,000 --> 00:30:05,800 Speaker 4: It's very validating to go so many months, weeks, years 468 00:30:06,200 --> 00:30:09,840 Speaker 4: just saying, oh, this is just PMS, this is just IBS. 469 00:30:10,440 --> 00:30:13,520 Speaker 4: To finally get that. It's like a huge weightlifted off 470 00:30:13,520 --> 00:30:16,280 Speaker 4: your shoulders. In that moment, I think there was just 471 00:30:16,320 --> 00:30:19,160 Speaker 4: a huge sense of relief, almost like we could have 472 00:30:19,160 --> 00:30:19,760 Speaker 4: had a party. 473 00:30:21,880 --> 00:30:25,600 Speaker 3: This moment of validation was a major breakthrough for Mick. 474 00:30:26,040 --> 00:30:29,120 Speaker 3: But knowing the cause didn't mean the road to recovery 475 00:30:29,240 --> 00:30:33,440 Speaker 3: would be easy. So in Layman's terms, how would you 476 00:30:33,800 --> 00:30:35,760 Speaker 3: define endometriosis? 477 00:30:36,640 --> 00:30:38,880 Speaker 2: What I tell people it's what comes out like period blood. 478 00:30:39,160 --> 00:30:42,600 Speaker 2: That tissue is called enemetrium. Enemetriosis is where something that 479 00:30:42,680 --> 00:30:45,240 Speaker 2: looks like that tissue grows outside. 480 00:30:44,840 --> 00:30:45,520 Speaker 5: Of the uterus. 481 00:30:46,000 --> 00:30:50,160 Speaker 3: That's doctor Karen Tang, a gynecologist and author of It's 482 00:30:50,280 --> 00:30:53,800 Speaker 3: Not Hysteria Everything you need to know about your reproductive health, 483 00:30:54,120 --> 00:30:55,240 Speaker 3: but we're never told. 484 00:30:55,920 --> 00:30:59,160 Speaker 2: And the main symptom that it causes is really severe pain, 485 00:30:59,400 --> 00:31:03,400 Speaker 2: mostly pain with periods, pain with sex. And also it 486 00:31:03,400 --> 00:31:06,720 Speaker 2: can cause lots of inflammation of the pelvis, including all 487 00:31:06,720 --> 00:31:10,200 Speaker 2: the organs that are nearby the rectum, the bowels, the bladder, 488 00:31:10,360 --> 00:31:13,880 Speaker 2: the muscles, the nerves, and that inflammation then causes all 489 00:31:13,960 --> 00:31:18,240 Speaker 2: sorts of other symptoms like really severe constipation, diarrhea, pain 490 00:31:18,280 --> 00:31:22,040 Speaker 2: with bowel movements, bladder urgency, pain with exercise or standing, 491 00:31:22,400 --> 00:31:25,120 Speaker 2: so it basically affects pretty much everything in the pelvis 492 00:31:25,280 --> 00:31:27,440 Speaker 2: at some point as it gets worse, it can also 493 00:31:27,600 --> 00:31:30,320 Speaker 2: cause scarring of the Filippian tubes and that can lead 494 00:31:30,320 --> 00:31:34,160 Speaker 2: to fertility issues. So it really impacts many different aspects 495 00:31:34,200 --> 00:31:35,000 Speaker 2: of someone's life. 496 00:31:35,520 --> 00:31:40,280 Speaker 3: How do you handle the psychological component of that as 497 00:31:40,320 --> 00:31:44,360 Speaker 3: someone who is treating somebody who has not felt seen 498 00:31:44,760 --> 00:31:49,760 Speaker 3: or heard and is dealing with this very overwhelming condition. 499 00:31:50,480 --> 00:31:52,640 Speaker 2: So many people have gotten to the point where they're 500 00:31:52,680 --> 00:31:56,280 Speaker 2: suffering from severe depression or anxiety and stress because of 501 00:31:56,320 --> 00:31:59,520 Speaker 2: what they've been through. Because depression, anxiety actually worse and pain. 502 00:31:59,560 --> 00:32:01,640 Speaker 2: By the way, it also worsen balfunctions. So it's sort 503 00:32:01,640 --> 00:32:04,320 Speaker 2: of a nasty cycle, like you kind of have horrible 504 00:32:04,360 --> 00:32:06,560 Speaker 2: mood symptoms because you're suffering so much, and the more 505 00:32:06,640 --> 00:32:08,360 Speaker 2: mood symptoms you have, the worse you feel. 506 00:32:09,440 --> 00:32:13,440 Speaker 3: It's so fascinating because I remember a period in time 507 00:32:13,640 --> 00:32:19,520 Speaker 3: where endometriosis was almost considered a made up condition, that 508 00:32:19,680 --> 00:32:23,840 Speaker 3: it was a one size fits all for any complaint 509 00:32:23,920 --> 00:32:28,560 Speaker 3: that women seem to have. What are some of the 510 00:32:28,600 --> 00:32:31,480 Speaker 3: most prevalent misconceptions that still abound. 511 00:32:32,160 --> 00:32:35,360 Speaker 2: So enemy triosis is very common it's actually we think 512 00:32:35,400 --> 00:32:38,400 Speaker 2: affects at bare minimum ten percent of women people assigned 513 00:32:38,400 --> 00:32:40,920 Speaker 2: FIELD at birth. But the problem is it can only 514 00:32:41,040 --> 00:32:45,080 Speaker 2: be definitively diagnosed surgically, meaning that it doesn't often show 515 00:32:45,160 --> 00:32:47,600 Speaker 2: up on imaging studies. So a lot of times people 516 00:32:47,720 --> 00:32:49,720 Speaker 2: will get the million dollar work up, they'll go to 517 00:32:49,760 --> 00:32:54,000 Speaker 2: the emergency room, they're seeing their gynecologists, get exams, ultrasounds, 518 00:32:54,040 --> 00:32:57,080 Speaker 2: blood work, and everything comes back completely normal. So this 519 00:32:57,160 --> 00:32:59,200 Speaker 2: is where a lot of people with symptoms of ENDO 520 00:32:59,280 --> 00:33:01,760 Speaker 2: will be told, well, everything looks fine, there's nothing wrong 521 00:33:01,800 --> 00:33:02,520 Speaker 2: with you. 522 00:33:02,520 --> 00:33:04,760 Speaker 3: You just can't tolerate the pain. That sort of thing. 523 00:33:04,800 --> 00:33:07,640 Speaker 2: So unfortunately, anybody who's listening who's had ENDO has probably 524 00:33:07,680 --> 00:33:11,480 Speaker 2: had this experience. Female pain has been so normalized. Period 525 00:33:11,520 --> 00:33:14,080 Speaker 2: pain has been normalized that a lot of times when 526 00:33:14,080 --> 00:33:16,360 Speaker 2: people come to their doctor saying, I can't go to school, 527 00:33:16,400 --> 00:33:18,320 Speaker 2: I can't go to work, I'm missing school, I'm taking 528 00:33:18,360 --> 00:33:21,160 Speaker 2: a ton of ibuprofen, I tried this birth control, that 529 00:33:21,160 --> 00:33:24,560 Speaker 2: birth control, nothing's really helping that it's somehow is sort 530 00:33:24,600 --> 00:33:27,560 Speaker 2: of reflective of their tolerance for pain, or maybe they're 531 00:33:27,560 --> 00:33:30,440 Speaker 2: a hypochondriac, rather than that, maybe there's something going on 532 00:33:30,600 --> 00:33:32,680 Speaker 2: that there's a medical condition that's causing it. 533 00:33:33,880 --> 00:33:37,920 Speaker 3: After surgery, Mick finally felt some relief, not just from 534 00:33:37,960 --> 00:33:41,200 Speaker 3: the bladder pain and digestive issues, but also from the 535 00:33:41,440 --> 00:33:44,760 Speaker 3: constant mental strain. For the first time in years, she 536 00:33:44,880 --> 00:33:48,280 Speaker 3: experienced a break from the cycle that had consumed her 537 00:33:48,400 --> 00:33:53,200 Speaker 3: for so long. What was that like for you to 538 00:33:53,320 --> 00:34:00,240 Speaker 3: hear that now you have tangible reasons for the IBA, Yes, 539 00:34:00,720 --> 00:34:06,800 Speaker 3: for the irregular cycle, for the UTIs the pain. 540 00:34:07,880 --> 00:34:11,480 Speaker 5: It was so overwhelming the week after. 541 00:34:12,040 --> 00:34:17,200 Speaker 1: I remember just staring at my surgery photos because I 542 00:34:17,239 --> 00:34:20,960 Speaker 1: could actually see the proof that something was wrong and 543 00:34:21,080 --> 00:34:24,000 Speaker 1: that I wasn't making it up in my head, and 544 00:34:24,680 --> 00:34:26,240 Speaker 1: I was like, whoa. 545 00:34:27,239 --> 00:34:28,480 Speaker 5: It almost felt like magic. 546 00:34:29,719 --> 00:34:34,480 Speaker 3: What does your treatment look like today? Have you had 547 00:34:34,560 --> 00:34:37,640 Speaker 3: any major flare ups or set back since you were 548 00:34:37,640 --> 00:34:38,759 Speaker 3: properly diagnosed? 549 00:34:39,560 --> 00:34:44,040 Speaker 1: Yes, so I'm currently in a flare right now. I 550 00:34:44,080 --> 00:34:47,200 Speaker 1: feel like after the surgery, I was in denial because 551 00:34:47,239 --> 00:34:51,200 Speaker 1: I was pain free, that it wasn't a lifelong thing 552 00:34:51,320 --> 00:34:55,360 Speaker 1: that I needed to keep up with. And so when 553 00:34:55,560 --> 00:34:58,840 Speaker 1: my dad died, I was in overdrive. My nervous system 554 00:34:59,040 --> 00:35:03,120 Speaker 1: was not related, and my stress levels were so out 555 00:35:03,120 --> 00:35:06,600 Speaker 1: of control that I wasn't managing it properly, and stress 556 00:35:06,680 --> 00:35:10,760 Speaker 1: is one of my main triggers for bladder pain and 557 00:35:11,120 --> 00:35:15,520 Speaker 1: reproductive pain, and I'm currently trying to fight through that. 558 00:35:15,719 --> 00:35:19,000 Speaker 1: But I just had an appointment with doctor Minnie and 559 00:35:19,040 --> 00:35:22,480 Speaker 1: again she's like, we're going to get this taken care of. 560 00:35:23,200 --> 00:35:26,560 Speaker 3: Well, now you're living your life and you're incorporating this 561 00:35:26,640 --> 00:35:31,279 Speaker 3: diagnosis into it as opposed to before it was properly diagnosed, 562 00:35:32,280 --> 00:35:38,200 Speaker 3: ruling your life correct. So what has cultivating this online 563 00:35:38,239 --> 00:35:40,560 Speaker 3: community meant to you? 564 00:35:41,520 --> 00:35:48,000 Speaker 1: It has brought me so much. I have loved speaking 565 00:35:48,040 --> 00:35:53,239 Speaker 1: with every single person that has DMed me and has 566 00:35:53,280 --> 00:35:56,680 Speaker 1: asked for advice or me asking for advice, and to 567 00:35:56,719 --> 00:36:00,880 Speaker 1: be able to have that resource is every But I 568 00:36:00,920 --> 00:36:04,160 Speaker 1: hope that other people can say that when they come 569 00:36:04,160 --> 00:36:06,480 Speaker 1: across my content too. I hope that they feel like 570 00:36:06,520 --> 00:36:11,560 Speaker 1: a superpower walking into situations where they couldn't feel seen 571 00:36:12,000 --> 00:36:15,200 Speaker 1: or couldn't feel heard. That's all I can ask for. 572 00:36:16,640 --> 00:36:19,839 Speaker 3: Are there things that give you hope in terms of 573 00:36:19,960 --> 00:36:22,600 Speaker 3: the future of treatment for demetriosis? 574 00:36:23,320 --> 00:36:25,600 Speaker 2: Yeah, And I do like to end always on a 575 00:36:25,640 --> 00:36:28,719 Speaker 2: positive note because sometimes it's so bleak, it sounds so depressing, 576 00:36:28,760 --> 00:36:30,000 Speaker 2: but there is a lot of hope and that a 577 00:36:30,080 --> 00:36:33,160 Speaker 2: lot of that is because of people with nmtriosis who 578 00:36:33,200 --> 00:36:36,560 Speaker 2: have spoken out, who have made these advocacy organizations and 579 00:36:36,600 --> 00:36:39,799 Speaker 2: these support organizations, they have fought for funding. A lot 580 00:36:39,840 --> 00:36:43,800 Speaker 2: of celebrities you mentioned, like Bendy Irwin, Olivia Culpo, Christy 581 00:36:43,840 --> 00:36:46,240 Speaker 2: Tigue and so many celebrities have spoken about their experience 582 00:36:46,280 --> 00:36:49,520 Speaker 2: with endometriosis. And there are some of these places like 583 00:36:49,680 --> 00:36:53,120 Speaker 2: ct endo Rise in Connecticut and MIT that are actually 584 00:36:53,160 --> 00:36:55,440 Speaker 2: really trying to do good work and trying to find 585 00:36:55,440 --> 00:36:58,160 Speaker 2: some of these answers. So I am very optimistic. I 586 00:36:58,200 --> 00:37:00,640 Speaker 2: think that things even within the last couple of years 587 00:37:00,640 --> 00:37:03,879 Speaker 2: compared to when I finished my training in twenty ten, 588 00:37:04,480 --> 00:37:08,960 Speaker 2: was very different, and so much now is looking more hopeful. 589 00:37:09,239 --> 00:37:11,640 Speaker 3: What are you most proud of about the way in 590 00:37:11,680 --> 00:37:15,160 Speaker 3: which your sister's been navigating this diagnosis. 591 00:37:15,960 --> 00:37:20,040 Speaker 4: I think she, as everybody, has been through so much 592 00:37:20,200 --> 00:37:23,360 Speaker 4: and she's just learned to rise above. Of course, she 593 00:37:23,440 --> 00:37:25,719 Speaker 4: has her days where she's a little bit down and 594 00:37:25,920 --> 00:37:29,640 Speaker 4: needs that little extra boost of self confidence, but I 595 00:37:29,719 --> 00:37:33,799 Speaker 4: think her resiliency is really incredible and admirable. 596 00:37:34,400 --> 00:37:36,760 Speaker 3: What do you want people to take away from your story? 597 00:37:37,800 --> 00:37:42,600 Speaker 1: Your body loves you, even if it feels like it's 598 00:37:42,640 --> 00:37:47,239 Speaker 1: breaking down. All of the pain and all of the symptoms, 599 00:37:47,640 --> 00:37:52,120 Speaker 1: confusing symptoms that really just don't make sense, really do 600 00:37:52,320 --> 00:37:53,320 Speaker 1: actually make sense. 601 00:37:54,400 --> 00:37:57,799 Speaker 5: And if you use that as. 602 00:37:58,320 --> 00:38:03,239 Speaker 1: Strength to take with you throughout this life, whether it 603 00:38:03,320 --> 00:38:06,160 Speaker 1: be like a lesson that you learned from your diagnosis 604 00:38:06,280 --> 00:38:11,080 Speaker 1: or the diagnosis process, I hope that you know that 605 00:38:11,200 --> 00:38:15,919 Speaker 1: your body makes sense, and your story makes sense, and 606 00:38:16,040 --> 00:38:21,480 Speaker 1: what you are going through makes complete sense when it 607 00:38:21,680 --> 00:38:23,120 Speaker 1: feels like it doesn't. 608 00:38:24,320 --> 00:38:29,000 Speaker 3: For more on endometriosis and menstrual health, visit the Endometriosis 609 00:38:29,000 --> 00:38:34,080 Speaker 3: Foundation's website at indofound dot org. You can also follow 610 00:38:34,120 --> 00:38:39,120 Speaker 3: Mixed Story on Instagram and TikTok at Mickzason and learn 611 00:38:39,200 --> 00:38:42,399 Speaker 3: more from doctor Tang at Karen Tang, MD. 612 00:38:43,360 --> 00:38:46,520 Speaker 1: My name is Mixxason and I struggled for ten years 613 00:38:46,640 --> 00:38:49,600 Speaker 1: until I got my endemetriosis diagnosis. 614 00:38:51,680 --> 00:38:55,960 Speaker 3: On next week's episode of Symptomatic, Samayra Ahmed's life takes 615 00:38:56,040 --> 00:38:59,120 Speaker 3: a terrible turn as she goes from living it up 616 00:38:59,120 --> 00:39:02,439 Speaker 3: in her mid twenty to nearly blind in a matter 617 00:39:02,480 --> 00:39:06,680 Speaker 3: of days. I walked into a wall, collapsed in my office, 618 00:39:07,320 --> 00:39:09,839 Speaker 3: lost vision in both of my eyes, and couldn't feel 619 00:39:09,880 --> 00:39:14,320 Speaker 3: half of my body. The doctors discover rapidly spreading inflammation 620 00:39:14,400 --> 00:39:17,280 Speaker 3: in her brain and scramble to find both the cause 621 00:39:17,320 --> 00:39:20,360 Speaker 3: and to treatment to save what remains of her vision. 622 00:39:23,160 --> 00:39:26,120 Speaker 3: As always, we would love to hear from you. Send 623 00:39:26,160 --> 00:39:28,920 Speaker 3: us your thoughts on this episode, or share a medical 624 00:39:28,960 --> 00:39:33,560 Speaker 3: mystery of your own at Symptomatic at iHeartMedia dot com, 625 00:39:33,960 --> 00:39:38,000 Speaker 3: and please rate and review Symptomatic wherever you get your podcasts. 626 00:39:38,360 --> 00:39:42,839 Speaker 3: We'll see you next time. Until then, be well. Symptomatic 627 00:39:42,960 --> 00:39:46,239 Speaker 3: is a production of Ruby Studio from iHeartMedia. Our show 628 00:39:46,320 --> 00:39:49,880 Speaker 3: is hosted by me Lauren Bret Pacheco. Executive producers are 629 00:39:49,960 --> 00:39:53,799 Speaker 3: Matt Romano and myself. Our EP of Post Production is 630 00:39:53,920 --> 00:39:58,600 Speaker 3: James Foster. Our Supervising producer is Cierra Kaiser. Our writers 631 00:39:58,680 --> 00:40:01,920 Speaker 3: are John Irwin and I Diana Davis, and our editor 632 00:40:02,040 --> 00:40:02,880 Speaker 3: is Cierra Spreen.