Atypical Endometriosis Symptoms and Getting the Right Diagnosis (Episode 436)

Full Transcript: Episode 436

Lisa Hendrickson-Jack: Today I share my interview with Jenna Rishe and we are focused on her experience with endometriosis. In today’s episode, Jenna shares how her symptoms were a bit more atypical and how that created a challenge for her to get an accurate diagnosis. And I feel like one of the themes that comes out in today’s interview is the importance of seeking specialized care. And I know when the topic of endo comes up, the importance and difficulty of getting a diagnosis because it does require surgery. It requires at least at this time a laparoscopic procedure in order to positively identify endometriosis. However, even that you could potentially have a false negative situation if the surgeon who is doing the diagnostic procedure is not skilled. So I feel like today’s episode really highlights the importance of finding the right practitioner who is skilled and specializes in the area that you’re seeking support and who specializes in the area that you’re seeking support for — especially when you think you have a specific condition or when it’s pretty clear that you do have a specific condition. You know, whether it’s thyroid or in this case endometriosis, it just speaks to the importance of working with skilled, qualified practitioners who are experienced in that particular field. I feel like this intro gives you a sense of what unfolds in our call today. So before we jump in, I’ll just tell you a little bit more about Jenna.

Jenna lives a full and fulfilled life despite managing multiple chronic illnesses and surviving open heart surgery. Her personal experience navigating the health care system as a registered nurse who was eventually diagnosed with endometriosis along with several other debilitating conditions makes her uniquely qualified to support anyone navigating their imperfect journey. As the founder of the Endometriosis Coalition and author of Part of You, Not All of You, Jenna focuses on educating and encouraging people suffering from chronic illness, advocating for their needs and helping us all pivot to a better direction in our lives. So without further ado, let’s go ahead and jump into my interview with Jenna Rishe.

And I’m really excited to be here today with Jenna Rishe. Welcome to the show.

Jenneh Rishe: Thank you so much for having me.

Lisa Hendrickson-Jack: Well, thank you for being here. I’m glad that we were able to work it out. It’s always fun trying to schedule in different time zones and all that fun stuff. But I’m really glad that you’re able to join me today and I’m really excited to hear about your experience. At the time that we’re recording this, I’ve recently released a period pain series episode and I had shared an episode with Stasha Washburn who had shared her experience with endo and it was a very profound, I would say, episode. And I think for me, hearing the stories of women who’ve had to suffer with so much pain, not being believed and not being supported to the degree that they should be, it’s just always really sobering. And it’s just like, why do we have to go through this stuff, right? So I’m really looking forward to hearing your experience and your story and what prompted you to write your book. So maybe let’s just start there and you can let us know a little bit about your history. Maybe one of the questions I often ask on those episodes is, you know, when did you get your first period? What was your experience of menstruation like? And kind of what brought you to where you are now? And I think that question is fitting in your case. So maybe let us know what led you to write your book and just kind of take us into your experience.

Jenneh Rishe: Yeah, sure. So people are usually surprised to hear that my periods were always really normal. As a teenager, they were short, sweet, like not too heavy, not very painful. And I would say that that was the case for pretty much most of my young adult years. I ended up going on birth control when I was 18 for birth control purposes. And so once I started going on that, my period was almost like non-existent. I barely — I had those fake bleed days when I was on the inactive pills and that was really it. So it was when I was 26 actually that I started having issues. I got off of the pill and transitioned to an IUD and it was in that period that things started happening that had never happened to me before. I developed this really intense pain in the right upper side of my stomach one day, and over the course of a few months, seeing that it kept coming back and it was cyclical and timed with my period, I noticed that it would come about a few days before my period was due and then it would hang around about three days later. And that was kind of the start of this journey of things being wrong with my body and trying to figure out what was going on. I learned eventually that it was endometriosis that was affecting my diaphragm and so I was experiencing kind of rare symptoms — rare to the normal person, but if you’re in the endometriosis world, I’m finding that my symptoms really weren’t that rare. There are a lot of women who have the same symptoms I had. So it was like a pain in the right upper side of my stomach, shortness of breath, chest pain, shoulder pain specifically like in my scapula. And when I took these concerns to my gynecologist, I got kind of that, oh well, those two things, there’s no way they can be related, that has nothing to do with your period. So I just took that as Bible truth and kind of just lived with that cyclical, weird pain and shortness of breath month after month until things just got so bad that I couldn’t just live with it anymore. Developed more pain, other symptoms like constipation, nausea, pain with sex. So it was like over a course of about two years of these symptoms just kind of slowly building on one another and the whole time I’m on birth control. So that idea of birth control suppressing endometriosis is not exactly true. If anything, it’s symptom management, but as the disease gets worse, you get to a point where the pill can’t really even do that for you anymore. And that’s where I was, where everything got reared and stirred up and we just couldn’t control it anymore. But finding people that wanted to understand that endometriosis was not just period pain and pelvic pain was the hardest part of my entire journey.

Lisa Hendrickson-Jack: Yeah. No, that is — I have a lot of questions because I want to unpack a few things there. But I mean, it’s kind of hard enough for women with quote textbook endo kind of thing, like when you actually have the pain with your periods. It’s even in that situation when it’s kind of textbook, it’s hard for women to get support. So obviously in your case, having it be a completely different presentation — I’m sure that did not help you at all when it’s hard enough for women to get support when it does meet the actual criteria that’s literally listed in the research studies. So take us a little bit more deeply into, because what you’re saying is that your particular endo, like the lesions, were affecting your diaphragm. So they were affecting in a different way. So I’m curious, you said your periods are pretty typical, pretty normal. So were they painful at all or were they uncomfortable, etc.? And then you shared about the symptoms, but I kind of want to just ask more, like I kind of want more of a picture of what it felt like. Because you said kind of stomach pain, chest pain, shortness of breath, but it was cyclical. So I’d love for you to hang out there a little bit and just really paint us a picture of what this was like for you.

Jenneh Rishe: Yeah, so no, my periods were not painful before this. It was literally one day driving to work, this intense pain in my stomach, and then I was never the same again. But before that day, zero pain, zero issues. And my doctors think that being on hormonal birth control for all the years that I was on it was just suppressing symptoms that were likely disease that was there — I just didn’t feel it. So when I actually developed the disease, I don’t know, but I didn’t feel any symptoms of it until I was 26 years old. And so the best way I can explain the pain — and this is what I would always describe it as and no one would understand — I’d say I feel like there’s something sitting at the bottom of my stomach that’s keeping me from being able to take full breaths, like I can feel something stopping it. And that was just constant, that was always there. But the pain that would come before my period was like a sharp stabbing pain when I would take a deep breath in — it was like somebody was stabbing me in my stomach. And in the beginning, the first few months, like I said, it would only come a few days before my period and it would leave a few days after. So I would say about six days out of every month that I would experience this pain. But each month it kept coming back. So when I went to my first gynecologist and said, hey, I’m noticing this every month, you know, for the last four months or so, and just kind of got this like, I don’t think it’s related, keep an eye on it kind of thing. And so then I kind of just like I said, lived with that sharp pain coming before my period, hanging around a couple days later for another like five months or so. And then I saw another gynecologist because I moved and changed providers. And at this point, there are other little symptoms that are creeping up that I don’t know are related to this chest pain that I’m having. Like I said, I started having constipation, I started having pain with sex. And this new gynecologist was asking me just in my usual intake that you have with a new doctor, asking me very specific and pointed questions. And I’m saying like yes to the pain with sex and the constipation and I’m telling her about the cyclical pain. And she was the one that asked me if I had ever heard of endometriosis. At that point, I had not. And her bringing it up to me was the first time that anyone had mentioned the word or that I had heard of the word. And her explanation was just kind of like, you know, like it was like the flu. Like, oh, this is what it is and we treat it with pain medication and birth control and you know, that’s just what it is, we do our best to keep you comfortable. And so I just took that and didn’t really research much, just trusted that that was the case, because she presented it just so calmly and not very seriously. So I didn’t take it as being all that serious. And so our plan from there was to go on birth control and see if that controlled my symptoms — and remind you, I already had an IUD at this point for birth control purposes. So we did birth control pills on top of the IUD. So I’m just being like flooded with hormones. And we do that and the first pill is not helping, and I try it for three months, not getting any improvement. Then we switch to another pill for three months, not getting an improvement. We do that about four times. So then over this time, my pain is getting worse, then it’s becoming not just cyclical. Now I’m feeling uncomfortable most days. So to me, something very clear is going on, and what we’re doing is not working, and I’m feeling worse and we’re not getting anywhere. And it was actually my primary care provider — seeing him for my yearly physical — who noticed and just chatting with me and going through all my medications, like, you’re taking a lot of ibuprofen, why are you taking so much ibuprofen? And I explained to him this weird pain and thinking I might have endometriosis. And he goes, well, you know, maybe we should actually like do the surgery to see if that’s actually what’s going on because you’re trying all these hormonal things, you’re on these anti-inflammatories, and you don’t seem to be getting better. Why don’t we confirm that that’s actually what’s going on? Because if it’s not, I’d like to be figuring out what else could be happening. So this is almost a year into this trialing and airing birth controls before anyone even mentioned, hey, let’s actually do a diagnostic surgery. And I found it really surprising that it was my primary doctor that suggested it, not even my GYN. And I found that really surprising that he was the one that wanted to actually confirm this suspected diagnosis and not just be assuming based on trial and error of hormones.

Lisa Hendrickson-Jack: The listeners can’t see my face, but you can. I feel like I’m like, there’s like all these points in time where like blood is boiling, but I’m gonna work through it. You’ve given us a good picture of your birth control history in particular. So was the IUD the first type of — and I’m assuming it was a hormonal IUD that you were on — because you were speaking about it?

Jenneh Rishe: Yeah. So the first birth control I ever did was the combination pill, when I was 18 in college for birth control purposes. Actually, you know what, let me rewind. I first started on the patch. It was called OrthoEvra. And I was on that for a few years, but then they came back saying that that one was causing a lot of blood clot issues in young women. So my doctor switched me to the pill. And that was 18 and over. So through college I was on the patch, and they took me off because of blood clot issues and put me on the pill. So the idea I think was the patch was such a high continuous amount of hormone, so they were seeing more issues with it than with pills. So do you know about Yaz?

Lisa Hendrickson-Jack: I do, I do. Yeah, because it’s like, of all the pills, they put you on Yaz, which is for anyone who doesn’t know, just look up Yaz lawsuits and you’ll get an education.

Jenneh Rishe: Yeah, knock on wood, I didn’t have any issues with that. So then I stayed on the pill for years with again no issues. I tolerated it well. I happened to be one of those people that didn’t really get any side effects from it. I felt completely normal on it. And then it was when I turned 26 that I decided I wanted an IUD because I just didn’t want to take a pill every day. So I got the what was called the Skyla IUD at the time. It was a lower dose version of the Mirena and it was a smaller device. So it was supposed to be more comfortable of an insertion for people who have never had kids. And I don’t know if I can agree with that because it was the most painful thing that I’ve ever experienced. I remember just like rolling around on my floor when I got home and I’m not even exaggerating, like the pain was so bad. And I don’t feel like anyone prepared me for that.

Lisa Hendrickson-Jack: I’ve been doing my what I call my Pill Reality series for many years, and what I learned kind of early on is when I interview women who’ve used the IUD, I need to ask them about that in particular because I wasn’t really aware. So for me, I was always terrified of the IUD. There’s just certain things that I’m like, I just can’t get my head around, and that was one of them. But I didn’t really realize it until I started interviewing women. So I’m not sure how much conversation you’ve had around this, but it’s pretty high the percentages. So not everyone has pain, but in my interviewing experience, which is definitely not scientific, it’s like eight to nine out of ten have this horrific pain with insertion. So do you want to quickly take us through what that was like and if you were offered anything for it?

Jenneh Rishe: Yeah, I was not offered anything. I wasn’t prepared to take anything beforehand. There was no instruction on that. What’s funny is my best friend at the time, we got our IUDs like in the same week. She got a copper one and I got the one that I got and we both were like, what the heck, that was the worst experience ever. Her experience was exactly the same. I remember driving home from that appointment and just like gripping the steering wheel at a red light, just like praying that I got home fast enough, and thinking, I wouldn’t have driven myself to this if I had known that this is how I was going to feel after. And then just having to figure it out for myself how I should kind of try to bounce back from it. And thankfully I’m a nurse, so I knew anti-inflammatories, pain relief. But there was no education at all, pre, post, any of it.

Lisa Hendrickson-Jack: Yeah. And just like a public service announcement: for those who listen to the Pill Reality series, you’ve probably heard me talk about the same thing over and over again. But I think what I’ve learned and gathered from all the interviews is that if you are thinking of getting an IUD placed, I think it’s important to know that you can at least ask the doctor for something for the pain. That’s something I don’t think is offered very often. But you can request it. And I often hear women that they’re told to go like around your period because they say it’s more open. But my logical brain knowing the menstrual cycle and fertility awareness would indicate that if you do chart your cycles, potentially going around ovulation — especially if you check your cervix — that’s when the cervix is the softest and there’s an actual natural opening that’s bigger than what would be there during your period from my experience. So I’m not saying that this is the way to go, but considering you’re offered exactly nothing most of the time, I would feel like this is better. So at least you have some sort of information: go around ovulation if possible, ask for pain medication just in case, especially if you’ve never had kids before and there’s never been anything in your uterus. Okay, so moving forward. One of the things that struck me was that it sounds like you were fine and then you had the IUD and all of a sudden your symptoms kicked up. So what do you make of that?

Jenneh Rishe: So now in knowing what I know about endometriosis and deep diving and getting so down to the nitty-gritty of how we think this disease works, I do think that the hormonal birth control was suppressing symptoms while I was on it. And then I think when I switched to the IUD, which is just local and less of that systemic suppression of ovulation, I think that that gave the endo time to kind of do whatever it wanted without that constant suppression from the combined birth control pill.

Lisa Hendrickson-Jack: Yeah, that’s interesting. That makes sense. I mean, I think what women are commonly told of course with the hormonal IUDs is that it’s a low dose and, like you said, local — as if we don’t have a circulatory system. So it’s like, yeah, I was just going to stay in the uterus. Is it? Are you sure? Why is my hair falling out — right? Something obviously got out of my uterus. If I put mango flavored lotion on my skin, it goes through my circulatory system. So that is a very interesting possibility because I thought it was interesting that somehow when you transition to the IUD, that’s when you started to feel those other kind of painful symptoms. So the blood boiling thing was — and I’ve heard this before and in my brain I kind of understand where they’re coming from because in a doctor’s tool belt that’s how they suppress symptoms — but if you already have an IUD in your body, where is the study that says it’s okay and safe to put you on more drugs? Like where is the study that says you should be taking birth control like a pill while you have an IUD that’s already there? There’s a part of me that’s just, when I hear stuff like that, I’m just like, why are you experimenting on Jenna? And that’s the thing — at the time, I was in my 20s, nothing had ever been wrong with me before. I was at a hospital that I worked at that was nationally acclaimed. So I’m not going to be thinking, oh, let me make sure they’re doing the right thing for me.

Jenneh Rishe: I didn’t know anything about this disease. I don’t know anything about anything related. My history as a nurse was in oncology and cancer. So this was so outside of my realm of specialties. And so when I look back, I’m like, how did you just agree to something like that? Well, why wouldn’t I have? I was somewhere where I trusted the care that I was getting and I thought I was seeing experts in what I was being seen for. So that idea of questioning it right off the bat — like, what would I question? I didn’t know what to ask.

Lisa Hendrickson-Jack: And I would imagine that there are women in a similar situation. There’s just a part of me — because for many of the listeners who’ve been listening to the show for a while — that’s the kind of thing where if I’m doing a group or a program and something like this comes up, everyone’s eyes go wide. Like, what do you mean you were on the IUD already and you were given a pill also? And so in your case, you said the symptoms worsened. I’m not making a conclusion there because I don’t have the information to do that. And like I said, where’s the study? But I feel like I have to say that because I’ve heard this before — you’re not the first person who I’ve spoken to who has been given a prescription for the pill when they’re already using an IUD. And I just feel like that’s something where flags should go off. If you want to suppress it with the pill, maybe we should take the IUD out.

Jenneh Rishe: Absolutely. And then do that completely, yes.

Lisa Hendrickson-Jack: Okay. And then I’m trying to think of the last thing here. So the other thing I wanted to touch on was your experience with — so this experiment went on for about a year where you were put on one while you still have the IUD inserted, and then it didn’t work as well and you were kind of switching. And it took that long. So first, it took quite a while for you to get a doctor to kind of take you seriously, and then it was your primary care provider who was like, why don’t we see if you really have endo? And that’s when I speak to people — it’s so common that we are treating before an actual diagnosis. And with more hormonal drugs coming out, that’s actually the push that’s happening even more — if you do well on this medication, then this means you likely have this disease — which to me is just such a backwards way to go about something that wreaks such havoc in somebody’s body.

Jenneh Rishe: And I thank my lucky stars that my primary suggested that because how long would that have gone on for? I just was either getting told, well, you probably don’t have endo if none of these things are working, or I’m just stuck on these drugs because they’re assuming that’s what I have. And so it could go either way. But that’s what’s kind of confusing to me — of course, surgery is invasive and everyone wants to avoid it if they can, but if there is something that can tell me with 100% certainty what I’m dealing with, I want to know. Give me that option. Let me decide if it’s too risky of a situation. I want to know what’s going on inside me, not just guess based on hormones and response to medication.

Lisa Hendrickson-Jack: Yeah. It’s very troubling to me to hear that, because I had mentioned the previous interview that I recorded with Stasha, and she said a similar thing because she was experiencing ridiculous out-of-control pain with vomiting and the whole thing every time she had her period. So she was in the classic endo camp. And they would give her these drugs, right? The highest, like the morphine, the opiate, whatever the hardest stuff is — they would give her that and it wouldn’t necessarily help. And so they said, similar to you, well, if you’re not responding to the medication, maybe it’s in your head — not saying fully to her face, but insinuating that it is. And the irony is that I like to go back to the definitions of things. So if you look up endometriosis — if you’re a nerd and you want to go to Google Scholar and you like want to go to town — they’re going to tell you what the diagnostic criteria is. And it’s not if you don’t respond to the medication. So like, where did this come from? And it’s wild. Like, we have a way to say, this is what this looks like under a microscope, and yes you have it and no you don’t, but we’re still like, oh let’s see if you respond to the birth control. And ironically, if you were to speak to women who actually have endo, or maybe more holistic care providers who provide a different type of approach that’s potentially more at reducing inflammation, not responding to the birth control — like having been on birth control and it not helping — is the sign that it’s possibly endo, right? It’s the opposite in reality. The opposite is true. Like if you have pain that’s so bad that you take the high level opiate stuff and it doesn’t do anything, that’s a sign that it probably makes it more likely that it is endo. So I feel like this whole thing is very, very strange.

So the key point that we’re getting at here is how difficult it is for women to get a diagnosis and to be cared for. So in your case then, maybe talk a little bit about that, because now that you’ve kind of gone through this, you’ve also heard so many different stories from so many women with endo and all of those kinds of things. Talk to us a little bit about how challenging it is for women to be taken seriously, to get care, and what ultimately happened. Like, did you actually get the surgery and get the full diagnosis, and if so, how did that change your course of treatment?

Jenneh Rishe: Yeah. So I’ll kind of just start with what happened after the you-should-have-surgery thing and then lead to what I think all the roadblocks and why it was so difficult. So I have a diagnostic surgery. It was done by a surgeon who was not an endometriosis specialist. At that time I did not even know that was a thing that existed. So it was a surgeon who usually does gynecological cancer surgeries. My GYN felt he was the best choice from a surgical skill perspective because if you think about it, like endo being this strange cellular disease, an oncologist dealing with tumors may be the best person to be able to remove something like that. And so I have the surgery. When we’re doing the consent, he basically tells me, warns me, that he may not find anything at all, and even if he does find something, the way that endo is, I very well may need a surgery like every year for the rest of my life. Basically. So I’m going into this surgery with wonderful optimism. So ultimately, he does find endometriosis on my diaphragm on the right side. That’s the only biopsy that came back positive. None of the other ones he took throughout my pelvis did. And so after that biopsy came back positive, then my gynecologist felt that the best next option was to go on Lupron.

Lisa Hendrickson-Jack: Maybe briefly share what Lupron is and what it’s primarily used for.

Jenneh Rishe: Yeah. So Lupron was originally FDA approved to treat men with prostate cancer. Basically suppresses hormones completely. And for women with endo, the idea is that if you suppress all ovarian function, all stimulation and hormone fluctuation and any hormones being fed to the endometriosis, that it will suppress the disease and you won’t have symptoms. Problem with that is: one, it was FDA approved for prostate cancer. Two, the clinical trials to get that drug approved for endo are so shady — you can do a whole episode just on that alone. And three, it was only FDA approved to be used for a max of a year. So it’s a short-term solution with a lot of potential side effects, the biggest ones being bone loss, suicidal ideation — permanent, irreversible bone loss. And the biggest problem with this medication is that people are not being informed adequately to consent to a treatment like that. There are people who do get relief from it. It’s temporary obviously, because you can only be on it for so long, but for some people that’s worth it. And that is not my issue with the drug. My issue with the drug is most people don’t know what they’re signing up for when they’re saying yes to it. And I can say that I only knew because I gave the drug as a cancer nurse. So I knew what I was signing up for, but I wasn’t consented from the doctor putting me on it. He just was like, here you go, you come every three months and this, and we’ll see how it goes. He didn’t sit me down and tell me, you know, you could have bone loss and all these things. I knew this myself. And at that point, I was pretty desperate to see, can I find something that helps me? And it didn’t. If anything, I felt worse when I was on it. And when I say that, I mean my symptoms were progressing. Now at this point, I am like in pain all the time and just like your friend, no pain medications touching it. I’m still working so I can’t take narcotics during the day. So I’m just trying to get by until I can get home and take things that may help and usually don’t. So I’m getting worse and I’m on this medication that’s quite literally making me feel crazy. I feel out of my mind, just like angry and psychotic, honestly. And I was supposed to take it for six months and only lasted three. And I was like, this isn’t working, I’m not getting better, this is not worth this to me. And I got so much pushback in that because it was viewed as — how can we know if you’re not going to finish the full treatment? I even had one specialist tell me that since the Lupron wasn’t working, she didn’t believe that my biopsy was correct. This is not endo. It was only one specimen, she said. And you should be responding to this drug. And that was when I realized, oh, this is something way bigger than I ever realized that I was going to be dealing with. It was in that moment when she was questioning my pathology report that I was like, oh wow, I need to research. And that’s when everything changed for me — when I started researching the disease and when I learned that there are endometriosis specialists who — this is all they do.

And I have endo. We have that biopsy. But like nobody wanted to acknowledge that that could be why I was getting so sick. It’s almost like everyone wanted it to be something else. We wanted to find something else to explain it. And in my mind I’m thinking, it has to be this. What else could it be? This is the only thing I know that is wrong with me. And once I hit a dead end of test after test and specialist after specialist, I found a Facebook group actually called Nancy’s Nook for endometriosis. And it was started by a former nurse who herself had endo and dealt with all the same issues that I’m explaining to you, and wanted to create a resource of just like evidence-based education and a specialist list of surgeons who actually know endometriosis well. And it wasn’t until going through that group that I found other women who were having the same chest symptoms that I had. Because before this, everyone that I talked to or heard of with endo — pelvic pain was always their main symptom. So it was so refreshing to find other women who were having the same breathing and chest issues. And they were all going to the same place in Atlanta. And I was like, what is it about this place that everybody with my issue is going there? It was called the Center for Endometriosis Care in Atlanta. And I look into them and they’re the center that’s been doing endometriosis care primarily for like decades. It’s all they do all day long every day. And I reached out to the surgeon and said, hey, this is what’s been going on with me — do you think you can help me? And right away he was just like, I just don’t think you’ve been seeing people who understand endometriosis as well, and I think I can help you. And so I scheduled a surgery with him after doing a consult. I flew out for a consult and he did a very thorough head-to-toe assessment and concluded I likely have pretty bad disease on my diaphragm, could possibly have it on my lung. Based on the symptoms I was having from a GI perspective, he suspected I likely have it on my bowels. He did a very thorough pelvic exam and diagnosed me with pelvic floor dysfunction and possible adenomyosis. And this is the first time any of these diagnoses are being thrown at me. No one had ever mentioned these to me, even though I’d always been pretty sensitive to pelvic exams and kind of jumping off the table kind of pain that I just thought was normal because that’s how I always was. And he was like, no, you shouldn’t be jumping off my exam table before I’ve even done anything yet. So ultimately I scheduled what’s called excision surgery with him. And that is basically when they cut out all of the endometriosis lesions instead of just burning them off like most surgeons do in what’s called ablation surgery. In ablation, they just kind of burn the top of the disease and leave the base there. But with excision, they cut it all out as best as they can. And that sometimes even includes like healthy tissue to make sure you get it all. And not many surgeons do excision. It’s not very accessible. A lot of insurances don’t cover it. So it’s hard to find someone who does it, and then it’s hard to be able to access it too. I ended up emptying my savings to be able to pay for this surgery. I felt like it was my only hope. And so on May 19th of 2016, I had a two-part surgery where they did the surgery for my chest to remove the endo from my diaphragm and then they did a pelvic laparoscopy. And at that time, I did have endo in so many other places besides just my diaphragm — it was on my bowel, uterosacral ligaments, on my bladder, my pelvic sidewall. Like it was everywhere. And what I found interesting was that diagnostic surgery I had was just a year prior to this, and I was thinking, how did all this disease just show up in a year’s time? And I asked my surgeon this — I was like, how is it possible that none of this other disease was here when he did my surgery a year prior? And he said, it’s very unlikely that you had no disease in these other areas. It’s more likely that he didn’t know what he was looking for. He has this very textbook idea of what endometriosis looks like in the body, and he very likely missed signs of early disease, of old scarred-over disease. He’s like, there’s no way this disease wasn’t here a year ago. And I just realized in that moment, oh, it’s not even just about getting the diagnosis — it’s about seeing the right surgeon that knows what to do. There are so many things. And that’s kind of what drove my ambition to raise awareness and education because I think I fell pitfall to every single error you could. It was misdiagnosis, it was mistreatment, it was delayed diagnosis, wrong surgery. And I was just like, wow, like there are so many issues with this disease. It’s way beyond just getting someone to believe you. It’s then finding someone who knows what the heck they’re even doing. And I thankfully did, and haven’t had any endo pain since that surgery in 2016. And so I am an advocate for early diagnosis, the right surgery, multidisciplinary care — because I still had a lot of organ dysfunction after the surgery because I had this disease ravaging me for so long. So for me, that included dietary and nutrition because my bowels didn’t work exactly the same way anymore. It was pelvic floor physical therapy to help relax my muscles that were so tense. It’s a full body recovery after. And so the earlier we can get people thinking about this diagnosis and actually diagnosing it and actually treating it and managing it correctly and not just throwing hormones on top of people — I think about that year wasted of just hormone suppression that could have been avoided if I had seen the right person right out of the gate.

Lisa Hendrickson-Jack: Yeah. I mean, this is obviously something we could talk about for the better part of the afternoon. But the key pieces that I think in general, when I talk about women’s reproductive health, whether it’s period issues or whatever, I generally suggest, you know, it’s good to have someone who specializes. Like if you have a thyroid issue, it’s better to go to someone who specializes in thyroid function. And I talk about a team approach — meaning we need a surgeon in your case with endo, but it may also be useful to talk to a functional medicine doctor who can also help you to reduce inflammation so you have more of that whole body care thing. In the case of endo, when you’re considering surgery — what you said is very, very important. If it’s something that you have been considering, that is really disturbing to even think about — that you could literally go under the knife to get the diagnostic procedure and have it not correctly identified if the person who’s doing it isn’t skilled enough. So that’s a huge piece of this for women who are dealing with it. And it’s actually scary that so many doctors would be willing to do it even though they really don’t even know, they’re not even necessarily familiar with it.

Jenneh Rishe: It’s incredibly scary. And it’s something that I don’t think most people know happens. And it’s something we’ve been — and I say we, I mean the endometriosis community — looking at. And we say like, this is clearly a specialty that is above the area of expertise for a general GYN. Why isn’t it? And a general surgeon as well. So why isn’t it treated that way as a subspecialty? That’s like our biggest desire, is to acknowledge it as the specialty that it is.

Lisa Hendrickson-Jack: Yeah. And it’s a serious chronic condition. And for some women having surgery after surgery — part of that could be that they’re not getting the right surgery. Part of it could also be that they’re not necessarily making the dietary lifestyle changes that would need to sustain it. But all of these things — share with us a little bit then about your book, because given your experience, traumatic, it makes sense that you wrote a book about this. Because this is a lot of years of your life, a lot of suffering and pain, and a lot of having to advocate for yourself, a lot of money that you had to spend. Share with us a little bit about the book — the motivation behind writing it, and also the message that you have for women who are experiencing, especially in your case being that your symptoms were atypical, what kinds of things would you want the listeners to know?

Jenneh Rishe: Yeah, sure. So my book is called Part of You, Not All of You: Shared Wisdom and Guided Journaling for Life with Chronic Illness. And the motivation for this book came from that idea of what I was telling you — this disease came in and just rocked my world, turned it completely upside down. I went from a fully functioning, very ambitious, like killing and crushing every goal 20-something year old to being bed-bound and not even being able to work. And there was no time to process any of that because in it I was still trying to figure out what the heck was wrong with me. And so I really experienced this complete loss of self. I was lost. That is the best way to explain it. I didn’t know who I was, what I wanted, was this going to be my life forever? And I found in working through it, especially at the young age that I was in, there really weren’t any resources for me to kind of digest any of this. How do I navigate relationships? I’m a flaky friend now. I’m not going to show up to everything all the time. I went through this kind of reckoning and this blowing up of every world of mine — personal friendships, family relationships, intimate relationships — like everything was just a mess going through this. And I didn’t have any outlet. There were no books kind of like trying to help me guide me through this. And so journaling was just like a huge, huge safe space for me to just get it all out. Not even just from like a symptom profile type of thing, but just my thoughts, like where I’m at with this and how I feel about all of it. And over the pandemic, I decided to reread the journal that I had started at the beginning of my endo diagnosis. And the journal spanned from 2015 to that day. I kept it over all these years and I was just so blown away reading through everything that I had lived through and the ups and downs of it all, and just was so encouraged and empowered by like my own strength and looking back. And I also saw some things looking and saying, oh, this is a theme that after six years is still an issue for me, like I’m still struggling with self-worth and identity around my illness. So I wanted to create a tool that kind of helped people work through that side of things. Like, we have the physical and there’s so many resources for that — specialists and doctors — but we don’t have a ton for the psychosocial, psychological side of dealing with a really devastating disease. And I just wanted it to be something that felt encouraging but real. I didn’t want to sugarcoat what this life is like, but I wanted you to feel like you had someone who you were walking through with that understood. So I kind of just gently guide you through the process. I have some anecdotes of my own of things I went through, just to kind of see yourself in parts of my story. And so it’s kind of just this collection of journal prompts, some affirmations that are helpful for people going through hard physical and mental times, and then some experiences of things that I went through. And the ultimate goal is to just lead the reader to a place where they acknowledge their illness as a part of their story, but not the entire story. Because it’s so consuming, it’s all consuming in the way it takes over, but there’s still so much more to us outside of these diagnoses. And that’s really the goal of it — to understand you’re not alone in it and that there is more to you besides just, I’m someone with endometriosis, or insert whatever other diagnosis.

Lisa Hendrickson-Jack: That’s an incredible resource and so important. And it made me think of the part of your story where you shared that really the turning point came when you reached out to a group of women who had had a similar experience. And this is why, as long as I have access to a microphone and the internet, I continue to do this podcast, because ultimately, this is how we heal. When we’re dealing with these issues of menstrual cycle — in your case, endo — often it’s when we connect with other women who’ve had similar experiences that we get that wisdom, that experience, and the things that we need to overcome it. And ironically, those women in the group weren’t surgeons. They weren’t specialists. I say it every day: I owe my life to strangers on the internet because I don’t know where I would have been if they hadn’t shared their experiences and their stories. So what you’re doing is literally life-changing, quite literally life-changing.

And what I was going to say is, we often have this — we really prioritize in our culture: doctors, surgeons, degrees. This person has six degrees. Well, I have ten. I went to school for 20 years. I have a lot of respect for doctors. But this episode hopefully is a reminder that even with all the degrees and expertise, they don’t know everything. And we have to always — it’s hard and it’s not fair — but your story really screams to me: we always have to still take responsibility for our care to the degree we can. We have to research the drugs that they tell us to go on. We really do. It’s not fair. We shouldn’t have to. They should tell us. They should sit us down. They should take us through the side effect profile. But I’ve heard enough stories and you’ve heard enough stories to know that that doesn’t always happen. We have to do it. It’s not fair. It’s not right. They should do it. It’s obviously there’s something wrong with the system.

Jenneh Rishe: Yeah, you can’t even blame the individual doctors because it’s a systemic issue.

Lisa Hendrickson-Jack: So without me going too far on that tangent, I just want to thank you so much for sharing your story. And before we go, please let us know where you are on the socials, the name of the book, your website, all of the places so that the listeners can connect with you.

Jenneh Rishe: Yeah, sure. So on socials, on Instagram, my personal is lifeabove_illness, and then I have a nonprofit that focuses on endometriosis awareness, education, and trying to increase research funding called The Endometriosis Coalition. We do events both virtual and in-person, and we have support groups and lots of awareness initiatives, so just follow us along to see what we’re up to there. And then my book is called Part of You, Not All of You: Shared Wisdom and Guided Journaling for Life with Chronic Illness, and it is available everywhere books are sold.

Lisa Hendrickson-Jack: Awesome. I’ll make sure to include all of those links. Thank you again so much for being on the show.

Jenneh Rishe: Thanks for having me.