Atypical Endometriosis Symptoms You Shouldn’t Ignore (Episode 613)

Full Transcript: Episode 613

Lisa: Over the next two weeks, we are going to dive into endometriosis. I have two really important episodes lined up for you. In today’s episode, I’m sharing my interview with Jenneh Rishe. And her story is very compelling.

Her symptoms were not typical, and it took her quite some time to get a positive diagnosis. And in this episode, we really get into some of the most common challenges with both diagnosing and getting treatment for endometriosis, especially when the presentation is not textbook.

Before we jump into the episode, let me tell you a little bit more about Jenneh. Jenneh 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 is 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*, Jenneh 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 today’s episode with Jenneh.

Lisa: I’m really excited to be here today with Jenneh Rishe. Welcome to the show.

Jenneh: Thank you so much for having me.

Lisa: 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, because we’re recording this in the future, but at the time that we’re recording this, I’ve recently released a period pain series episode. And I had shared an episode with Sasha 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 did they have to go through this stuff, right?

Jenneh: Yeah.

Lisa: I’m really looking forward to hearing your experience and your story and what prompted you to write your books. So maybe let’s just start there. You can let us know a little bit about your history. I know this isn’t a reality series episode, but one of the questions I often ask on those episodes is, 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 take us into your experience.

Jenneh: Yeah, sure. People are usually surprised to hear that my periods were always really normal. As a teenager, they were short, sweet, not too heavy, not very painful. And I would say 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 once I started going on that, my period was almost like non-existent. I had those fake bleed days when I was on the inactive pills. And that was really it.

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 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. 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.”

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. It was like over a course of about two years of the symptoms just kind of slowly building on one another.

And the whole time I’m on one birth control, so that idea of birth control suppressing endometriosis, it’s 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: Wow, 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, 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. 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.

Take us a little bit more deeply into this, because what you’re saying is that your particular endo, the lesions, were affecting your diaphragm. They were affecting you in a different way. I’m curious, you said your periods are pretty typical, pretty normal. Were they painful at all or were they uncomfortable? And then you shared about the symptoms, but I kind of want to just ask more. I kind of want more of the picture of what it felt like, because you said stomach pain, chest pain, and shortness of breath, but it was cyclical. I’d love for you to hang out there a little bit and really paint us a picture of what this was like for you.

Jenneh: Yeah. 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. 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.

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 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. I would say about six days out of every month that I would experience this pain. But each month, it kept coming back.

When I went to my first gynecologist and said, hey, I’m noticing this every month for the last four months or so, I just kind of got this like, “I don’t think it’s related, keep an eye on it” kind of thing.

Then I kind of just lived with that sharp pain coming before my period, hanging around a couple days later for another 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 was the first time I had mentioned the word or heard the word endometriosis. And her explanation was just kind of like the flu. Like, “Oh, this is what it is. And we treat it with pain medication and birth control. And that’s just what it is. We do our best to keep you comfortable.” 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. I didn’t take it as being all that serious.

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. I’m just being flooded with hormones.

And the first pill’s not helping. I try it for three months, not getting any improvement. Then we switch to another pill for three months. I’m not getting an improvement. We do that about four times. Over this time, my pain’s getting worse and it’s becoming not just cyclical. Now I’m feeling uncomfortable most days. 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 — just chatting with me and going through all my medications. He’s like, “You’re taking a lot of ibuprofen. Why are you taking so much ibuprofen?” And I explained to him this weird pain and then thinking I might have endometriosis. And he goes, “Well, you know, maybe we should actually 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.”

This is almost a year into this trialing and erring 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, that was the one that brought it up. 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: Well, the listeners can’t see my face, but you can. I feel like there’s all these points in time where my blood’s boiling. But let me work through it.

You’ve given us a good picture of your birth control history in particular, but I feel like I’d just like you to take us through that. Was the IUD the first type of — and I’m assuming it was a hormonal IUD that you were on?

Jenneh: No. So the first birth control I ever did was a combination pill. Yes, 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 Ortho Evra. And I was on that for a few years, but then they come back saying that that one was causing a lot of blood clot issues in young women. So my doctor switched me to the pill.

Lisa: And that was like 18 and over?

Jenneh: Yeah, 18 and over. Through college, I was on the patch.

Lisa: So you were on the patch and they took you off because of blood clot issues.

Jenneh: And put me on the pill. The idea, I think, was the patch was such a high, continuous amount of hormone. They were seeing more issues with it than with pills.

Lisa: Do you know which pill?

Jenneh: Yes, which is for anyone who doesn’t know, just look up Yaz lawsuits and you’ll get an education.

Lisa: Yeah, knock on wood, I didn’t have any issues with that.

Jenneh: 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. I got what was called the Skyla IUD at the time. It was a lower dose version of the Mirena and it was a smaller device. 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 rolling around on my floor when I got home and I’m not even exaggerating — the pain was so bad and I don’t feel like anyone prepared me for that at all.

Lisa: I’ve been doing what I call my Pill Reality series for many years and what I learned kind of early on is when I interviewed women who’ve used the IUD, I need to ask them about that in particular because I wasn’t really aware.

For me, I was always terrified of the IUD. There’s certain things — I’m kind of a weirdo in that sense. There’s just certain things that I’m like, I just can’t get my head around. And that was one of them because I was like, you’re not putting anything in there. And I had a history of painful periods. For me, anything that could possibly make that worse, I was like, nope.

But I didn’t really realize it until I started interviewing women. I’m not sure how much conversation you’ve had on this, but the percentage is pretty high. 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. Quickly take us through what that was like and if you were offered anything for it.

Jenneh: 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 ripping the steering wheel at a red light, just 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 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 or post, any of it.

Lisa: Just as 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. I’ve heard it very rarely. If you have a doctor that’s offering you pain medication, that’s a good doctor you got there. But you can request something like that ahead of time. Your doctor might try to minimize that, but you can request it.

And I often hear women say they’re told to go 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. 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. 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, moving forward. One of the things that struck me — I know I’m going real detailed and granular but I feel like it’s important — 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. What do you make of that? Now kind of knowing what you know, do you feel like it was related?

Jenneh: Now knowing what I know about endometriosis and deep diving and getting 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 gave the endo time to kind of do whatever it wanted without that constant suppression from the combined birth control pill.

Lisa: Yeah, that’s interesting. That makes sense. I mean, I think what women are commonly told 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. It’s just going to stay in the uterus. Is it? Are you sure about that?

Jenneh: Yeah. So why is my hair falling out? My libido’s a little different here. Something obviously got out of my uterus.

Lisa: Right. If I put mango flavor lotion on my skin, it goes through my circulatory system.

But I think that’s a really interesting point because by that time you had been on birth control for about eight years. And birth control primarily does suppress ovulation, meaning that most women don’t ovulate at all if they’re taking it correctly, especially on the combined hormonal methods. And then with the IUD, there’s a percentage of women who do continue to ovulate and continue to have somewhat of a cycle. And the primary mode of action goes from ovulation suppression to things like preventing the thin uterine lining and closing the cervix with the mucus plug.

That is a very interesting possibility because I thought it was interesting that somehow when you transitioned to the IUD, that’s when you started to feel those other painful symptoms.

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? 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 Jenneh?

Jenneh: 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 and was very nationally acclaimed and well known. I’m not going to be thinking, oh, let me make sure they’re doing the right thing for me. I don’t know anything about this disease. I don’t know anything about anything gynecology related. My history as a nurse was in oncology and cancer. This was so outside of my realm of specialties.

And when I look back, I’m like, how did you just agree to something like that? Well, why wouldn’t I? 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. That idea of questioning it right out the bat — what would I question? I didn’t even know what to ask.

Lisa: Well, and I would imagine that there are women in a similar situation who would find the relief. But 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 like, what do you mean you were on the IUD already and you were given a pill also? What does that do to you?

I don’t know, because in your case, you said the symptoms worsened. And we don’t know — maybe in some doses it lowers them, but if you do higher doses, it doesn’t. We don’t know. 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 me to suppress it with the pill, maybe we should take the IUD out.

Jenneh: Absolutely.

Lisa: And then do that.

Jenneh: Completely. Yes.

Lisa: If we could go back in time, that’s what the plan would have been. Absolutely.

The other thing I wanted to touch on was your experience with — this experiment went on for, you said about a year, where you were put on one pill while you still have the IUD inserted, and then it didn’t work, and you were kind of switching. And it took that long. It took quite a while for you to get a doctor to take you seriously. And it was really helpful for that doctor to tell you about endometriosis.

It’s interesting, though, that what happened in your experience was that she was like, hey, you know about endo? There’s this thing called endo. Let’s treat you without diagnosing you. That’s really interesting that it was your primary care provider that was like, why don’t we see if you really have endo?

And that’s what I hear from people — it is 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: And I think my lucky stars that my primary suggested that because how long would that have gone on? I was either getting told, well, you probably don’t have endo if none of these things are working.

It could go either way where I’m just stuck on these drugs because they’re assuming that’s what I have, or I’m being told, this likely isn’t what you have because this is what usually works and this isn’t working for you, which a lot of people are told. Like, this is the cocktail that works. And if it’s not working for you, then this is probably something else. It’s probably not endometriosis — without doing any type of diagnostic surgery to be able to say that.

And that’s what’s confusing to me. Of course, surgery is invasive and everyone wants to avoid that 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. I want to know what’s going on inside of me, not just guess based on hormones and response to medication.

Lisa: Yeah, it’s very troubling to me to hear that because I had mentioned the previous interview that I recorded with Sasha. 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. She was in the classic endo camp. And they would give her these drugs — the morphine, the opiate, the heaviest stuff — and it wouldn’t necessarily help. And they said similar to you, well, if you’re not responding to the medication, maybe it’s in your head, not saying it fully to her face but insinuating it.

And the irony is that I like to go back to the definitions of things. If you look up endometriosis, if you’re a nerd and you want to go to Google Scholar and 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.”

Jenneh: Exactly.

Lisa: Where did this come from? Are you guys just winging it over here? It’s wild. 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 not use that. Let’s just see if you respond to the birth control. And if you don’t —

And ironically, if you were to speak to women who actually have endo, or maybe let’s say more holistic care providers who provide a different type of approach that’s potentially more at reducing inflammation, that not responding to the birth control — having been on birth control and it not helping — is the sign that it’s possibly endo, right? It’s kind of the opposite. In reality, the opposite is true. If you have pain that’s so bad that you take the high-level opiate stuff and it doesn’t do anything, it makes it more likely that it is endo.

I feel like this whole thing is very strange. 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.

In your case then, maybe talk a little bit about that. Because now that you’ve gone through this, you’ve also, I’m sure, heard so many different stories from so many women with endo. Talk to us a little bit about how challenging it is for women to be taken seriously, to get care. And what ultimately happened? Did you actually get the surgery and get the full diagnosis? And if so, how did that change your course of treatment?

Jenneh: Yeah. 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 are and why it was so difficult.

I had the 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 they existed. 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, endo being this strange cellular disease, oncologists dealing with tumors may be the best person to be able to remove something like that.

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. I’m like, wonderful, this is very optimistic going into this surgery.

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.

After that biopsy came back positive, then my gynecologist felt that the best next option was to go on Lupron.

Lisa: Your eyes…

Jenneh: Which, again, one of those things where if we could write this story over again, go back in time, I would have said, heck no. But at this time —

Lisa: Maybe briefly share what Lupron is.

Jenneh: Sure. It’s primarily used for — yeah, so Lupron was originally FDA approved to treat men with prostate cancer. One, it was FDA-approved for prostate cancer. Two, I won’t go too far into this, but 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 max a year. It’s a short-term solution with a lot of potential side effects, the biggest ones being bone loss, suicidal ideation — permanent bone loss, 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. I will admit that. 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. I knew what I was signing up for, but I wasn’t consented from the doctor putting me on it. He was just like, here you go. You come every three months and we’ll see how it goes. He didn’t sit me down and tell me 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. At this point, I’m in pain all the time and just like your friend, no pain medication is touching it. I’m still working so I can’t take narcotics during the day. I’m just trying to get by until I can get home and take things that may help and usually don’t.

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 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 on 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 isn’t 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, like, this is all they do. And I found my way to one.

But before I found my way to one, I got progressively worse. I was so sick. I couldn’t work anymore. I went out on disability for an entire year. We’re doing every test you can think of to try to explain why is my breathing getting worse, why am I having this chest pain. My lungs are being looked at. My heart’s being looked at.

And in my mind, I’m like, well, we know I have endo. We have that biopsy. But 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 know — 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 evidence-based education and a specialist list of surgeons who actually know endometriosis well.

And it was going through that group, I found other women who were having the same chest symptoms that I had. Because before this, I didn’t talk to anybody. Everyone that I talked to or heard of with endo, it was always pelvic pain as their main symptom. It was so refreshing to find other women who were having the same breathing and chest issues. And they were all going to this 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 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 well. And I think I can help you.

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 many 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.

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 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. 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 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, my uterosacral ligaments, on my bladder, my pelvic sidewall. 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 I get so much worse in a year’s time? 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 area you could. It was misdiagnosis. It was mistreatment. It was delayed diagnosis, wrong surgery.

And I was just like, oh, wow, 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.

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. 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.

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 bat. That’s a whole lot. But yeah, that first surgery was just the beginning of a whole other journey.

Lisa: Yeah. I mean, obviously this is 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, just in general, whether it’s period issues or whatever, I generally suggest it’s good to have someone who specializes. 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 that, yeah, we need a doctor. Yeah, you 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. And you have more of that whole body care kind of 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 — even in your case with the testing, that is really disturbing. Even to 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. 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’re not even necessarily familiar with it.

Jenneh: That’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 — look at, and we say, this is clearly a specialty that is above the area of expertise for a general GYN.

Lisa: Why isn’t it?

Jenneh: And a general surgeon as well.

Lisa: Exactly. Why isn’t it treated that way as a subspecialty? That’s our biggest desire, to acknowledge it as the specialty that it is.

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 — I mean, we have a few minutes left. I might have you back again on the show another time to flesh this out more. But share with us a little bit about your book, because now, given your experience — traumatic — I feel like 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, and a lot of mistakes on the way that you didn’t know. I would say that they weren’t your mistakes. You were doing the best that you could, and you were trusting the expertise of the practitioners.

It’s kind of hard to sum it up, but 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 these symptoms, especially in your case, being that your symptoms were atypical. What kinds of things would you want the listeners to know?

Jenneh: Yeah, sure. 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, killing and crushing every goal, 20-something-year-old, to being bedbound 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.

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? Is this what it was going to look like now? And what does that mean if pain is the story now?

And I found in working through it, especially at the young age that I was, 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. But if I cancel five minutes before, how are you going to feel about that? I went through this reckoning and this blowing up of every world — my personal friendships, family relationships, and intimate relationships. Everything was just a mess going through this.

And I didn’t have any outlet. There were no books trying to help me guide me through this. And journaling was just a huge safe space for me to just get it all out — and not even just from a symptom profile type of thing because that’s really important to do, but just my thoughts, 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 my own strength.

And in looking back, where I was six years ago, or even in some things looking and saying, oh, this is a theme that after six years is still an issue for me. I’m still struggling with self-worth and identity around my illness.

I wanted to create a tool that kind of helped people work through that side of things. 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 was real. I didn’t want to sugarcoat what this life is like, but I wanted you to feel like you had someone who you’re walking through it with that understood.

I kind of gently guide you through the process. I have some anecdotes of my own, of things I went through, just so you can see yourself in parts of my story. It’s 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 is 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: 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 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 the 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.

Jenneh: 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. What you’re doing is literally life-changing, quite literally life-changing.

Lisa: Well, similar to what you’re doing. And we often have this — we really prioritize in our society 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. There’s obviously something wrong with the system. You can’t even blame the individual because it’s a systemic issue.

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. Again, the name of the book and your website, all of the places so that the listeners can connect with you.

Jenneh: Yeah, sure. On socials, on Instagram, my personal is @life_above_illness. And then I have a nonprofit that is 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: Awesome. Well, I’ll make sure to include all of those links. Thank you again so much for being on the show.

Jenneh: Thanks for having me.

Lisa: Thank you for listening. If you enjoyed today’s show, please share it with a friend. You’ll find the show notes page over at fertilityfriday.com/613.

I hope that you enjoyed today’s interview with Jenneh. My mind in many ways was blown after this conversation, just thinking about how many women suffer for how long, given the lack of information about endometriosis.

Certainly, there are some key takeaways here, one of which is that if you suspect that you have endometriosis or you have symptoms similar to what Jenneh described, or even more of the typical symptoms, it’s really important to search for someone who specializes in endometriosis. And I can say that about basically any condition. What I’ve learned after over a decade of podcasting is that even highly qualified professionals, when they’re graduating, they’re often graduating as generalists in the sense that they’re not fully specialized in one area or another.

I would say that is one of the biggest takeaways from today’s episode. If you suspect you have endometriosis, that’s why you’re tuning in. If you’re a practitioner working with clients, it’s so important not to send clients where you suspect they have a specific issue to general providers, regardless of how much education that they have. And it’s completely fair game as the patient to be asking some questions and doing some research and ideally working with someone who does this all day long.

With that said, next week I will be sharing my interview with Dr. Ken Senervo. And you will get even deeper into why it’s so important for you to work with someone who specializes, especially if you suspect you have a condition like endometriosis. The level of knowledge and support that you get working with someone who does this all day long, all day every day, is completely different than someone who does not do this all the time and it just makes up part of what they do. I would say especially with endometriosis because of its inherent complexities.

I hope that you enjoyed today’s episode with Jenneh. I hope that you got a lot out of it and certainly took some additional key takeaways even beyond what I mentioned. And with that said, I hope you have a wonderful weekend, whenever you’re tuning into the show. And of course, as always, until next time, be well and happy charting.