In an effort to preserve this guest’s privacy, we are using an alias in this episode – an Uninvisible first! Ilene is an award-winning 6th-grade elementary school teacher. She is also a survivor of rape, “endometrial symptoms” (aka, undiagnosed endometriosis – chronic pain that was only compounded by her sexual assault), and hypothyroidism. She joins Lauren for a no-holds-barred conversation about her how her health and physical experiences have affected her emotional world, and informed the woman she is today. A note: while rape and sexual assault are not traditionally categorized as “invisible illnesses”, the emotional scarring these experiences can leave behind is most certainly a mental health issue – and a social issue, at that. We hope that by allowing Ilene to share her story, we can provide a platform of encouragement for survivors to speak their truth – whether that means they heal by sharing their stories, or heal by choosing not to. You are with us, and we are with you. We stand together.
Listen in as Ilene shares…
- that never being officially diagnosed with endometriosis made her mentally tough: if doctors wouldn’t legitimize her pain, she wouldn’t, either – and she has taught herself, for better or for worse, to “push through”
- that she learned she didn’t have a “normal” reproductive system because she got her period and was spotting very early
- that she was diagnosed with hypothyroidism at the young age of 14, because she exhibited extreme fatigue
- that she was put on birth control to regulate her periods, but quickly taken off it because it did not interact well with her thyroid medication – and luckily, her doctor spotted the issue (a risk of potential stroke)
- that she had a cervical infection at 21 that gave her acidic discharge – the kind that burned through her underwear (this is not uncommon, and can be brought on by stress)
- that her cervical infection and its subsequent doctor’s appointment allowed her doctor to find a cyst on her cervix which she removed
- that she was raped the day she had the cyst on her cervix removed – after sharing with her rapist (a then-boyfriend) that she was not to have sex while the removal area healed
- that, because of shame and embarrassment, she didn’t tell her doctor she had been raped when she went back the next day to have her cervix checked
- that, looking back on her story, she was told over and over again by colleagues and medical professionals that she should be able to function normally with her painful periods
- that, in grad school, she started having fainting spells associated with a regrowth of her cervical cyst and another cervical infection
- how long it took her to acknowledge her experience with her former partner as rape
- how meal and bathroom breaks as an elementary school teacher create a lot of inconveniences with regard to female reproductive system management, especially for people with pain and heavy bleeding (Ilene would carry extra pants and underwear, and would bleed through multiple pads AND tampons, as well as clothing) – while managing young children
- that a doctor finally told her she could elect to have an invasive surgery to officially determine an endometriosis diagnosis – but Ilene opted out of the surgery, instead telling herself she didn’t have endometriosis, and was “not sick”
- that she continued to have cervical cyst regrowth over the scar tissue caused by her rape – and she had to have the cyst removed 20+ times
- that she dove into family history to understand her reproductive system
- that her paternal aunt had once been diagnosed with a condition called “swampy uterus” – a reflection of how women are so often misunderstood by the medical system
- that getting an IUD was a major factor in her physical recovery (once she got past the concern of hormone disruption); before that, it was regular monitoring of her hormone levels and fertility, which allowed her doctors to customize estrogen and progesterone shots. In addition, she had a light D&C (dilation & curettage), which is a procedure typically used to remove tissue from the uterus during or after a miscarriage or abortion, or to treat fibroids and polyps – and this scraping of her uterine lining was immensely helpful in reducing her symptoms and pain
- that she has resisted the need for a hysterectomy because she wants to have children
- that meeting someone else with endometriosis while on her journey to wellness helped to legitimize her own symptoms – she suddenly understood it was all real
- that she channeled much of her rage at her rapist into blame for the pain in her body
- her mantra: “You are unbreakable”
- the moment when she lost her sh*t over the remarks of a male doctor-in-training – and her female nurse defended her
- that her mother was also raped, and at knifepoint – and so she felt it was her duty to conceal the truth of her circumstances to her mother for a long time
- why she loves acupuncture
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Lauren: Thank you so much for joining me today! I’m joined by the lovely Ilene, who is an endometriosis and hypothyroidism survivor — as well as a rape survivor. So we're going to talk about all of this, because it's all very interconnected and she has an incredible story. So Ilene, can you start by telling us when you first started having symptoms, especially with regard to endometriosis?
Ilene: Yeah, so ...
... endometriosis is an interesting diagnosis or disease … because I was never officially given the diagnosis of endometriosis. So, you know, talk about me being, like, ‘I'm not really sick, I can still work through all this!’
But I got my period, officially, when I was about 10 — which, nowadays actually, it's interesting, is not that big of a deal. But in the early ‘90s, that was an earlier time for a young girl to start bleeding. I started spotting between the ages of eight and 10. So my mom, who's a wonderful person and really open to all this stuff, said, “You know, this is a little early.” So that was my first sign: Oh, I don't have a normal reproductive system. So then I had really bad periods all through high school. And I had a wonderful doctor.
I was diagnosed with hypothyroid when I was 14.
Lauren: Which is pretty young to be diagnosed with hypothyropid.
Ilene: Pretty young. I was sleeping about 18 hours a day. So it was pretty clear; this is what's happening. If I was at home, I was asleep. I would wake up to go to school. That happened for about a week or so. And my mom said, "Well, we're going to fix this."
Lauren: They didn’t think at any point that it was Epstein-Barr, or mono or anything?
Ilene: No, I think they tested me for that. They must have, because they tested me for thyroid right away as well, and I came in with low level.
Lauren: I imagine it's also because you have a family predisposition.
Ilene: Well, my dad has it. But he didn't get diagnosed with it until after I did. But I had a really cool doctor. I was living in Santa Cruz with my lesbian mother, and she was kind of a hippie, alternative doctor. She practiced medicine alternatively.
Lauren: She was probably one of the early integrative medicine practitioners.
Ilene: Probably, yes. And my mom still goes to see her because she still lives there. She was awesome. So I had really heavy periods all through high school; vomiting, passing out.
Lauren: And eventually someone says it’s time to go on birth control!
Ilene: So yes, eventually someone said it was time to go on birth control. So I went on birth control when I was 15 or 16.
Lauren: And for people who are listening, this is something that happens very frequently, particularly with teenage girls. If you have a really painful period or something really extreme, generally birth control is prescribed to be the solution to the problem because it regulates your hormones.
Ilene: Right. I was on the Pill, and they tried doing the Pill where I would take it for three months straight. And then I would take the placebo pill, so I wouldn't have my period for three months. And long story short … that messed with my hormones so much.
I went on birth control when I was about 16, but then was on it for about a year, and then I got really terrible … what ended up being migraine auras. But what happened was, half of my face would go numb — so I thought I was having a stroke. Then the numbness would travel, and my right arm would go numb, then my left arm would go numb, then my right foot. It was really scary.
Lauren: Like Bell’s palsy.
Ilene: Exactly. If the numbness was in my arm, I could smile properly. If the numbness was in my leg, I could use my hand properly. So it was weird. Anyway, there was one episode when I got taken to the ER; people thought I was having a stroke.
And then my really great doctor, the one I had before, did a lot of research and she realized that with the thyroid medication I was on, there may be this complication with birth control — and it could lead to me having a stroke.
So she took me off the birth control right away, which I was very pro; I think I was in college at that point. So I went off birth control. And then, here I was, with just extreme heavy periods.
Lauren: And pain, I imagine.
Ilene: And pain, intense pain.
I learned at a young age to be mentally stronger than the pain.
I knew that it was going to be over eventually. And so I do think that it's a good thing actually, that I got so mentally strong, because it did help me. But at the same time, it also messed with my head … because I was just having my period and every other woman in the world has their period … and every other woman in the world goes to work with it and can continue to work out with their period and do things like that. So I just kind of powered through. And then right after college … I was around 21 … and I’d just had these sh*tty periods for a long time, and I went to my really great doctor — same doctor in Santa Cruz — and she said, “You know, we should probably test you.” I had a cervical infection.
How I could tell I had a cervical infection … we're just jumping right in now! … my discharge was so acidic that it was literally burning holes in my underwear.
Ilene: I swear! Here I am, 21, I'm relatively healthy. And I was, like, ‘There wasn't a hole in these underwear!!’
Lauren: I shouldn’t laugh!
Ilene: Oh, totally. That was bananas to me!
Lauren: Like kryptonite discharge!
Ilene: It didn’t go through my jeans, thank God! But geez, it was … I don’t even remember … like, throughout one whole day or maybe two. I don't know. If you ever have holes burning in your underwear, go see your doctor, please!! It's probably just a cervical infection, you'll be fine. This was also the time that I started realizing, ‘Oh, I'm old enough to make my own doctor's appointments.’ That was a turning point for me. So I go and make a doctor's appointment, and my doctor said, “Okay, your cervix is definitely infected, which is not abnormal; that can happen with stress.” Happens to my body a lot with stress.
People's bodies deal with stress very differently; mine affects my cervix.
She also said, “You also have a very small cyst.” It was a fluid-filled cyst. And she said, “I'm going to remove it.”
Lauren: Where was it, on your cervix?
Ilene: It was on my cervix, yeah. That it was an outpatient procedure. It was not going to be a big deal. I said, Okay. I drove myself there. When I think about it, I should have brought my mom. I should have brought someone with me. But I had this newfound independence to my disease almost, where I was, like, ‘I have insurance and I can make my own doctor's appointments … come hell or high water.’ “Okay, take whatever it is you need out.”
Looking back on my story, I realized over and over and over again … I was told so many times by society that I should just be able to live with my period. It should not slow me down. I should just shove a tampon up there and go ride bikes — because that's what everybody does in the commercials!
And so, I was, like, “Okay, that's fine. Yeah, go ahead and remove it.”
Lauren: You know, also … because I wrote an article about this ages ago for Health.com … there are actually certain parts of Asia, I think it's in Japan … I'll post the link to the [other] article with this episode … but there are businesses that are starting to actually create programs for women so that they can take time off during their period.
Ilene: We need to live there!
Lauren: I know! It’s such a huge step in the right direction, towards an understanding that what our bodies are going through is so different, and our pain tolerance is so much higher because of it, and our bullsh*t tolerance is also higher!
Ilene: Oh, totally, totally!
Lauren: But also, I say that as someone who's had relatively normal periods. Mine have been painful, but I don't even know what the next level ... someone with endometriosis ... what that’s like. You need to tell us.
Ilene: So the doctor removes this little cyst. It's on the end of my cervix. And so she just goes up. She doesn't need make a cut. But she ends up throwing a stitch in there because it was bleeding a little bit. Totally fine. I go home. I was living at home, it was the year between college and grad school. I didn’t tell my mom about it; they may not have even been around. They may have been out of town for a few days, or whatever. I was like, ‘All right, I'm cool.’ And I was dating this guy at the time. And the doctor told me, “You may not have sex for two weeks.” I was like, ‘Okay, no problem.’ I was a virgin at the time. So, I go and I saw the guy and I told him, "Hey, so this is what happened to me and I'm not allowed to have sex." And he said, “Okay.” But he ended up raping me that day.
Lauren: Oh, my God.
Ilene: So it was, again, one of those situations where … I didn't really think I was sick. But then here I am, almost physically unable to stand because he tore open the stitch. So I go back to my doctor the next day … don’t worry, I broke up with the guy immediately … I go to my doctor almost the next day, whenever she can see me. And I remember thinking to myself, I am going to have to tell her what happened.
But there was so much embarrassment. I was 21, which is pretty young still. Now, it would have been, “That motherf*cker raped me and we're gonna get him in trouble!” But I was so embarrassed, that when I went to the doctor, she said, “Wait, what happened here??” And I told her, “I didn't listen to your advice. And I had sex.”
Lauren: You didn’t tell her you were raped.
Ilene: Correct. So, then, I went to grad school. And I had an episode where I fainted three times in a row, in a week. And so I ended up in the hospital for a couple of days and I was thinking, ‘This is it. They're going to find a brain tumor. Why am I just randomly just passing out?’ What had happened was my cervix had gotten infected again. And that same cyst had grown back on that same spot. I'm trying to think about where I was location-wise, because I can remember all the doctors’ offices very well. But somehow the numbers of how old I was just totally escape me. So I moved back to the Bay Area, and I was teaching for my very first year; I’m a sixth grade middle school teacher. And all of a sudden, my periods get really bad - super intense.
When the cramps hit me … I've never had a baby … but my doctors have described it as “You're going to be fine when you have a kid; this is how intense that your cramping is.” I would actually double over at the knees, the very first time I would have any kind of incident. Like a contraction.
Lauren: A contraction! And was this lined up with the fainting?
Ilene: No, this is a little bit later.
Lauren: But you got tested after the fainting; you had an MRI or something?
Ilene: Yes. I had an MRI; I had a bunch of tests done. I’m sorry. Thank you for bringing me back. They couldn't find anything wrong with me. The only thing they could find wrong with me was this cervical infection. And this one little cyst, that was in the exact same spot as it was before. Because it never healed properly the first time.
Lauren: And also I'm having this realization — and this is sort of taking us back a step, too, and we’ll get back into this thing with your periods getting heavier and more painful all of a sudden — but with your reaction to the rape, as well - it's really interesting to me, because as women, we’re taught to sublimate everything to do with our reproductive system from the time we’re teenagers, anyway … But you were already doing that on another level, in terms of your pain and just getting on with things. It would seem to be a completely normal reaction in the sense that, from what I understand, a lot of people who've been through those experiences are too embarrassed to press charges or tell people, or whatever.
Ilene: I stopped the incident. It definitely happened, but he didn't get all the way finished, and so once again I was, like …
I don't like that word. That's not what happened to me. There are people who have had that happen at gunpoint and knifepoint. And that's not my story. So once again, my brain is like … you can't even say that that's the case. You have to use a different word; you don't speak of it at all.
It took me a little bit to go back to the doctor, even though, had I known what I know now, I would have gone right away. But I didn’t, because of that exact reason. There were a lot of levels of secrecy that I felt I needed to keep. The thing about that is, that I'm also a teacher, and we are given a bathroom break every two-and-a-half hours, and you get 10 minutes, and you have to eat and use the bathroom at that time. And talk to children. So there's this whole other level of … not really mistreatment … but, once again, I couldn't really be exceptionally truthful at my workplace about what was going on. So it's my first year teaching, and my periods get really heavy. And I know that …Okay, I'm going to have to go in, I'm gonna have to figure this out. So I went in, and I talked to my doctor, and my doctor looked at my cervix, and she said, “There's this really weird scar tissue spot on your cervix.” And I said, “Oh, I can tell you what that was from.” I finally trusted this doctor; I don't know ... I feel like I was old enough. And I also was so debilitated by my period every month, that I needed some kind of answer.
Lauren: And when you say that your periods were heavy, give us a relative comparison.
Ilene: I had emergency pants and underwear in my car, and my classroom — sometimes in my purse — because I could feel blood at my ankle. It was like I was bleeding out just all of a sudden. I wasn't. It would happen. I would stand up, and even with using two tampons at once, which is very uncomfortable, and a pad, I would bleed through all of that. As we keep talking about this, it's so interesting that you bring that up because there were so many levels of me needing to keep private about this.
Because I was also a first year teacher fighting to keep tenure at this really good school. I would be teaching 30 sixth-graders, and I'd stand up and be, like, ‘Oh shit, there's blood on my chair.’ I have to say, I basically got really good at acting, to be honest with you. And acting like I was well.
Lauren: Which can be a great thing, but it can also be a thing that makes you push back. All of the focus is on your actual health.
Ilene: 100%. Okay, so the cyst that was growing on my cervix, the second time, gets removed. The doctor says there's a lot of scar tissue here. And she's wondering if it's scar tissue that is from endometriosis.
Endometriosis is where your uterine lining, endometrial lining, grows in other places — besides where it’s supposed to.
Lauren: Because it’s fusing.
Ilene: Yes, it can cause fusing of the organs because it's like this tissue where, literally, your life could start! It's this very fertile tissue that's right there, and it can fuse organs together. So mine was only happening at the end of my cervix. Which honestly … I've heard so many stories … I'm very lucky that that's the case. But to get a diagnosis of endometriosis … what my doctor told me, and I actually think she may have been wrong … but you don't really tell doctors they're wrong when you're that age, I don't know …
Lauren: Well, that's a cultural thing. We're taught that what the doctor says is right.
Ilene: Yes, and that's it. What did the doctor tell you to do? Okay, well, then, there we are. I kind of did my own research. And I said, ‘You know, I did get periods really young. And I did spot super early, and there were all of these kinds of factors’ … then I went to her and I said, “Do you think maybe this could be the case?" And, I don't know, because she was a great Ob/Gyn. She was the head of the department that I was going to in Kaiser; they just kind of moved me up because no one could really figure me out.
So, she just basically told me that, “No, we have to do this very invasive surgery to get you a diagnosis of endometriosis.” So I was, like, "Okay, well, I don't want that. So, then, I don't have it, right?" That was so clearly in my mind. Okay, then once again, I'm not sick, and I can't act sick.
So then, they removed the cyst that was growing on top of scar tissue, which was from the rape. And that cyst kept growing back, and it would grow quicker, and it would grow bigger — and they would remove it every time. Every time we found it. But one time, it popped. It's probably the most pain I’ve ever been in in my life. I was living by myself and I woke up and I was, like, ‘Okay, either I'm having a baby and I didn't know it for nine whole months, right? What the hell! Or there's something seriously wrong.’ So once again, this is me being too strong. I drove myself to the doctor’s. And I just kind of sat there thinking, someone will help me. I didn't even have an appointment; I just drove myself there. But in my mind, I didn't need to go to the ER, because I wasn't sick enough to go to the ER. In my mind, that wasn’t where I should go. They saw me right away - that was great. But they started cauterizing when they would scrape the cyst off, instead of putting a stitch in. I'm not sure if that was just a ‘me’ thing, or if the technology and the understanding got better. Because after that, as I talked to more people — people in my family … I started doing a little family research — figuring out, is this just kind of an anomaly that this is happening to me … or, what's the deal? And aunts on my dad's side, all three of them, had really heavy periods. They are the generation before me, and they weren't ever diagnosed with endometriosis.
My aunt told me that she got diagnosed with something called … ready for this? … swampy uterus!
Lauren: Stop! That’s not a diagnosis! Come on!
Ilene: This was in the ‘70s, maybe!!
Lauren: Were there crocodiles in it?!?!
Ilene: Oh my god! So anyway, that went off on a small tangent about ...
... how inappropriately people talk about women's bodies, especially the medical field!
Lauren: Yeah, and it was probably a male doctor.
Ilene: Yeah, I don't know that answer, but probably, right? So I don't know if the technology got better or the understanding of it, but they started to cauterize the site instead of put a stitch in — because now this one specific spot on my uterus … sorry, on my cervix … had been annihilated. I probably had, I would say, that specific cyst grow back, or grow weird or grow differently … not that specific cyst, but that one site had a cyst growing on it … I would say I got it removed 25 times.
Lauren: And was the cauterizing not causing boils or blisters when they were cauterizing it?
Ilene: This is so weird; I don't know because I never saw it. But … part of my cervix got burnt, ya know?
Lauren: I’m trying to think it through … maybe, possibly, the cauterizing actually only made it worse?
Ilene: The stitches were making it worse; causing more scar tissue. So that was kind of where the problem was. That's basically my whole story — although it ends kind of well, which is good, because I personally think I’m cured. Knock on wood. I haven't had that issue in probably four years.
Lauren: So how did they fix it?
Ilene: I got an IUD.
Lauren: And that was the answer?
Ilene: For so many years, my doctor had said, “We want to try something more aggressive.” I felt, no. I'd worked really hard on keeping this a part of my life, and I want to have kids. I was young. And every option that they presented to me, I would ask what the fertility rate was and how much my fertility rate was going to drop.
Lauren: Which is a smart question to ask, whether you know you want to have kids or are undecided.
Ilene: Right. And I wasn't in a serious relationship because … I'm sorry, but how could I be?!
This made me very doubtful about my … sexuality is not the right term, but … my ability to be sexual. That was not even on my mind. And I was in that part of my life where it probably should have been, I guess; everybody else was in that time of their life. I still had the situation where I was, like, ‘No, I basically have closed that, for a long time ... until it gets fixed.’
Lauren: So it sort of stunted your psychological development because of what was happening physically.
Ilene: Totally, because developmentally, that should have been a thing that I was exploring. But … nope, I'm not doing that. But also, the one time I did it, look where it got me.
Lauren: And the shame that’s associated with that, as well as what's associated with the shame that we put upon ourselves as women or are forced to put upon ourselves ... Add to that the shame of, what if I start bleeding on this guy, or whatever?
Ilene: Totally. Or, you know, I can't really date someone because what am I going to tell them when I have my period? I can't do that. I've come up with really great lies to tell my students when I have a cyst removed and I'm barely able to sit down. I will tell them, “Oh, I'm really sore. I'm super sore; I just worked out really hard.” That's all baloney. I would just lean against something and barely move for the day. Which is not what good teachers do, but I figured it out.
Lauren: You’re also an award-winning and great teacher!
Ilene: Thank you! I actually think that my career saved me, and was a detriment at the same time. Because, like I said before, teachers are asked to perform absolutely amazing things, on levels that people don't even understand. I've seen teachers discreetly vomit in their sink, and then just go on for the day because they're pregnant and they have morning sickness. This is just how it goes. Because you have an audience of tiny humans that need you and and want your attention. They don't care. You threw up, that sucks! Anyway, I do think my career made me much mentally stronger. But at the same time, it also offered a really great distraction. You can't think about your bleeding cervical cyst site when you are teaching reading - you just can't.
Lauren: You have to give your full attention to these kids. Like you were saying right before we started this interview, you feel a lot of the time that you have an angel and a devil on your shoulder. That all of these experiences have two sides to them. You've lived in that space in between …
Ilene: …for a long time. And it's interesting because I always thought, ‘Look at me - like, I'm such a badass, I'm so strong, I can do these things other people can’t.'
But now that I know that, my stubbornness or badass-ness probably delayed my treatment for such a long time that I could have had some of those years of … I don’t want to say fun … but some of those years back where this was not my life.
Lauren: But by the same token, I would also say, hearing your story today, it's not all your fault in that sense. There is responsibility on the doctors who were treating you who didn't catch stuff right away. And as much as you liked - loved - the doctor that you had because she was doing great things for you, there’s also a huge thing you missed … because you mentioned that you have endometriosis, but at this point, they hadn't even said you have endometriosis.
Ilene: And I wanted the diagnosis. So I wouldn’t go crazy.
Lauren: But you didn't want to have that invasive surgery. So you were, like, ‘Well, I have endometrial symptoms.’ Which isn't even a diagnosis. Why is the medical system rigged, that we have to have invasive surgery to give someone a diagnosis that is clear from every other marker?! We talk on this show a lot about how having a name for something gives you a level of freedom — in terms of seeking treatment, but also being able to live your f*cking life.
Ilene: It’s a level of freedom, but it's also really permission.
And I never gave myself that permission to tell myself I was sick.
When you gave me the questions for doing this interview, I was sitting with my husband and I totally flipped out. I said, “I can't even answer these. I was never sick.” So how I got into this kind of level of remission, I guess is that I got the IUD, so they started measuring my hormone and progesterone levels on a regular basis. I would get tested when I was bleeding … which was about three times a month … when I was bleeding, when I was ovulating. And then when I was not doing any of those things.
Lauren: So, monitoring your hormones, but also your fertility.
Ilene: Right. The different phases of my period. And so what they ended up doing was kind of customizing these estrogen and progesterone shots. That was an interesting thing they did as well.
Lauren: That was in addition to the IUD?
Ilene: No, this was before the IUD. And I actually think that made things a little bit better.
Lauren: How did they administer the shots? Was it in your bloodstream or was it in your cervix?
Ilene: In my bloodstream. They tried both. My poor cervix! Every now and then I think about it!
Lauren: I would also say about the whole IUD thing … because you and I talked about this ages ago when I had first gotten an IUD, which I've taken out because it just wasn't for me ... It's extremely painful to get an IUD put in …
Ilene: Yeah. They said, “You want an IUD? Let’s do it right now because you can handle it.” It was hilarious.
Lauren: You have a higher pain tolerance. They give you an anesthetic shot first. They didn't give you that?
Ilene: No, I was fine. But you see, there's my badass-ness coming out, right? Which is not necessarily a good thing. They said, “All right, yeah, you can handle this.” I had gone in saying, “So basically, I want to have sex with my long-term boyfriend now. And so we have to come up with some fix.” But anyway, yes, it is painful to get put in. It's painful for the first couple of weeks after, and then I know people like you who just couldn't …
Lauren: … tolerate it.
Ilene: It wasn't for them.
Lauren: For me, it wasn't a physical discomfort. It was actually that it just messed my hormones up too much.
Ilene: Yeah. And then, no one deserves that sh*t.
Lauren: I was aware enough to say, “No, I’d like to take it out.” But I was one of those people that, when I had it put in at least, the doctor said to me … I don't know if they said this to you … “You might be really light-headed when you stand up.” And I was, like, “Yeah, no problem.” And I stood up and I was, like, “Hmm, I’m okay.” But then I left the doctor's office 20 minutes later and I got a cab home because they had said, you might want to get a cab, whatever. And waiting for the cab, I was, like, ‘I'm gonna die. I'm gonna die. I'm gonna fall over.’ That was me. You didn't even have the f*cking anesthetic! I don’t even know, girl!
Ilene: I was fine. It was just one of those things where I would tell myself, ‘Everything is a muscle' ... and … I’m a teacher, right … 'you have to practice these kinds of things, and it's going to be okay that you have to have this thing done to your cervix.’
I would always have these mental pep talks with myself.
And so, yeah, I had a great mental pep talk with myself, and they put the IUD in and I was good to go. But I think the other thing that cured it, was they did basically a light D&C … dilation and curettage … it's the same procedure you get if you're having an abortion, but there's nothing to abort. Because there's no fetus. But they dilate and they clean everything out, essentially.
Lauren: Like a vacuum?
Ilene: Yeah. Because my doctor thought that I may be growing cysts in other places, which is why my estrogen and progesterone could never level out. They didn't find much when they did that, but it was really only that one spot that continued to cause me problems. They realized that my cervix was under … you know, everything's all connected down there, especially … that ...
... my cervix was under so much stress that I was regularly having other infections, other incidents. That's one of the reasons why my body would be, like, ‘Oh, she stood up, therefore, we must bleed to her ankles.’
Lauren: When you had the D&C procedure, was that typical? Or was it kind of unusual?
Ilene: It was pretty typical. And I kind of got to a point where I started requesting it …
Lauren: So you had it more than once?
Ilene: No, I’ve only had one.
But, here's the thing … doctors had said, “Okay, well, you know, if you really want to stop this, we're basically going to give you a full hysterectomy.” And I was, like, “Who the hell are you?! No! I’m 24. And I want to have kids.” I have a lot of life goals, and that is a very strong one.
At an early age, with no serious partner, I thought to myself, ‘Well, should I just adopt? Or should I have a kid right now? Maybe I should be a surrogate for someone else?’ Because apparently, when you get pregnant, oftentimes the endometriosis can kind of calm down. I considered all of those things at a super young age, or what I thought was a young age. I know that other women have gone through this in their teens, and that's bananas to me. I don't know. I got the the light D&C or whatever it was, and that was a pretty good fix as well. And so I was relatively stable for about a year before I met Chris. And Chris is my current husband - my husband. He’s also my husband! That was a little faux pas!! He’ll be fine with it! So, Chris is my husband.
Lauren: For now! (laughs)
Ilene: (laughs) For now! We’re good! But he was not my husband at the time!
And I met Chris and I thought, ‘Well, I’ve gotta come up with a birth control method that’s gonna work.' Once again, small tangent on how women are usually the ones who are responsible for that bit.
Lauren: I was just gonna say, why do you have to figure that shit out?
Ilene: Exactly. So I was kind of sneaky and I went back and I got an appointment with a different doctor. Because I was, like, 'All right, it's time to try the IUD.’ But the worry about the IUD was … because they had mentioned IUD to me for four or five years before this … the fear was that it was going to screw with my hormone levels so much that I could have my period for, like, six months straight. And I literally thought to myself, ‘I might not survive that.’ Because my body often responded with ‘more’ and ‘heavier’. And so that's how they kind of thought I was going to respond. And it just ended up that that was not the case. So I still get my period on my IUD.
Lauren: It's an IUD with hormones, right?
Ilene: It has progesterone, yeah. What we learned was that my body produces less progesterone than needed, and sometimes more estrogen. So they gave me a progesterone IUD. And it's funny because I wouldn't say it cured it, although I think it did because I haven't had an issue or a cyst that needed to be removed for such a long time. So I feel like the fact that my body doesn't have to go through the trauma of having these absolute monstrous periods once a month anymore ... I still do get my period, but they're like … cakewalk! I'll take it any day! Every now and then I’ll say to my husband, “I'm a little crampy.” He's like, “Oh, my God, are you okay? Do you need anything?” And I’m, like, “Honey, you don't even know.”
Lauren: Being crampy is a good thing!
Ilene: I know! Thank you for your kind gesture, but I can just stand up and I can walk around the house, and I'm not gonna, you know, bleed out on our white carpet. I'm great. Life is killer right now!
Lauren: Livin’ on the edge with that white carpet, girlfriend!
Ilene: Hey, I moved into this house post-IUD, so we're doing good! Exactly.
Lauren: You talked a bit about how on several occasions you drove yourself to the doctor — when you probably needed someone to drive you home because you were a little debilitated, or you needed someone to lean on. Obviously, you spoke to your mom about stuff early on. Have you ever, in this journey to releasing yourself of pain, had an advocate? Or someone who you leaned on when you needed help? Or was that you?
Ilene: I honestly would say my advocate was myself. I met someone else with endometriosis towards the end of my insane having-cysts-removed-all-the-damn-time stage.
I met someone else with endometriosis … and I was like, you're real! There was this whole moment where I was, like, ‘If you're real, then I guess I'm real, too.’
There was this whole thing.
Lauren: You never thought to go on forums on Facebook to find a community?
Ilene: Well, at the very beginning, Facebook didn't really exist. And so I told a couple of my friends, “You know, I’m having these really intense period kind of things. And I think it might be this thing …” I was maybe a junior in college. And people would send me these articles, and they freaked me out. So in my mind, if I were to hear someone else tell this story, I'd think, 'Oh my gosh, that poor girl, she is just so stuck in survival mode. She's not getting enough help.' So no, I didn't really have an advocate. I had really good girlfriends that I would call, but I also felt like the story got kind of old eventually.
Lauren: To you?
Ilene: And I didn't want to make it kind of old to other people, too.
Lauren: That you had to be your own strength.
Ilene: Yeah. And my goal was to live my life not being sick.
Lauren: That’s a fair goal!
Ilene: It’s a totally fair goal, right?
So how I took it was, I have to be mentally stronger. I have to be stronger than the pain.
Lauren: You’re going to be so great when you have kids! Childbirth is going to be a breeze!
Ilene: I’m just gonna sneeze and pour it out. That’s the plan! I had a doctor tell me that once. And then towards the end of all this sh*t, one of my really good friends was pregnant for the first time. And I remember thinking, ‘Yeah, I could totally do that. I could totally do that.’ So, yeah, I’m pumped!
Lauren: You talked about the other woman you met who had endometriosis. Was it about having that community?
Ilene: Yeah. And that was really important to me. I thought it was so cool. We’d text each other: “Oh, I got my period today.” And she’d text: “Oh my God, how are you doing?” And I'd be, like, “Well, you know, it's only 8am and I've changed myself five times already!” And she’d say: “Remember to keep your electrolytes up, and make sure you're eating your protein.” There was this cheerleader that was in my corner, and I would do it for her, and I felt super good doing it for her. But we also both had these weird stories. She also never got an official diagnosis. That was cool to me, too, that there was someone else just like me. I don't know why I didn't jump on forums, and stuff like that. Once again, I think it's because I thought to myself, I'm not that sick.
Lauren: Yeah. You talked a bit about that balance, right? Especially at work, balancing your symptoms with the task at hand, and what you need to get done. How other teachers have done that around you. It sounds to me that being a teacher is probably a really tough profession to be in when you have a condition like this, or any kind of condition that forces you to have to sort of stop everything because of discomfort. How do you balance that? Do you still just have a 10-minute break for lunch and to pee and change your 16 tampons?
Ilene: Well luckily, no, me and my 16 tampons have separated because I don't need them.
Lauren: That’s amazing.
Ilene: It's amazing. I don't know. Honestly, I'll look around at other people in my profession, and think, we're superheroes right now. This is ridiculous. People don't get it, which I totally understand.
Lauren: Well, I'm not a teacher, but I get it.
Ilene: That's true. Thank you.
When it was particularly tough, I would have all these mantras. I really believed in them. But it was really me brainwashing myself, sometimes … I am stronger than this. I am totally unbreakable. And I can do this today. And no matter what it was, that's what I would tell myself.
I'd be standing in line checking in at Kaiser and I’d be: I am stronger than this. I'm totally unbreakable and I can do anything that I’m asked to do today.
Lauren: How did you even come up with that? Was that just from within you? That's pretty exceptional. It's really interesting because obviously I talk to people from across the spectrum of invisible illness. It’s amazing how many people have figured that kind of sh*t out themselves, without having to go to a therapist or speak to 30 different people.
Ilene: You have to ...
... because I felt like I was choosing to be sick or choosing to be strong. And by hell, I'm going to be strong.
Every time I got a cyst removed, I would tell myself for a hot second: ‘This isn't your fault.’ And I would blame it on the guy that raped me, which I think was appropriate, because I do think it's all connected. And I do think that the trauma that was on my cervix was undealt-with trauma. I went to therapy about the rape, right after. I went to therapy again, multiple years later, after the cyst was found. So I was taking care of myself mentally.
But there were times when I just wanted to have a pep talk with my cervix and be like, ‘Honey, we're going to get through this. Tell me what you need and I'll figure it out for you.’
Because it was always that same spot that was having the cyst.
Lauren: Like a ghost that keeps coming back to haunt you.
Ilene: Oh, it was totally a ghost. And this is why … hell, keep yourself away from all people if they tell you not to have sex for two weeks. Really, do it. He was my boyfriend; I thought he was going to be totally fine.
Lauren: But that’s also within the realm of the statistics. The higher percentage of rapes that occur …
Ilene: … are people you know. So I went to Kaiser Santa Clara, which is a teaching hospital. And I was a rare case, and so people would bring young student doctors in to see me. And they would always ask.
Lauren: Okay, I was gonna say … please tell me they asked permission!
Ilene: They always asked, but here I am a teacher, so I'm like, “Yeah, go ahead. Everyone’s going to get a look. I’ll open wider!” (laughs)
Lauren: You’re also such an open person, so that doesn’t surprise me either!
Ilene: Yeah, go ahead, come touch my cervix - because I can’t!
Lauren: Maybe you can cheer her up, because I can’t! (laughs)
Ilene: So I remember one time I lost my sh*t. I'm laying down … we're getting into it here … I'm laying down and they’re literally shooting local anesthetic into my cervix, which hurts like hell …
Lauren: Yeah, that shot … because it's a big f*cking needle because your cervix is pretty high up there! That needle is, like, a giant-ass needle!
Ilene: I didn’t see it. If I saw it, I knew I'd lose my mind. So there were … I’m trying to remember … there were three baby doctors. I don’t know if they were interns … I watch too much Grey's Anatomy. But they were there; two were male and one was female. The other cool thing about Kaiser was that I could get in whenever I needed to, because someone could always see me, which was awesome.
Lauren: Who isn’t always necessarily your primary care?
Ilene: Yeah, and it was someone else. But my primary also was the head of the department, and so she was regularly delivering babies on the floor right below me. So she could come up, take care of my cyst real fast, and then go back to delivery. Anyway, kind of an ideal situation if you need one. Okay, so here I am. I'm laying down … there’s frickin’ butterflies on the ceiling because there is always something up there to look at while you're in the stirrups.
Lauren: Really? They chose butterflies? It's such a feminine cliché!
Ilene: Yeah, put hot people or something, right!? Come on!
Lauren: How about Wonder Woman?
Ilene: A little porn, maybe? To relax me! Like, “Your cervix is looking good.” “Yeah, just keep going!” Anyway, it’s the friggin’ butterfly room, which I'd been in before, and I'm staring at the butterflies and I'm saying my mantra over and over again. You are unbreakable. You are unbreakable. You are completely unbreakable. You're stronger than this. You can get through anything because you are unbreakable. And so it's three male doctors. One of them's performing the removal, two baby male doctors and a female intern. And then there was a nurse because there has to be a female in the room with you, which was great. The nurse was awesome.
I'm hearing the doctor say, “Okay, so this is what happened. And look here … we can see the site of the sexual trauma.” And one of the male doctors inhales super loud, looks at the other dude, and says, “It's like a war zone in there!”
Lauren: No!!! How dare they??
Ilene: Lauren, that was my actual reaction! Like you said, I’m very calm and open, like, yeah - anybody can look. But I said: “You need to get out of this room right now. I am not okay with it.” And the doctor said, “But, wait …” And I said, “No, no, no. I'm in charge. They need to leave.”
Lauren: I’m so proud of you right now!
Ilene: The nurse … bless the nurse! She was so awesome. She came right to my face and she said, “That was the right thing to do. You're looking at me and me only, and we're going to get through this. Do you want me to find another doctor?” And I said, “Just get it done. Just get it done and get it done right now.” And she said, “Okay, we're good. We got it done.” The doctor tried to talk to me and the nurse was, like, “No, you be quiet.” And I was: “Yes! You’re so on my team right now!”
Lauren: To me, that's also a basic human dignity and sensitivity thing. You are a male treating a female … you don't get to say stupid sh*t like that.
Ilene: And in my mind … because I made up this part of the story to make myself feel better … in my mind, the other female intern or whoever went outside and reamed him. Because it's also really, really poor bedside manner. I can hear you; I'm not on a movie screen. You're actually inside my own body right now. I should be out gallivanting around, having wonderful sex, and instead I'm letting you look inside my cervix and stick needles and sh*t in there.
Lauren: And also, you're going to talk about a war zone two seconds after the doctor has said “the site of the sexual trauma”. Go f*ck yourself!
Ilene: You’ve got it all wrong, son! The other thing that's interesting is that my mom, who was my advocate when I was younger, for sure … I had all this secrecy from my mom. My mom, as many women unfortunately do, also had a rape story in her young years, and hers was literally at knifepoint. So, in my mind, once again, this story was not as bad as my mom's. But to protect my mom, I just kind of stopped talking to her about it. She knew - and she knew a lot of the little details. But I felt like it was my job. And once again, this was me being too brave … or too strong or too stubborn or whatever it was. Because I thought to myself, I lessened my experience on all of it, and just told myself for my mom’s sake, I'm not going to tell her about every detail. And she never asked me to do that.
Lauren: And she was also brave enough to share her story with you, which is pretty exceptional from a parental perspective.
Ilene: Absolutely. I just think there were a lot of culminating factors, me feeling like I had to be as strong as I made myself. And I don't know, if I was going to give advice to someone …
Lauren: Yeah, that was going to be my next question. Because you know I love my lists — tips for someone who suspects they might have something going on?
Ilene: I think you need to find a really good doctor that you trust to be able to tell everything to. You need to be able to tell your doctor, “So, we almost, you know, had anal sex last night and I stopped …" This didn't really happen to me. I'm just coming up with a small scenario! But you need to be able to tell your doctor every single detail. “Yeah, you know, I was on top yesterday and it hurt and I don't know what to do about that.” Or, you know, “He couldn't insert and then eventually we gave up because it was like five or six times. Why was that happening?” Because there have been scenarios where, in my mind, I've thought it must be because my cervix is too sensitive right now. You have to find a doctor that is going to be totally on your side.
Lauren: Well, you also need to find a good partner who's also patient.
Ilene: 100%; that is exactly right. One of the moments that I knew that Chris was my person was the first time we had sex, because I got just super …
Lauren: Super stressed and you tightened up … ?
Ilene: I tightened up, but I also was telling myself my f*cking mantra that I would tell myself when I was on the table …
Lauren: That should not have to apply to sex!
Ilene: No, but it totally always did because I was always so worried about it. As I'm telling myself this, right in the heat of the moment, he said, “Wait, do you want to stop?" And I was, like, ‘Oh my God …' not like 'you figured it out,' but …
Lauren: … you're paying attention.
Ilene: Yeah, I don't want to stop. He was paying so much attention. But at the same time, you know, I told him, “This is a big deal to me.” And he was so great about that. You know what I mean? So he definitely has been my partner through all of this. But it's so interesting, because he hasn't actually seen the majority of it.
Lauren: But you've obviously shared it with him in a way that has made him understand it.
Ilene: Yeah. Absolutely. In a way that's made him understand it … like, “How many tampons do you need this month? What color are we buying?” Like, he doesn't care — which no man should. It's a completely normal part of your body … but …
Lauren: But if you want to have sex with a woman, you need to deal with all of it. That's my feeling about it!
Ilene: Oh, absolutely. My hippie alternative acupuncturist, who's so cool; she was really into that being a big piece of my health, as well. She really wanted to get me to a place where I felt comfortable having sex.
Lauren: That’s really wonderful.
Ilene: Yeah, I know. So I met Chris … and she was one of those people that was so in tune with my body that she already knew. I think she was really an advocate for me. She was also very much on the page of, “No, we're not doing anything drastic, because you're going to have healthy babies. You're going to have healthy pregnancy.” It was just nice when I met the acupuncturist, that she was really willing to be on my team of, “Oh, yeah, you want to have kids? Well, then that's what we're working towards here.”
Lauren: She listened to you as a whole person.
Ilene: And what I wanted. I always told people that I would confide in about my illness that it's such a tricky thing because it's not like my arm is hurt. If your arm was hurt, you can say, “Oh, my arm is hurt."
Lauren: And people can see it.
Ilene: People can see it.
And this is to do with all invisible illnesses, but I knew I couldn’t go up to just everybody and say, “So I can’t finish up my coffee order right now, because I'm about to bleed out on your floor.” I just got really good at pretending stuff.
Lauren: Pushing through.
Ilene: I was pushing through. Yeah. But anyway, I think that for people who are facing the same issue, I would say you really need the wraparound services. You need the mental health component. You need the acupuncture, and you also really need the western medicine doctor — if that's what we're going to call them — that you really believe in and that you trust.
Lauren: And that believe and trust in you.
Ilene: I really did believe and trust, but it took me a lot of time to figure that out.
Lauren: But you stuck it out — as you do.
Ilene: I stuck it out because that's the theme of this whole thing, right?
I’m strong enough. And I'm unbreakable. I think you need all of those things. But I also think that you need a community.
I do wish I’d had that community of people. Okay, so here's my other reason that I didn't go on Facebook forums or whatnot. And I'm not saying anything about anyone who's listening, because I don't know you. But I was very solution-oriented at this time. And I was putting in too much mental strength for me to be able to live my daily life to really even be empathetic towards … other people. That makes me sound like a raging b*tch!
Lauren: I’m looking at your face as you're saying that and you have this look of “oh, this is awful to say!” — but you expend so much energy. And you are expending energy just to stay standing. You don't have a lot of time for other people's problems. And that's okay. And that's where the question of worthiness and self-worth and esteem all comes into the equation as well.
Ilene: Totally. And so I think finding your community is important, but for me, my community needed to be solutions-based.
Lauren: Well, those forums … I was actually just listening to some audio for an episode that's going to be on before yours. One of my friends, Katie Georgiou, who has MS. She never really spent much time on the forums; well, she spent some time on them, but she has to limit it because it can get kind of, ‘symptom porn’.
Ilene: Yes, exactly! Right. And I couldn't handle it. But then at the same time, way early on when I said that people would send me these articles and say, "Look at this article about endometriosis, and there’s a link with hypothyroidism.” I would read it. And there was also this need for me in that moment to tell myself that this was all real and that I was sick. And I was also in this whole, glazed-over phase where I was just, like, ‘Nope, I am strong enough. And I'm unbreakable. And this is where I am.’
Lauren: Well, you were in the period of time in which you were not facing it. You were not ready to go, ‘Okay, I have a thing.’ It was before you were able to accept it.
Ilene: Totally. That was definitely happening.
Lauren: It’s a level of denial, but that's part of that whole … what is it, The Seven Stages of Grief, right? Denial is in there. And I actually think that those stages apply perfectly to the acceptance of any kind of diagnosis. You know that when you get a name for something, things will get easier. But you also know that your whole life will change, and you're not sure how. Until you're in it.
Ilene: Totally. And I think there are so many factors that go into that. And there were so many factors that went into that for me. But once again, going back to what would I tell the girl that is dealing with this crap? I would really make sure to have her know that you're okay.
You don't have to ride a horse during your period to tell yourself that you're womanly enough or that you’re badass enough. Stay in bed for two weeks. Eat the cake. It doesn’t matter. Once I started realizing that I was allowed to feel those things, I actually think I got better.
Lauren: Yeah, and that was part of the mental shift for you. So, you've said, in terms of tips for people: be gentle with yourself. And get your team together, and find community. And team is medical team.
Ilene: And also, the woman that I found that was one of my friends who also was diagnosed with endometrial symptoms, she was also a badass. She was a weightlifter. And so I added in a whole piece of absolute daily exercise. And that was crucial for me, no matter where I was in my cycle. I would stay in bed for too long and eat the cake … and then I'd exercise. And that really helped me. Movement was the only thing that would cure me … well, I actually found that tequila kind of did, too … but you can't drink tequila in the middle of the school day! So I would take my class out for jogs; when I thought, ‘Oh, I'm gonna die here,’ I would actually force myself to move.
So that would be my other tip … you really just need to move your body on a daily basis, no matter how crappy you feel.
Even a walk is worth it. And, I don't know if it will lessen some of the pain or free up some of the mental space.
Lauren: They do say that about exercise. And it's hard, too, because when you have your period and you're feeling crappy, and you feel bloated, everything just feels sort of heavier. And the last thing you want to do is move … doctors will tell you, "do some exercise, you'll feel miles better." And I'm always, like, ‘Ooh, I don’t wanna!’ But the minute I do …
Ilene: You have to do it. And that's when you can tell yourself you're totally a badass, too, because you did it.
Lauren: I love that you use the word badass so much, too. Because you are one; and in a way, this whole experience of pain has made you your own hero, right?
Ilene: Right. And I am at the point where I can tell myself that, you know what I mean? Because before, I would humble that and be like, ‘No, no, it's just normal. This is okay. It's just a little thing. It's totally fine.’ F*ck no!
Lauren: We're talking about making these different lifestyle changes. What do you do when you're having any kind of pain flare-up? Or just a comfort activity or a guilty pleasure? Do you have any Top Three Things that you love, that make you feel great?
Ilene: Oh yeah, chocolate and meat!
Lauren: Chocolate and meat! At the same time?
Ilene: Sometimes! I don’t know! I don’t happen to have pregnancies all the time … it’s something that doctors would tell me [might be a pregnancy craving], but sometimes I’m like, God, I just wish I had some steak that was slathered in chocolate!
Lauren: Molé sauce!
Ilene: Molé sauce! It’s just not sweet enough, but it might work! Those are my things. Chocolate and meat. And good meat; red meat. Those were my two comfort things that I would always eat when I was having a really bad period. The other thing I would do because I live in California [and there are often drought warnings] is I would let myself stay in the shower or the bath as long as I wanted because heat was kind of a way that I could cope. I would wear those heating pad things when I would work. And it didn't really help, but it just made me feel more comfort.
And the other thing that I do is, I really prioritize sleep.
I think that it's really important, and if my body is telling me at the end of the day that I need to go and at least lie down by 7 or 8, I lay down by 7 or 8 — and I feel way better the next day. It's not a cure-all, but I didn't realize that that was such an important part. So I would say: chocolate and meat, sleep and exercise.
Lauren: And heat.
Ilene: And heat. All the time. I would always have heat on me. I would go to these craft fairs, and they make those little …
Lauren: Corn bags!
Ilene: And I’d be, like, “Hey, cute old lady that made this … make one that goes all the way around because I need it on my back and on my stomach!” Anyway, I found one that was great, and I've had it for about 15 years and I freakin’ love it. Even though I don't need it as much now, I'm like, ‘I just want to heat this up and hold on to it!’
Lauren: So, Ilene … you've been such a great subject and so brave to share your story.
Ilene: Thank you.
Lauren: You and I have been friends for a long time, but I didn't even know the extent of a lot of your experiences. So being able to share them with me and with the larger audience is really brave of you. And I really hope it encourages other people to do the same. And to really seek help. Because there is help for this stuff, and sometimes it is a process of trial and error — just like you went through. But there is something on the other side of it. And just knowing that that hope is there is really one of the best things that we can give to others.