Collage of a purple uterus with aqua fallopian tubes and vagina, green ovaries, and blue endometriosis lesions, on a gold cutout background with silver stripes

Deep infiltrating endometriosis

Endometriosis

headache

joint pain

fatigue

insomnia

abdominal pain

My name is Sarah. I am 32 years old. I'm about to be 33 in a few days. I live in Chicago, Illinois. My pronouns are she/her. I am white. I'm Italian Irish and a few other things.

I've tried to tell my health story in many different ways, in many different forms, in many different moods in many different mediums and formats, so it's been an ever-evolving adventure I would say, to try to define, and I'm already getting emotional, but that's pretty normal for me.

It's been a long journey of trying to understand my own health journey. Unfortunately, due to the medical care that I've received in my life, most of that journey has been me alone figuring it out on my own, so really where I pinpoint the beginning of my chronic illness journey is when I'm very, very young. 

My health journey begins when I'm around six years old. When I was around six years old, I think, was when I started to starve myself.

I was raised by an anorexic mother, and I think I just learned it as a coping mechanism from her. Not to blame her because I think she has her own journey in her own right. I think that's where I got the concept subconsciously. A lot of times people don't realize how much children are just following your lead and not listening to anything you're saying, so as much as my family told me to eat green beans, I saw my mom starving herself every day until my dad got home.

That was a coping mechanism that I learned and started employing. No one made my lunches or breakfasts, so I would just wake up and then go to school and I wouldn't eat all day, not to say there wasn't food around. There was cereal in the cabinet, but again, at six years old, I was not the type of kid to be raiding the cabinet. I was the type of kid to be starving herself.

Essentially that's how I think most of my health issues came about. By the time I was 10, I had a very large tumor on my thyroid and I was hyperthyroid. I remember reading how this was a hormonal problem of women in their menopausal years.

I remember that very distinctly. I was like, oh, what's going on with me? Moment confusion and why is this happening, but no one around me ever really thought to ask why it happened. Everyone just accepted it and then did what "needed to be done" and then moved on as if there was no reason to the things happening to me that were very odd for my age at least. At 10 I had half my thyroid removed, and then was put on synthetic thyroid replacement every day.

That's when I remember starting to feel extremely depressed, and then when my period started, they were absolutely horrendous.

My periods were horrendous. I would puke. I would have to go home from high school. I remember driving home one time and having to pull over and puke on the side of the road, and then I remember getting home and sitting on the toilet and just clutching my stomach. I remember having an extensive conversation with God, begging him to save me from whatever was happening to me because it truly felt I was dying when I would have my period in high school.

It would be so bad that I would literally just get into the fetal position and pass out from pain, which is really extreme for me because I was an insomniac since I was five or six. The only time I've ever quickly just fallen asleep is from extreme pain. 

I remember those teen year periods being so severe and no one at all around me thought it was strange. That seemed extreme. 

I went to college when I was 17, and that's when I really started having much worse pains. I started having really horrible lower back pain that would suddenly hit me and I wouldn't be able to walk. It started getting more and more interruptive more and more often.

Then during my second semester of my freshman year of college, I woke up in pain all over my body, really severe pain similar to when you work out or something, but it's way too much or if you had the flu or some sort of pain like that where you just feel like your whole body just got absolutely trashed. That has never gone away. That is what doctors would consider fibromyalgia for me. However, I do feel that it is strongly linked to my endometriosis.

Shortly after that, I had to withdraw from college because I couldn't sleep and I was in way too much pain. I just could not keep up with anything anymore. I moved back home with my parents and I started to go see some doctors. 

I remember distinctly researching on my own and finding an entry for endometriosis in a medical book, and I knew it was what I had. I was just reading down the list like, “I absolutely have this. I already know.” I went to the gynecologist and this makes me so upset every time I think about this because I just want to go back and slap this lady so badly. I went into her office at age 18 and I said, “I think I have endometriosis.” This doctor told me, “No, you can't have endometriosis because you're still a virgin.”

It's really horrific. Every time I think about it. How is this woman allowed to practice medicine?

I was such a good girl that I believed this doctor. I was like, "Oh, if the doctor says that that is a reason, then I know I do not have that because I have never had sex," so I ruled it out.

Unfortunately, that's what happened when I was 18. Very shortly after that, I saw a rheumatologist who diagnosed me with fibromyalgia.

Though that was very helpful and empowering, and honestly, lifesaving because I was super suicidal having to withdraw from college. 

I lived on a farm and I thought about what I would do for 18 years, so to go off to college and then instantly be back and alone was very traumatic for me. Anyway, it's very empowering to get that diagnosis because it allowed me to go back to college. 

They allowed me disability accommodations that I needed in order to not just play keep up because of my illnesses; I would just need more excused absences. That was mainly what I was asking for, but that helped me keep up. Then it also allowed me to still thrive because I feel like to get absences approved might seem small to everyone else, but it gave me such a relief as well where then I wasn't feeling bad about it or having to deal with the drama of it either.

It's not only just the staying home when you're sick, but it's also the, it's okay to stay home and be sick all day, and I'll do my paper tomorrow or I'll get my final done at the extended makeup date. Anyway, because of that, I was able to go back to college. They really gave me a lot of empowerment in that disability program. I spoke on disability panels and started the first ever fibromyalgia or maybe it was chronic pain, I forget, but support group there, which by the way, does not work.

You can't have a support group for chronically ill people because we're all sick, we can't make it, it's just an email thread. Just an email thread of reasons why none of us are there. I was able to do all that, and then after graduating college or actually, near the end of college, I started having horrible severe migraines pretty much constantly to the point of very dizzy, very hard to focus. The best way I could describe it is if your whole body had a migraine because it's like my whole head would literally be pulsing and throbbing all day.

It's hard to describe until you have it, but it's the worst thing I've ever experienced. I had those for several years, almost every day. That's when again, my health became critical where I was like, “I don't know if I can keep going. I don't know if I can survive.” At that point, my sister helped me basically do some weird detox, herbs, diets, all these different things that if I look now rather I can see this is basically what they recommend for endometriosis.

A lot of health changes or diet changes can help people drastically. I’m talking giving myself enemas, drinking crazy juices every single day — beet juice and stuff that’s really unpleasant. Basically what I think had happened to my body over the course of my life with anorexia and then probably IBS and endometriosis, fibromyalgia, my digestive system was just horrible.

I just had stuff stuck in my butt. I had just way horrible horrible gut. That accompanied with a lot of just mental changes I guess and lifestyle changes really helped me to make my body less symptomatic. Then I finally was able to get diagnosed with endometriosis at age 26 or 27. Essentially with all those migraines, I was just too fed up. 

In my mid-20s I started having these horrible pains with ovulation that I thought was appendicitis several times. I ended up going to urgent care one time and the ER another time. Then eventually I was just like, oh my gosh, I'm just having this crazy death feeling pain again. I would just lay in bed for two days. That really clued me in on there is something going on in my midsection still that is undiscovered. 

I finally went back to a gynecologist who agreed to do a laparoscopy on me and diagnosed me with endometriosis. That was empowering, but obviously super upsetting due to the 18-year-old interaction I had with that other doctor. Then honestly I was just put on to more terrible things.

Unfortunately, I took Lupron injections because the doctor said, “You'll take this and in three months you'll have no pain.” I took one injection and I had the worst mental side effects I've ever had from anything in my life. I would never recommend Lupron. If you look it up it's crazy. It's literally a prostate cancer drug. I don't know why they give it to women. I think it's because they don't study women in medicine.

I couldn't function. I had the worst anxiety and sweating and I literally couldn't make one decision. That was horrible. Then I did tons and tons of research for six months which led me to the brilliant women of the internet who are better than all the doctors combined who told me that I needed excision surgery. I got excision surgery done by an approved specialist from a weird list of specialists that some amazing woman made. 

He did a good job although I even had questionable interactions with him. I've literally never had good doctor interactions so who knows? Point is that did give me some relief. However, it did not give me that much relief, I unfortunately will report. 

It led me to the realization that my migraines were directly connected to my stomach because the first time I didn't have a migraine for years was when I got out of surgery. That was because I hadn't been able to eat for the surgery for many, many hours. Then they made me take this flushing thing that basically made me poop out everything. After that plus a bunch of IVs, I didn't have a migraine. My sister and I, mostly my sister did tons of research on that. That's when I started doing all those enemas, all those diets, all those crazy things which was so difficult because I also was triggering my anorexia.

I don't know where to go. It's a whole crap bag when it comes to diet because I have IBS anorexia and then actual food sensitivity I think as well. It's very confusing but regardless that helped me to relieve myself of migraines. Now, I can eat semi-normally again. I even gained a lot of weight during COVID because I just had the ability to go to the gym and eat a lot.

That was my life-saving moment was after surgery because we had that clarity of how these migraines could actually go away and it took about a year of weird diets and herbs and all these crazy things. I won't say it will work for everyone because I don't know that everyone's problems are connected to their stomach. I know for me definitely it was.

I think a huge part of that is my eating disorder. I really didn't realize I had an eating disorder until my mid-20s. I began to realize it in my college years, but I think I was like no, no, no about it a little bit. In my mid-20s it was really evident to me that a lot of my illness might actually be stemming from this horrible addiction/pattern. I finally got diagnosed in my late 20s and I'm trying to think if there's any big milestones after that.

Honestly getting rid of those migraines was huge for me. I don't know if a lot of endo sufferers also suffer from migraine.

It's so weird too because I went to the doctor so many times for migraines and no one ever connected that to anything. They always wanted to check if I had a deviated septum or something. 

I told my sister recently I hate when I have cramps because I don't know what to do. If I eat almost anything will make my cramps worse. It's anything in that region even slightly expanding, even my stomach a smidge just feels horrible but then I have to eat. You feel trapped into these weird issues, but I feel like there's ways to even learn what foods or what activities or what circumstances make your gut less inflamed during those times or something.

I feel like there's so much functional knowledge that could be discovered that people just aren't paying attention to because it's all just women's troubles to people. If this was a monthly issue for men, they would definitely be like, hey, let's huddle up and figure out. Then they would ban certain foods for that time of the month because they'd be so selfish about it. That's how I feel like it could be approached in this community almost.

There's so many women with endometriosis. I just find it interesting that there's not really any, I don't think, real effort to treat the disease, figure the disease out in the medical community. It's like you're either turned into a strange experiment, or it's like, just try this drug, which is fine, but that's just experimental. You're just throwing different drugs and seeing what happens, or it's treated as almost normal, like, oh, you're in a lot of pain, I guess. I just find that wild.

Since then, that's pretty much been my plateau. I've been just similar since then. I don't know if I have anything else.

I'm working on this project right now. I have an episode of it that's literally me sitting on the toilet. I guess it's because I really feel passionately that people are not really looking at the very obvious signs of health, so the easiest way to tell if you're sick is through, what's your poop like? I feel like never has a doctor in my whole life ever asked me that.

I've never been asked by a doctor about my eating habits, about how my stomach feels or what my poop’s like. I've even reported, oh, I get stomachaches or anything like that, and still there's never been any responses or any investigation into it. It's like when you have a pet, that's the first sign that your pet is sick. If your dog is having diarrhea, I know it's gross, but then you're like, oh-oh, something's wrong with Spot. Then you do something to make Spot feel better.

I feel like there's this very, very taboo around it, that makes it-- Maybe some people grow up with a household that is very open about that, but I personally grew up in that household that was literally like, please never talk about that, that is gross. I wasn't given any information about what's normal, so unless you're some very forward-thinking person about health where you're like, I'm seven, and I wonder what my poop should be like?

It's like you really don't have a guide or a map if your parents are not paying attention or do not care to tell you, or maybe don't even know themselves. Our basic health education is terrible. I feel like it should be way better. Obviously, I think parents have the ultimate responsibility, but there's so many people that aren't going to make that happen. It's wild to me that there aren't more simple understandings of health that are common.

Again, I grew up in a certain time period, so maybe that's also a contributing factor. It's shocking to me to be an extremely, extremely thin, sick girl my whole life, and no one says, hey, maybe it's because you're so thin. Do you eat a lot? Never even ask me what my eating habits are. To push that a step further, society wants women to be smaller, wants them to take up less space, and people affirm that and encourage it.

When someone sees a very thin person, they say, you look so great. They hug you and they say, “Don't eat more, you look perfect. Please don't gain weight.” People actually tell you that. I recently was like, “I really want to gain 30 pounds.” 

Everyone around me was like, please don't. Literally, openly begging me not to. We live in this weird, weird culture of feminine beauty is skinny, when we know that clearly there's a whole million different ways to be gorgeous.

I guess to me, I feel like a lot of what I've gone through is obvious in hindsight. I feel that all the responsible people around me were either not even looking or just so-- [silence] I'm bothered. I think that's the real issue at heart for me, especially with endometriosis, is that female pain is not even believed most of the time, and neither is female pleasure. I think both of those things are super important for people to start actively believing because we have a society built around their disbelief.

It's like we disbelieve women about their pain and their pleasure, and we've actually built society around that. It's wild to me. I also just wonder about the medical community at large because I really don't feel that they're really trying to help people. Maybe I'm just so jaded from having the worst possible experiences back to front. 

There's a cult of disbelief around women in the medical community. It's turned into misuse and abuse, and women are just discarded. I don't know what it's like everywhere, but I do know what it's like in my experience. 

There's something very sinister to me in the medical community especially when it comes to women and whether it's subconscious or conscious, willful or just a byproduct of something else. I don't really trust that they're really trying to help. I don't know how they can raise as much breast cancer awareness money as they do. What are they doing with all that money? Maybe I'm like too much of a conspiracy theorist.

We can raise so much money for one female cause, but it's only if it's boob related. It's only if it's pink and it's only if it's not too unpleasant. I just feel very distrustful of medicine at this point and I'd really like to see simple things change. 

Wouldn't it be so lovely to go to a doctor and when they don't know what's wrong with you they say, “Huh, I'm really stumped. Your pain is real. I'm so sorry that you're in pain. However, I do not know why. I'm going to think and we're going to try to get you to someone who can figure it out.”

 Everyone just told me, “You're fine, you're fine, you're fine. You're great. You look great. Your blood looks great.” To be crying in pain and saying my life is ruined. I want to die. Then for someone to walk out of the room, walk back in, and then say, everything looks great.

What am I doing here? Am I real? Am I even here? That's insane to me and that's just such obvious gaslighting that it seems sinister to happen over and over.  I resent the fact that I figured out I had endometriosis before anyone else in the medical community could.

That's what really pisses me off. That's what really makes me extremely distrustful because people are paying all that money and doing all that studying and then getting paid all of that money to perform a job. I shouldn't be better at it. I just shouldn't and I've had to be better at it to survive. 

I had a conversation with a friend of mine who was also chronically ill. We both had to drop out of college at 18, so we were like buddies about it because we knew each other as freshmen, and then we both had to drop out. We were both talking about how upsetting it is that we had to be so insanely smart to survive this long. If I were any dumber, I don't know if I would've made it because very smart, powerful people were gaslighting me for so long.

Sarah

name

placental abruption

lichen sclerosus

vulval cancer

Endometritis

pudendal neuralgia

Müllerian duct anomaly

Nutcracker syndrome

Fibroma

MRKH syndrome

Interstitial Cystitis

perimenopause

Asherman's syndrome

amenorrhea

cervical cancer

Vulvodynia

post-ablation syndrome

undiagnosed

PMDD

uterine polyp

hydrosalpinx

Ovarian cancer

dysmenorrhea

cervical polyp

fibroids

menorrhagia

Endosalpingiosis

endometrial cancer

Adenomyosis

Ovarian cyst

PCOS

diagnosis

labial resorption

clitoral phimosis

decreased clitoral sensation

tearing on insertion

swollen lymph nodes

white patches on labia

cuts and tears (vulva)

ulcers (vulva)

labia shrinkage

burning

Itching

chest pain

rectal bleeding

weight loss

leg pain

numbness

shoulder pain

shortness of breath

rectal pain

asymptomatic

fever

acne

hair loss

night sweats

vomiting

moodiness

ovulation pain

pressure sensitivity

infertility

anemia

nausea

excess body/facial hair

pressure

diarrhea

constipation

bleeding or spotting between periods

bleeding after sex

Irregular periods

back pain

menstrual pain

painful bowel movement

bloating

frequent urination

painful urination

heavy bleeding

pelvic pain

Painful penetration

symptoms

Torrance Art Museum

USC Keck School of Medicine, 2023

Kaos Festival of Contemporary Collage, 2022

Endo Revolution video

Endo Violence Collective Magazyn #3

Images from Breaking This Silence

Art and med

Heading to Bordeaux

Keck School of Medicine Talk

Collective Memory

Curated by Girls

Kaos Festival

Portrait of the artist

Ever-Emerging Magazine

Painful menstruation has been a generational trauma passed down in my family. Almost every woman in my family has either had surgery on their uterus, like having a hysterectomy or a laparoscopy. Most recently, my sister had a fibroid removal surgery that ended her life. It shouldn't be something that ends your life. It shouldn't be something that spiraled my life so far out of control.

My period started when I was 13 years old, but it wasn't until I was 15 that I noticed that it was 

ainful. I remember one day, I had asked my mom to stay home from school because I just couldn't get out of bed. I was wrapped up in blankets and she left. She said, okay, because it was the first time

she came back home and I was in the same spot she left me, she was 

. She and my step-grandmother were just kind of laughing

, “If you can't handle this, how are you going to handle childbirth?” And I remember getting so angry

that I started cursing and was upset. I just remember thinking, “I have to deal with this like every month for years on end.” It only got worse. I went to the doctors and got Tylenol with codeine because my pain was so bad. By my senior year, I had missed, I think, like, close to 30 or 40 days of school in that one year because my commute was over an hour on the train, and it was just too exhausting to get to school sometimes. It was normalized for me because every woman in my family had to deal with pain and the expectation was to 

, I was rushing home from student teaching because I was so exhausted. I collap

my painful period never registered to me as a reason why I was so exhausted. 

I didn’t know then but I was disassociating from reality in order to continue going through life “normally” without acknowledging my body’s need for rest while I was bleeding heavily and battling menstrual pain.

When I started going to work after college, I had at least four incidents at four different jobs where I bled through my clothes. When I spoke to my mom she goes “Girl, you know you have to carry your change of clothes!”

I was blaming myself for not being prepared for extreme pain and heavy bleeding because that was just normal to me. I live in New York City, and taking the train was so hard. And by the time I started working, I was sitting on the train for so long and then having to stand for so long

 it added stress to my pelvis and uterus that I simply accepted.

I just planned my life around my periods. 

f I had an important meeting coming up, I would just pray my period would start on the weekend, so at least the first two days 

be painful at home, and then I could focus on work. But hose are your two days to get a break from work, and I was over here praying that my most painful experience happened then, so that I wouldn't miss work.

By the time I was in my early twenties, I was constantly taking ibuprofen. It was a crutch that I needed to survive. My PMS had started to come three to four days before my period. So now it wasn't just the week of my period. Now it was three to four days before I'm gonna have mild cramping, I'm going to be exhausted, and have migraines.

I got married, and I moved out of New York. I thought that would help lessen the stress 

. My mom and other women liked reminding me if I couldn't handle my cramps, I wouldn't be able to handle childbirth. So I was excited to get pregnant to have a child, but secretly I also wanted to know how bad childbirth was. In my family that was also a badge of honor to have birth without any pain meds, and I wanted to know 

In my first trimester in pregnancy, I was spotting and 

, and I was like, “Are you shitting me? This is the time I'm supposed to get a break.” The pain was so bad that my midwife sent me to the ER. I didn't think about it then as intergenerational trauma because I didn't understand epigenetics and how we can pass on stress hormones in utero. But when I wa

s getting the ultrasound to determine the cause of the bleeding, the 

ultrasound tech told me, “Hey, I'm not allowed to do this usually for emergency ultrasounds, but I need you to see the baby so you calm down.” I'm like, “I am calm.” She zoomed in and I saw my child curled into a ball on the screen and that was something that resonated with me. That's when I first started getting an awareness of how much stress impacted my body. She said, “Yes, the baby can feel your anxiety.” So I made a commitment. I decided to go all natural, to do yoga and monitor my stress to calm my body.

My last trimester was so painful that I couldn't work. My midwife would send me to the ER and 

, “Oh, it's just Braxton Hicks,” the false contractions

time she was technically safe to get out I was ready to get her out

, “No. This has to happen now. She's healthy, she's big enough, I have to get her out.” So I did everything suggested: I ate spic

 acupressure and acupuncture. And within 

 day, I went into labor. I remember driving to the midwife's house and timing my contractions. I 

kay, great, they're coming every five minutes

f my period was like this, it'd be so much easier because I could time it, and I'd know when it was coming

 every month with my period was significantly more painful and draining. Labor was

When I gave birth, I didn't even consider an epidural. It literally felt like my period. I had a fourth degree tear. I felt the pain externally, it was a different kind of pain. But for me, I 

’s startling that I silently dealt with that level of torture every month like it was nothing, so much so no one really knew the severity or impact on my overall physical and mental health.

 Pregnancy was the hardest part for me, because it went on for so long. 

I couldn’t relate to the stories I saw in the media of women yelling for epidurals. 

, I was committed to the breastfeeding journey, it was great for 

I’d get a break from my periods. My entire life 

 around my period pain or anticipating it. And so while I was breastfeeding, it was amazing. The first year I didn't even have my period. My daughter slept so well because I co-slept and it just felt like heaven.