Solange

Joan

Macarena

Alicia (she/her, 36, Black, lives in US) with ovarian cancer

Alicia

Christina

Carly

Annelie

(55, she/her, white,  from US, living in Germany)

Suzanne

Testimonials

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

Deep infiltrating endometriosis

undiagnosed

PMDD

uterine polyp

hydrosalpinx

Ovarian cancer

dysmenorrhea

cervical polyp

fibroids

menorrhagia

Endosalpingiosis

endometrial cancer

Adenomyosis

Endometriosis

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

insomnia

weight loss

leg pain

joint pain

numbness

shoulder pain

shortness of breath

abdominal pain

rectal pain

asymptomatic

fever

acne

hair loss

night sweats

vomiting

moodiness

fatigue

ovulation pain

pressure sensitivity

infertility

anemia

headache

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

Die Beauftragte der Bundesregierung für Kultur und Medien

Neu Start Kultur

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.

I had gained a lot of weight. I was like 200 pounds by the time I gave birth and I'm only five two. I felt so self-conscious about my weight, but other than that, I was 

Breastfeeding hurt too, but it didn't matter. I had her 

beautiful chunky cheeks and baby smell to keep me going. 

I was fine. I was safe. I felt great because I didn't have my period.

And then after the first year, a woman who I went to the birth class with told me she got her period and I was like, “all right, it's gonna come.” Cause she gave birth like a week or two after me. I think it was another three or four months and then my period came back but my pain wasn't that bad. At the time another family member came to live with

us, and I remember noticing when she had her period, she didn't have pain. It never occurred to me that 

 “This is amazing.” I was buying into all of the really stupid myths about period pain, that after you have the baby, maybe that will get rid of it. So I thought that maybe this was it, that I wouldn’t have period pain anymore.

And then October 31st, 2021, Halloween, my period pain came raging back after 

. I got my kid dressed and I was so excited but I was so exhausted. That's when I noticed the pain again. But I recognize now too, that I had been so used to pain

the warning signs had started months before but I just 

believe so badly that my painful periods weren’t coming back. 

the pain again, I had enough notes to look back at the past pattern of my menstrual cycle.

I knew that this time felt drastically different. 

I was like, “What is going on? I can't do this anymore.” Usually, I tough things out. But

, “I have to go to the doctor.” So I made an appointment.

The next week, I went to my primary care physician

, “This pain feels really different. It's on my right side.” And he checked me out and he goes, “I think you need to go to the ER. And I was like, I'm not going to the ER.” It was during COVID. I just wanted to go home to my baby. He 

think it's either appendicitis or endometriosis.” Prior to that, I hadn't ever heard of endometriosis. It terrified me, 

 “This is another thing to deal with, with my stupid periods.” I didn't want to keep dealing with this. And it was really heartbreaking. Looking back, I didn't realize how much I was putting on a brave face. So I remember he was like, Do you want me to call the ambulance or drive yourself? And I was like, “I'll just drive myself.” 

, why didn't you call the ambulance? He was very concerned. He was more concerned than I was, because I 

was more concerned about it costing too much money and not being perceived as hysterical than my own pain.

 to the ER and they ran a bunch of tests, they did an ultrasound,

 it was another cyst, and constipation. And I was like, “Why am I in the ER for this?” And I was angry because

hearing them say that, and the pain I was feeling, it didn't make any sense. I remember specifically telling the doctors

this pain felt like nothing ever felt before. I've felt constipation before. Every woman who has painful periods knows how to deal with that. I knew what it felt like.

From October all the way till June, for eight long months, I was in and out of the ER. I was in and out of doctors’ offices, doing research online, trying to figure out what 

 with me. I started to have pain after my period, then I started having pain a week before my period, then it turned into having pain all month long on the right side. I 

t to my family and friends compared to those of doctors.

This was the first time having to deal with managing this pain and then taking care of somebody else. Luckily we were blessed to work from home and I was able to be home that entire time, but I was just so exhausted. I kept working and trying to be normal and taking pain medication. Ibuprofen and acetaminophen were not doing anything anymore. But 

after I got a concussion from slamming my head into a pole at the park, I reached a breaking point.

 I started taking medical marijuana because it was legal in Illinois.

I knew from other members of my family, how much it could do to your brain and so I never wanted to use it regularly. I see now how desperate I was, and how I think the doctor took my pain more seriously because marijuana is not something that I wanted to use. W

Because of the possible hormonal impact, endometriosis became the primary diagnosis concern.

but my sleep was disrupted because I was in so much pain. Then I was up at 10 or 1

to be with my kid all day. It probably made my pain worse by staying up so late because I was not getting any of that restorative sleep. By May, I'd had enough. I was in so much pain, I started to think weird things. My head was pounding from the migraines 

I was in so much pain I had to keep going back to the ER. They kept telling me it's just constipation. By that time, I also had already had a colonoscopy. I had done multiple ultrasounds, and tho

usands of dollars on tests that turned out “normal”. 

Every time I was just dismissed. They pumped me with so much stool softener, laxatives, ibuprofen, acetaminophen, and then I tried all natural routes with probiotics, fish oil, multivitamins, even Chinese herbs from my acupuncturist. I had so much medication in my body on top of the marijuana.

Looking back, it is understandable why I had a crisis. But in the moment, I was just so desperate to get pain relief and feel 

 again. I was just taking whatever was given to me, and not keeping track of it. Finally, in May, I got my surgery date booked to do a diagnostic laparoscopy for endometriosis on June

 I was so far gone because I had all this medication in my body. I'm still trying to take care of my kid. I was trying to figure out who could come to help take care of me. It was 

much pressure. Then we were also trying to move and sell the house, and at the time, my husband was switching jobs. All the life altering circumstances that were happening at the time was a little recipe for disaster. 

up how much the pain was destroying my sense of reality.

 The rest of me was falling apart, but no one could really see it because I was just so used to 

In May, I called my primary care physician, 

e did a video conference and he was like, “This has been since October. I told them about your appendix and now I've had enough.” So he had to call my gynecologist office. They moved my surgery date from June 22nd to June 3rd. In that moment, I felt relief and I was excited, but then a part of me was so broken because I'm like, “Y'all had all this time, you had an operating room available and you were leaving me in pain for another month.” It was so hurtful, like I lost trust in everybody. I had a black 

 gynecologist, I was asking all the right questions. I did everything that was told to me online to do like advocating for myself, keep calling back, making sure I’m documenting everything. I did all of that. And my surgery was still delayed.

By the time June 3rd came, I was suspicious of everybody. I was having a mental health crisis because people kept downplaying 