Collage of purple uterus with pink fallopian tubes and huge yellow ovarian tumor on embossed gold metallic background

Ovarian cancer

Irregular periods

heavy bleeding

bloating

pelvic pain

headache

vomiting

diarrhea

I can start from when I first got my menstrual. I was 13 years old, and living with my dad. My mom had had the conversation with me before I moved to live with him. I just remember thinking, "Oh my God, this is happening." I was actually really embarrassed by it, but I was able to go home and talk to my dad and my stepmom about it, and they were really great. 

I've never really had any issues with my period. I've never had any cramps. My cycle was at max three days. I never had any issues. I guess I'm one of the lucky ones. It wasn't anything that was was so horrible that it would stop me from doing anything. 

 I got pregnant at 19 and had my first son. Even then, my periods pretty much were normal, nothing really to worry about. I had my second son seven years later, and then I did start to notice a change in my period. It started to come a little bit heavier and maybe instead of three days now it probably was maybe four or five days, but still no serious cramps or pains. I've never had to buy Midol or take Tylenol to control the pain.

Once I hit my 30s, things definitely started to change and really started to be concerned about having pelvic pain and bloating. When I was 32, maybe 33, in the summertime, everything just started to go haywire. I had missed my period, so I thought I was pregnant. I took a pregnancy test, and went to the doctor, but everything was negative. I was like, "Well, where is my period?" It started this uncertainty. At the beginning, I thought, "Great. I don't have to worry about it this month. I don't have to worry about it next month."

When it started to become a pattern, I thought, "No, this isn't normal." I started to be concerned because I know this is your body's process of cleaning you out, I need this to happen. This is really important to me. I work in healthcare too, so I have that background education of how things work. I felt like, something's wrong.

One month, in September, I will never forget it, I saw the doctor because I was concerned that I hadn't gotten my period in two or three months. He said not to worry, it should be coming. They did a pelvic exam and saw that there was some dried blood. They thought that it was going to come and sure enough, it did come, but the problem was it stayed for a month. I bled every single day for a month.  I went back to the doctor and said that I'd been bleeding for two weeks. I'm like, "This is not right. I'm scared." I had never seen so much blood leave my body before, I was terrified, thinking I was going to bleed to death. I know better, but it's really shocking when it happens. His first response was, "I'll give you birth control." 

In the beginning, I was thinking, "What's birth control going to do?" I get it, a hormone will stop the bleeding. At the end of September, it got so bad that he ended up giving me some type of medication that stops all bleeding. I took that, but I was scared because I know one of the side effects is that it causes blood clots, so I was really terrified about that. October comes around, I'm still bleeding. I go back to see a GYN, but this time I see a new GYN because I don't want to see that guy anymore if he thinks birth control is going to solve my problems.

Throughout that year, I was going back and forth to the doctors, and then right before December came of that year, I went to make sure everything was going to be okay because I was flying to Florida for vacation with my family. I didn't want any surprises while I was there. They did a vaginal ultrasound, and told me everything was fine. 

 While I was in Florida, I started bleeding, it was clots dropping out. It was horrible. I was really scared that I was in Florida and my insurance isn't in Florida, my insurance is in Maryland. 

I talked to my mom and told her what was going on, and then I took a shower once I got home to clean myself up and just get myself together and go lay down. The clots just did not stop. They were clots as big as quarters. It was terrifying. I ended up going to the hospital. My iron was really low. I almost needed a transfusion. I ended up being there for three days.

I passed out. I think I had lost a lot of blood or something. No one was really sure what was going on. They were consulting everyone in the hospital. Finally, a gynecologist came in to do a consult and ordered some tests. 

They ended up telling me that I had a cyst on one of my ovaries. The cyst was bleeding, hemorrhaging a little. They think that was what was causing the bleeding, the awful clots. I came back home to Maryland, and I immediately made an appointment to say, "Hey, I was in a hospital in Florida, what's going on?" 

I find out when they did that vaginal ultrasound in December, they found a cyst, but no one made me aware of it. 

I filed a grievance with the health plan to say, "Hey, I feel like you withheld information from me. I should have known that I had a cyst because that could have been something I said when I first got to the emergency room. They were checking my brain, my heart, they were really trying to figure out what was going on. I had EEGs. 

I came back home to Maryland, I shared what happened with my gynecologist. She's like not to worry, and then eventually she says, "You probably have POCS, polycystic ovarian syndrome." She said, a couple of months later, I was diagnosed with adenomyosis.

I was still having this abnormal bleeding. At this point, I was going three, four months without any bleeding. The doctors just were like, "It's okay." For two years, now, these two years, I was going back and forth to the doctors trying to figure out what was going on, why am I no longer having a cycle. Even if it did show up, it would show up for a day or two. When it showed up, it was spotting, it wasn't a real cycle. I was really concerned.

When they ordered the vaginal ultrasounds, they could see that the uterine wall was thick, so it was collecting blood, but I just wasn't menstruating. I asked, "Well, what do I do?" They just kept giving me more birth control. That was the answer for everything. 

Eventually, last year, 2021, I really started having a conversation about, "This is going on two years now. When do we escalate this? When do we figure it out?" I started to question if I had cancer. I was reading about gynecologic cancers, and I was thinking maybe it's uterine cancer because that was the only one that really specifies abnormal bleeding as a symptom.

Abnormal bleeding isn’t listed as one of the symptoms of ovarian cancer, so I thought it was uterine cancer. Me and my gynecologist talked about it. She said she could do a biopsy if I really wanted, but she didn’t think it was necessary, because I was too young. That's all I really kept hearing, was that I was too young to have any type of cancer. 

I asked for the CA 125 test. The problem with that blood test, especially for ovarian cancer, is that it's not a really good indicator. 

I asked about hysterectomy. That was going to be my last resort because I'm still at a childbearing age, I'm not married. I didn't want to close all my opportunities of adding more to my family if there was a possibility for me. 

What she did end up doing was ordering a scan of my brain for my pituitary gland because that's the hormone gland thinking that that should tell us what's happening. She ordered some additional hormone tests, I think it's FSH, or something like that. Mine was so low. It was low as if I had never ever had a menstrual cycle in my life. That was concerning to me and a red flag to me. The pituitary gland was fine, but then during that scan, they found some additional fluid on my brain. That started a whole other process of medical concerns. The abnormal bleeding took the back burner because now they had to figure out what was causing the additional fluid. I had to get a lumbar puncture. It’s very painful. Oh my gosh.

The doctor that did the lumbar puncture said he had pulled off a lot of fluid.  I had been having really bad headaches, and he said, "That's probably why, because there is a lot of fluid here." I had to speak with the neurologist. 

All this was going on while I was still having this abnormal bleeding, and then we were in a pandemic, so it's just stuff on top of stuff, and I was still trying to manage work and taking care of my kids. I did the lumbar puncture in May, and then June, I just thought, "I need a minute to breathe and catch my breath about everything." In July, I started making appointments, again to start following up.

On August 1st, my life completely changed. I remember the night before, July 31st, my grandmother's birthday, was the 20th anniversary of her passing. I really use that day to reflect. I thought,  "I'm not cooking anything." I came home. I said, "Boys, what do you want to eat?" They said Chinese. I ordered whatever they wanted.  I ate my two egg rolls. By midnight the 1st, I was so sick. I was vomiting, I had diarrhea, I was sweating. It was really bad. I just had this really bad stomach pain.

I had no idea what was going on. I've had food poisoning before, it should be gone in a couple hours. Once you're finished vomiting, you should be fine. Now, it was day two. I was still on my hallway floor. My kids were like, "Mom, are you okay?" I just said, "Yes, I'm fine. Just leave me here." 

One of my friends came over to check on me, and was just trying to get me to drink, and I was scared because every time I attempted to drink water, I vomited it back up. It was horrible.

By 11:00 PM that night, I said, "You know what? It's time to go to the hospital because I think my appendix is about to rupture." The ambulance had to call around to different hospitals in my area to even find out which emergency room could take me because of Covid. I was in so much pain.

A doctor comes in, they order a couple of scans. He tells me it's a desmoid tumor. I Googled what a desmoid tumor is, and it's nothing. It's benign. It's nothing to be scared about, but I knew I would have to have surgery. For three days, I was in the hospital waiting for surgery because everybody was backed up. I remember before surgery, the surgeon coming to me, and I didn’t know at the time that he was oncologist surgeon. He told me, "We see this [tumor]. We see something on your ovary." He said, "I'll try to remove it, but if I had to take your ovary, I will take your ovary." I was like, "That's fine because I can live with one ovary gone." [laughs]

My mom lives in Georgia. My father's in West Virginia. They rushed to me trying to get here before the surgery. I remember seeing them before I went back. I remember signing, "I give permission for you to do whatever you need to do to save my life." 

I later learned that after surgery, I had to have three blood transfusions, I had to go to ICU, I was ventilated, had an NG tube. I had so many complications.

After I finally make it off of the ICU floor, I made it into a regular room. The surgeon came in and told me, "Ms. Alicia, I had to give you a full hysterectomy. I had to take everything." I said, "When you say everything, what do you mean everything?" "Everything. Uterus, cervix, fallopian tube, ovaries, and I took your appendix." 

I was by myself when he told me this, I didn't even know how to process it. I looked at my incision and saw that I was cut from the middle my stomach, all the way down, past my naval. He had told me he would cut me that way because he wasn't sure what he saw inside.

Maybe he did know it was cancer, but until he had a pathology report, he didn't want to tell me that, which I respect. 

They told me I had cancer. It was stage IA, which means it was just to one ovary. He told me that it was granulosa ovarian cancer, a germ cell. It's a sex cord stromal tumor, is my understanding. It's a rare ovarian cancer, that I'm very lucky and fortunate that they were able to catch it when they did. They took everything. He did say he saw some fluids, so he thinks he got everything.

 I didn't require chemo, but I’m missing the cancer recovery plan.  There was no conversation about menopause. There was no conversation about, "When you go home." The hospital care was just so horrible.

I just feel like I wasn't included in the conversation about me having a full hysterectomy. I don't feel like that was ever a discussion. I feel like I didn't get a choice in it. I still struggle with that a little. It's only been almost six months now, but I still struggle with not being able to say, "Yes, I'm all in. I wanted this hysterectomy. I have a plan for menopause, et cetera." I didn't have any of that. I still don't have a plan. 

I followed up with the surgeon. I know the statistics of ovarian cancer, and that it's oftentimes found late. They think that my prognosis is good. I should definitely survive five years. My recovery plan right now is that I have blood work, CTs, and pelvic exams every two to three months. That'll be my life.

On top of those complications that I faced in the hospital, I had to have physical therapy for six weeks because I was bed-bound for three weeks. It was hard for me to walk, and I had to relearn all of that stuff again. Not really relearn it, but to build up my strength and endurance again to be able to walk up and down steps. For a long time, I was scared to walk up and down the steps because I wasn't sure. I was 35 at the time, and discharged with a walker. I had to have a shower chair. My mom had to wash me.

To be this independent woman and now needing your mother to wash you, it really does make you feel helpless and hopeless. I was really trying to figure out, "What does this mean? When am I going to get to the point where I can do this for myself again?" A lot of my recovery for the first two to three months was just really trying to figure out how I gain my independence back. How do I become this independent person I was again? Now, I've figured that out, but now it's like, "How do I navigate being hot all the time? How do I navigate the fears that I have?" 

You really get wrapped up in that it no longer really becomes about you, it becomes about what happens to the people you love. Are my kids going to be okay? Have I taught them what they need to know to survive in this world? It definitely has been a struggle with trying to be positive and not worry about it's something that's going to come back. 

Right now, I'm definitely going through menopause, I'm definitely having hot flashes. I definitely can't sleep at night. One minute, I'm hot, one minute, I'm cold. I think I'm going to get a good sleep, and I'm on this new medication. That's really what this is now, it's just trial and error. I've been trying over-the-counter stuff to help with the hot flashes and my  mood. I just am not who I was before. Everything has changed for me, and it's just like, how do I learn to live with this? Is there something that can help me? It's really difficult. 

I really felt strongly that my healthcare team failed me. I feel like I was screaming and begging for help and asking for help and it was just ignored. Even though they tried to figure it out, and I feel like this is the problem here in America with our healthcare system, is that when a doctor doesn't know something, they won't admit that they don't know. They won't admit to saying, "I'm not sure, but let me refer you to this person, they have more experience than I do, or they dealt with more patients that have your symptoms."

I feel like that should have been done for me, and it wasn't. I feel like when I asked for certain screenings and blood tests, I should have got them and I didn't. That's why I feel dismissed. I feel like my cries went unheard. Not saying I wouldn't have had to have a hysterectomy, but maybe we could have started some treatment before the hysterectomy, or maybe we could have had the conversation where I could have prepared myself financially better for having a hysterectomy and preparing my kids about that and knowing what my recovery was going to be.

When I got discharged, they discharged me with 10 pain pills. By the second week, I was out of pills. I had my follow-up appointment with my primary care physician. She's a Black doctor. I thought that given that I just had a hysterectomy, and that I had this incision and that I was going through all of this pain that she would definitely help me, and give me some pain medicine. She gave me ibuprofen and spoke to me about the opioid epidemic.

She had been my primary care doctor for over two years. She knew I wasn't drug-seeking. She knew that the probability of me becoming addicted was so low. I'm the type of person that  doesn't like to take pills unless I absolutely have to, but was the most painful experience I've ever had in my life. I've had two C-sections, so I can think I can pretty much deal with pain, but not this type of huge incision. I still had two open wounds.

The surgeon left the bottom part of where the closure was, he left that open. The skin was open. I don't know why he did it that way, but that's what he did. I also had like a wound VAC, so I had to have a hole for that. I had two open wounds. I was in pain, and she only gave me ibuprofen. I just felt like, "How dare you?" This just proves my point that I wasn't receiving good quality care. I was just so disappointed in the healthcare quality system,  because I work in health care quality, that's been my background, I've always worked in quality and patient safety.

I have advocated for patients, I've educated doctors, I've educated nurses, I've worked in established programs in hospitals in my area. To receive the treatment that I did, I took it personally, and then I was more so devastated that I had dedicated over 12, 15 years in school and my career to try to improve this healthcare system, and here it is failing. Not only failing but failing me. I've contributed to this. I really took it personally. I definitely felt that, like I said my concerns were not answered, and I definitely feel my race played a role in it. I question how could this be? Why would it be?

Looking back, it's just I really do question. Was that the reason why? If I were white, or if I were Asian, would they have given what I asked for? Was I not trustworthy enough to believe that I might have an idea of what was happening with my body? Why wasn't I listened to and believed about what was happening to my body? Did it really have to take two years for this diagnosis? What else had to happen aside from my own body attacking and saying, "This has to come out now"?

If it wasn't for that, I don't know where I would be right now. I don't even know if I would be here talking to you. That's the part that's scary, and that's the part of why I want to share my story because you hear daily about people being mistreated, you hear daily about people having these pains, abnormal bleeding, or pelvic pain, bloating et cetera, and they're going to the doctor, they're seeking help, and they're being dismissed.

 With COVID and our healthcare system here in the States, it's falling apart. That's not what's on the news. We're talking about all the other things, but we really need to be talking about how our healthcare system is crumbling, and how hard it is for people to get basic care, even though we're paying this monthly premium for health insurance. 

I gave up time with my children to help the healthcare system. I worked to improve quality and patient safety, was involved with patient advocacy. I worked with doctors and nurses to improve safety with their patients. To be at that hospital with its decent reputation and receive such horrible medical treatment, it just felt really personal. People say they want a better health care system, but it really made me think that they don’t. It's just a joke to me right now, it just feels like that is just something good to say, that we want to have quality health care, we want access for everyone, but I just don't believe that anymore. I don't believe that that really is the goal.

Alicia

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

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

moodiness

fatigue

ovulation pain

pressure sensitivity

infertility

anemia

nausea

excess body/facial hair

pressure

constipation

bleeding or spotting between periods

bleeding after sex

back pain

menstrual pain

painful bowel movement

frequent urination

painful urination

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.

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.