Collage of a double yellow uterus that looks like a lily, with orange ovaries and a pink vagina, on a gold metallic background.

Müllerian duct anomaly

Endometriosis

Deep infiltrating endometriosis

Adenomyosis

bloating

nausea

pelvic pain

I'm from the United States. I live in Alabama right now. I'm 31, she/her.

I started to get periods when I was 14, around two or two and a half weeks apart. I was in really severe pain and my mom would just keep bringing me to my pediatrician who told me to take Aleve and lose weight and get some exercise. When I was 17, I went to the OB-GYN and they did an internal exam and they discovered I had two cervixes.

Then they had to do an ultrasound to make sure I had a Müllerian duct anomaly, specifically, uterus didelphys. I had one vagina and two cervixes. With a Müllerian duct anomaly or abnormality, you could have two vaginas, you could have one vagina, one cervix, two uteruses, you could have a bicornuate uterus, a unicornuate uterus.

That's why they had to do the ultrasound and they discovered that I had two completely separate functioning uteruses. Each of them only had one ovary. One ovary, one fallopian tube to one uterus. They said that was why I was in a lot of pain. I'm finding out now in my 30s, that that is not a reason. I was basically put on birth control, and it resolved a lot of the pain symptoms for a long time.

I would like to say that I hate how liberally birth control is prescribed to young women. It can be horrible for you and if doctors took even two fucking seconds to actually find out what your pain is like and find other ways to manage it and other safe sex solutions, it would be so much better. I was on it for 10 years, and it caused a lot of problems. I am bipolar as well and at the end of that 10 years, it really affected my mood. It probably did when I was younger too but I wasn't as in touch with my moods at that point.

I drank a lot and smoked a lot of weed when I was younger.  I wasn't taking inventory of my body at that point but I'm sure if I did, I would realize it was affecting my moods then too. Then in my mid to late 20s, the pain was getting really bad again. I was getting really painfully bloated and I couldn't figure out what it was. I thought I needed more probiotics. 

They told me to just get off birth control. I got married when I was 22, and we thought we wanted kids when we first got married but we decided after a few years that we didn't want kids. When you're a woman in your 20s and you tell a doctor you don't want kids, they're like, “Oh, I don't care about you anymore.”

In Colorado, I was basically just dismissed. They told me that I didn’t have uterus didelphys.  I was like, “I have been getting two pap smears my entire life. Are you kidding?” I had to drive three hours to Colorado Springs to go to an OB-GYN purely to get acknowledged for something that I had, but they still weren't very helpful.

They still wouldn’t really acknowledge my pain.  It was like, “Oh, you don't like your birth control symptoms, well, just stop taking it.” It was nothing. We moved to Alabama in 2019. My pain was horrible. I went a month barely eating because I was so nauseous and so bloated. I contacted the nurse practitioner who originally diagnosed me in New Jersey. She referred me to an endometriosis center in Atlanta. I got in contact with them and that's the first time someone told me, “You probably have endometriosis.” It turned out he was right. However, they don't accept insurance and I couldn't afford the $10,000 for them to check. I went to a doctor near me, still not knowing much about endometriosis. The doctor near me did an exploratory lap, but he didn't find anything. That man had no idea what he was looking for. I was like, “Okay, if you didn't find endometriosis, can you do a hysterectomy on me? Because if it's not endometriosis, I don't want periods anymore.”

He was like, “I don't understand your anatomy so I don't feel comfortable doing that.” I respected that. He referred me to a doctor in Tennessee and by the way, I would just like to say, I know, this is probably surprising, I've had the best care since I've moved to Alabama.

People don't like to hear that when I say that. I received shit care in Colorado. In New Jersey, I was too young to know anything so I don't know how it would have been there but literally, in Colorado, no one gave a flying fuck about me. I saw a specialist in Tennessee and I asked to do the hysterectomy and he was like, “I think the problem is the septum you have between your two cervixes. I think we should remove that.” I'm like, “While you're in there, can you remove my tubes?" He was like, “Yes, we can do that and we can do an ablation in the D&C so your periods are lighter.” He took out my tubes. He found a shit ton of endometriosis. He did the D&C and the ablation.

Two days later, I was pooping and I felt pain shoot up from my pelvis. I started to get a fever. I took Advil, my fever went down. Then my fever got up to 100 and I was like, “I think I need to go to the hospital.” This was during COVID, in 2020. Do you know how hard it was just to get in the fucking hospital door saying I had a fever? They were like, “Are you coughing?” I was like, “I just had surgery and now I have a fever. I have an infection. You need to let me in.”

She's like, “What surgery did you have?” I was like, “I had my vaginal septum removed. I swear to God, you guys need to let me in this fucking hospital. I don't have COVID.” 

Huntsville Hospital ER is amazing. They did every single test they could. They're like, “You're septic, so you need to be on antibiotics now.” I am allergic to penicillin and doxycycline, which are the two antibiotics that would just knock it out. One of my uteruses was perforated when the doctor did all that stuff. The gynecologist came in. He said, “Why did he do this surgery? This was really dangerous. He should've just given you a hysterectomy.”

I started bawling, “I asked for a hysterectomy but he said no.” He told me that I now had adenomyosis, and that I needed a hysterectomy, and that he’d do it for me.  I would just like to say, this is what I'm talking about I've gotten the best care in Alabama. There are doctors out there who would hear that I am 29 and have no kids, and had adenomyosis and would still not give me that fucking hysterectomy.

I had to stay in the hospital for four days. I go on still having horrendous periods, heavy bleeding, cramping, horrendous periods. When I'm able to have sex with my husband again, it hurts bad. I just get shooting pains all the time. I got an MRI, and a CAT scan because I didn't know that it was the adenomyosis. I didn't connect it. I just didn't know. I went to the gyno finally and he said, “We need to do your hysterectomy. This is not okay.”

I was hospitalized in November of 2020. I got the hysterectomy around May 7th, 2021. I lasted six months. Unfortunately, he's not an endometriosis surgeon. He's just a regular OB-GYN. I still stand by the fact that he saved my life. My uteruses were stuck to my intestines, my ovaries were stuck to my intestines. He said all of my organs and my pelvis are stuck together. He's not an endometriosis surgeon, so he said he unstuck what he could.

That was over a year ago. I still have pain. I am getting an excision surgery in December from a very reputable doctor in Chattanooga, Tennessee. He trained some of the individuals at the endo center in Atlanta, but he accepts insurance,  thank God. Also, I have two insurances now, so it should ideally be free. In the meantime, my ovaries have started failing. It's called POI when you are younger. 

I was having really restless nights. I was having hot flashes. I found out that alcohol is triggering them though, so I just cut out alcohol and I basically stopped having them. It helped the sleep stuff too. I gained a lot of weight around my middle. I'm a very active person too. It's been hard. I lift weights and I run. I tried to run a 50K, but I didn't make it, and that's actually when the symptoms started was during the 50K training.

I noticed I was really sluggish, just really having a hard time. My heart rate got really high. It's pretty typical for you to gain weight when you're training for longer distances, but this just didn't seem right to me. He's likely going to remove my ovaries during the excision surgery because it’s not worth it to keep them, because of the cancer risk. Could you imagine me trying to convince someone I had ovarian cancer? 

I think I'm just going to get my ovaries out. He said he'd leave it up to me. I'm probably just going to get them out, and then he's going to remove my appendix too, and fix the hernia on my belly button, from repeated surgeries. I'm looking forward to getting it done in December and getting the endometriosis out of me. I can't eat cheese right now because it gives me really bad flare-ups. I don't love cheese, but I like having the option. 

Things are a lot better than before the hysterectomy. Obviously, it didn't cure everything, but it helped a lot. My quality of life is better. 

I just want to get some misinformation clarified. The doctor at the endo center said that the presence of uterus didelphys in itself should not cause the pain I had. He said the fact that I was ignored so long was ridiculous. He did say that you’re way more likely if you have a Müllerian duct anomaly to have endometriosis.

It took me 15 years to get diagnosed with endometriosis. I would like you to know too when I found out I had two uteruses, I went to my pediatrician and told her, and she goes, “How was I supposed to know that?” I'm like, “You could have listened a little better when I told you something was wrong.” She got very angry and told me to leave.

I just have been medically gaslit my entire life. You can't let them all get away with it. 

I saw a specialist outside of Nashville a couple of months ago. She said, “You should just take birth control.” Are you really telling a woman who had a hysterectomy to just go on synthetic hormones? She is not an endometriosis specialist. That woman is an idiot, is what she is.

People need to advocate for themselves or need to reach out for someone to help them if they feel like they can. That goes for everyone. It's not just people with reproductive system issues. 

It breaks my heart to hear when people are too afraid to advocate for themselves or they just don't care to because we all deserve good care. We all deserve to have things recognized if something is wrong. Make sure you surround yourself with people who will listen to you, I think too. My husband has been very supportive through this whole thing. That's it. I hope people can surround themselves with people who listen to them.

Like I said, it's not limited to reproductive system stuff. This is for anyone, but it just seems to be more prevalent with the reproductive system stuff and endometriosis because endometriosis is not a reproductive disease but it just seems to be more prevalent that way. I just hope more people just start speaking up at the doctor. 

My friend asked me why I had the hysterectomy and I told her basically most of the story the other day. She was like, “Why don't you sue for malpractice?” I contacted a few lawyers and they told me no. It's impossible to get anywhere with a malpractice case. I called that doctor and told them I was having pain. They found out I ended up in the hospital and they never called me back again. They never called me back again. I realize not everyone is going to learn something, but I hope some doctors do learn from their actions, or just to listen. So many people's endometriosis would have been resolved if someone had just listened to them when they were 14. 

I keep saying women, it is a primarily women's disease. I realize that it might be wrong for me to say, but people don't listen to women. That is just a fact. People do not listen to women.

I wish doctors would listen more, but I don't think we're there yet, I guess.  Some do. The doctors I've gone to recently have listened to me, but I think I've also gotten better at screening doctors before I go to them. That might also be it too. People just don't know what to look for when they're choosing a doctor a lot of the time. 

OB-GYNs learn about babies and they learn about delivering. They care very much when a woman wants kids and can't have them, but they do not care about women who don't want kids. Honestly, once a woman has kids, they don't really care much for that woman either. 

 Endometriosis has obviously been around forever but we still don’t know much about it. It makes a lot of sense why your project is called The Hysteria Project, I guess, because clearly, I'm hysterical. It takes far too long to get diagnosed with anything.

Carly

name

placental abruption

lichen sclerosus

vulval cancer

Endometritis

pudendal neuralgia

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

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

excess body/facial hair

pressure

diarrhea

constipation

bleeding or spotting between periods

bleeding after sex

Irregular periods

back pain

menstrual pain

painful bowel movement

frequent urination

painful urination

heavy bleeding

Painful penetration

symptoms

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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.