Collage of a brown lacey uterus with beige ovaries and fallopian tubes, and red vagina, on gold cutout background with copper zigzags around the vagina, and tiny endometriosis lesions

Endometriosis

Vulvodynia

Interstitial Cystitis

pudendal neuralgia

frequent urination

pelvic pain

painful urination

Painful penetration

My name is Marie and I live in Los Angeles, California. My pronouns are she and her, and I'm a Caucasian European heritage. I’m 38.

I was a competitive distance runner starting in seventh grade. Seventh grade, eighth grade, ninth grade, 10th grade. I was running lots of miles. I was pretty mortified at 15 to not only not be getting a period, but also to not have developed.

I heard girls say, “The birth control pill made my boobs grow.” I thought that's going to help me. I thought, “It's going to help my acne, it's going to make my boobs grow. I'm going to have a period like all the other girls.”

They put me on a low-dose, low-hormone birth control pill at 15. I now know that what I really needed to do was probably to eat more fat. This was the late 90s when we thought zero fat diets were healthy eating, and we now know it is really damaging. I've since learned that the ovaries produce sex hormones, but in females, fat cells also produce estrogen, which is part of why development includes fat deposits that ensure normal health. I wasn't getting that. That was part of why I was such a late bloomer.

It's just really sad. If I just could have had some whole milk, I think I would've been okay. I was just exercising so much, and I had amenorrhea like professional athletes get. 

Years went by, and I became sexually active and I immediately started getting chronic UTIs. Within a couple years of becoming sexually active, I was diagnosed with interstitial cystitis.

I then had a cystoscopy, it was normal, but still I had terrible bladder pain. I was having to void 20 to 40 times a day and I couldn't sleep at night. They did some pretty crazy barbaric treatments for me with that. 

This is when I was 22, and I ended up stopping the pill and then I felt better. Then I lived my life again. I didn’t make an association at that time between the pill and my symptoms.  A couple of years later, I still had some frequency and pain, but I thought there was nothing else I could do about it. Of course, I tried the IC diet and I tried hydro-distention, which is where they blow your bladder up like a balloon. I had capsaicin installations where they put hot pepper extract in my bladder. It's horrific. You wake up and you're just on fire in your whole pelvic genital region. 

I got well enough after about a year of IC, and then I went to grad school. Then I went to Spain to teach English. I started getting UTIs again. Then I started getting yeast infections because of the antibiotics. For several months I was just constantly fighting a bacteria/virus/fungus of some kind, in a foreign country, and I was having painful periods and other problems.

I thought, “Oh, I'll go back on the pill because that's how we solve these problems.” I started Yasmin, a low-dose OCP. Soon thereafter, I thought I had another horrible bladder infection. The emergency room in Madrid said no. I was just like, “Oh my God, the IC is back.” I spent the next few months trying to get better in Spain and I failed, and I lost my job. I lost my health insurance.

I had to go back to California and move in with my mom and stepdad. I spent the next five years trying to unravel what the hell had happened in Spain that made me get so sick and caused the IC to come back. I did everything you can think of for interstitial cystitis and none of it helped. I also was diagnosed with PCOS at that time.

I just thought, what's underlying all this? During those five years, I did get a laparoscopy and they did find endometriosis. I had hoped that they would find a lot of it and that they would remove it and then I would be better, I hoped that endo was causing my bladder symptoms. Unfortunately, even though they excised some very small growths, and I did okay after the surgery, it didn't change my fundamental symptoms. 

The doctors were happy to slap on labels and then say, “We don't have any answers for that. You just have to live with it.” I was going to them saying, “What do people do for PCOS? What do they do for endometriosis? What can we do? What is behind this?”

I was monitoring how my symptoms worsened.  I looked at graphs of my hormone fluctuations.  My symptoms were the worst the week before my period. I saw that's when all your hormones drop (estrogen, progesterone, testosterone). Everything plummets until several days after your period starts, and they start to rise again. 

I asked to get my hormones tested. I was already in a pain clinic, a neurology clinic,  gynecology, rheumatology, urology, endocrinology etc, and no one had done this. I had sinus issues as well, so I was seeing an ENT, too. I had six different specialists and none of them helped me with anything. When I got the blood work done and it showed that I had almost no testosterone, extremely low free and total testosterone; the endocrinologist said it wasn’t an issue.

I was like, “Is this a problem? Is this why I'm so sick?” Everyone said, “We don't care about testosterone in females.” 

The first sign that I was getting close to answers was because I had this PCOS diagnosis, I had asked to be on a higher estrogen birth control pill several months before the hormone test, and it somewhat helped my symptoms. Prior to that, I had been taking a low-dose pill. The low-dose pill is lower in estrogen. What I learned in around 2016 was that the birth control pill can be linked to patients developing hormonally-mediated vestibulodynia. I was diagnosed with vestibulodynia during this time.

No one made any connection between vestibulodynia and my bladder symptoms. At one exam, a doctor was poking me in a circle at my vaginal entrance, asking,  “does this hurt?” I was like, “Yes, it hurts.” I had thought that was normal my whole life, to have a burning ring of fire at the vaginal entrance. 

In females, the vestibule tissue comes from the same embryonic cells as the bladder and the urethra. We have these cells, this type of vestibule skin that is the exact same as the bladder and the urethra. I heard a physical therapist refer to the vestibule as “exposed urethra.” This suddenly all made so much sense to me. That I had this vestibule thing; that it wasn't normal to have burning there, that it has all these glands that need hormones, and is related to the bladder. 

I got off the pill in 2016 and I did get a doctor to prescribe me vulvar estrogen replacement. I asked for vulvar testosterone too, because that's the really important treatment for hormonally-mediated vestibulodynia, and everyone said no. Currently, in the US there's no FDA-approved form of testosterone for females even though it's a fact that we need testosterone. Our bodies produce it. We know there's medications that cause it to tank. We know that testosterone deficiency has negative health outcomes for female people, but they've just decided that females never need testosterone replacement and restrict access.

Even without testosterone replacement, I got so much better just from quitting the pill and starting topical estradiol on my vulva. I started to almost live a normal life again. 

But I still had the bladder thing. Interestingly, no one ever mentioned a hormonal cause. Basically, by age 30, I had the hormone levels and the vulvar atrophy of a person in menopause. I'd probably lived for almost a decade that way because I never had enough sex hormones. I was throttling them with the pill starting at age 15, and I was on and off the pill until age 30. 15 years. 

I got a lot better in 2016. I had four or five years of pretty normal living. I was able to work full-time. I was able to wear pants. I was able to sit. I didn't have to pee 40 times a day. I could just take jobs and assume that I would be able to meet the requirements and not have my disability become a thing. I was able to date. I was able to be sexually active and have intercourse. 

I did still have pain and it inhibited me sexually. It made me feel embarrassed, not good enough, broken, and so I didn't tell people. When you’re hiding that pain, and trying to date someone, and then you want to have nice intimate times with someone you're getting to know, that stuff hurts. I didn't know what to do.

I didn't know how to tell people I didn't know well yet about this problem, that I don't know what the answer is, and I may have it forever. To me, the best strategy was just to not say anything and to just enjoy what I could, and then if I was going to be in a serious relationship, cross that bridge when I came to it. 

Prior to that, I was in a relationship. I think the illness at that time was worse. This is when I was still on the pill.

I ended up in an abusive relationship for three years. I ultimately had to get a restraining order against him. I know that part of the reason I got into that relationship is because he made me feel, at the beginning, that he accepted and loved me despite my illness and my symptoms. That was catnip. I thought, “I’m not going to find anyone else who will accept me like this.” 

I also didn’t leave him sooner because I didn't want to have to date again. Dating is terrifying with this issue. After that relationship ended, around the same time as I found that research about the pill and quit, my health improved, so I did end up dating again.

In my head, I thought, “I'm fine, I'm better, things are great,” but looking back, all of that pain, and having to keep it a secret, gave me anxiety around intimacy. I didn't meet anyone. I only dated and I never really got into another relationship because between my fear of being in another abusive relationship, and anxiety of having to tell someone I really liked that I have this horrible flaw, it just really impeded me from healthy, good connections. 

Even with the remaining pain then, now, I would do anything to go back to where I was in 2020, 2019 etc because I was just so happy. I moved to LA to pursue my dreams of performing, acting, and singing. I was getting out there, performing. I was around like-minded people. I was so happy to have been finally able to leave my hometown after I kept getting shunted back there because of health issues and other traumatic events.

When I moved to LA, I didn't even see a doctor for two years. For anyone with chronic illness, to not even have a doctor, is like, what is that life? We don't know what that is.  But even during my years of “nothing wrong” with me, I still got pneumonia twice and food poisoning twice.

I still had a fragile system, but I got better from those things. I came to LA, and then the week that LA locked down for COVID, March 2020, I met a man and went on some dates. I had sex with him and I got a UTI, my first UTI in a decade. I had the UTI test strips at home since the IC days, since it's really hard to know when its a flare up or an infection, and those tests can help.

Those pee strips are invaluable for people with these diagnoses. Sure enough, for the first time ever, the strips clearly indicated that I had an infection. I called my doctor's office. They prescribed me Keflex over the phone (an antibiotic).  They wouldn’t let me come in for a urine culture due to Covid.  Three days later I was still symptomatic and positive on my at-home tests. Clearly, it wasn't working. I googled Keflex and UTIs.  I found that it is not a recommended antibiotic for UTI!

It was the weekend at this point. I was miserable. I had a stash of my own antibiotics. The following is not something I recommend anyone do, but this was at the beginning of the pandemic and I was desperate.  I looked up ciprofloxacin, the antibiotic I had stashed away from my earlier infections. 

I took that and within 36 hours my bladder symptoms were better. The pee strip was almost clear. That was clearly an effective antibiotic for that bacteria. Then, of course, the next day I got my first yeast infection in 10 years. Again, they wouldn't let me in at the doctors. They just prescribed Diflucan, and I think it… kind of worked.

A week later, the yeast came back and I continued to have recurring yeast infections for the next, well, actually for almost the next year. For the first four months from March to June of COVID, I was still not allowed to see a doctor. The doctors on the phone said, "Well you can have a phone visit with a gynecologist." I was like, "No, someone needs to culture this and test this. I don't even know if it is yeast. How could it be yeast if I'm taking antifungals already?”

 I did everything.  I did garlic cloves up my vagina. I did tea tree oil. Because I was desperate, I did lots of Diflucan. They gave me lots of clotrimazole cream. I now know that those creams are really irritating. There's so many people in my support groups whose vulvodynia issues started with those anti-fungal creams. But that is all they would give me.

Then I was just starting to go crazy because they just were like, telling me to shower more and telling me not to sweat. I live in LA. It was summer. That's not a solution. No, you're not getting yeast infections because you sweat, or because you took a hot bath, or because you didn't shower for a day. People who don't have chronic yeast infections can do those things and they don't just magically get yeast overgrowth.

The doctors at my clinic were so dismissive of me, and the recurring yeast was really irritating that vestibule tissue where I already had pain. I had been okay with the vestibule irritation for several years, but the yeast was really reminding me, “you have this vestibule problem. This is a real problem, you know deep down that it's been inhibiting you from meeting someone and having a healthy relationship. Now the yeast is miserable and no one will see you.”

I ended up getting an appointment with a very well-known vulvovaginal specialist in San Diego who had actually co-authored a lot of the research that helped me get better from the damage of the low-dose birth control pill. He was one of the people supporting the use of testosterone replacement. 

He was very expensive, and doesn't take insurance, but I was desperate. No one else would see me. I went down to San Diego, and sure enough, he looked at my bloodwork, examined me and said, “You have vulvar and clitoral atrophy from low testosterone caused by the pill.” He used the tip of a Q-tip and said “the clitoris is supposed to be this size,” but that mine was like half that size, so the testosterone would help.

Then he also gave me boric acid suppositories for the chronic yeast. They did a culture but I had used Clotrimazole cream the night before, because I didn't know any better. I didn't know they were going to do a vaginal swab at my appointment. I just didn’t want to have yeast when when they examined me. The nurse who took the swab said, “I can't tell what's your discharge and what's the cream.”

They took the sample anyway, and they charged me like $250 for it. Then they lost it. They sent me the results back and it didn't even have the yeast test on the results and I had to call the office and be like, "That was the only thing I cared about. Where are the yeast results?" They're like, "Oh, the lab says it's negative." I was like, "I don't care what the lab ‘says.'  I want the lab report showing the results that I paid for." I never got it and unfortunately, that turned out to be very bad for me because I did in fact have a rare yeast, Candida parapsilosis, and this doctor never figured it out.

Candida parapsilosis is resistant to azole antifungals. Fluconazole, clotrimazole, miconazole. That's why the antifungals that I was prescribed for almost a year never helped, because the yeast I had was resistant to it.  Now, this “expert” sexual medicine doctor in San Diego, that I paid thousands of dollars to see, didn't ever think of this. He's the one who wrote a book that talks about how yeast is a cause of vestibulodynia and you have to treat it properly to recover.

The next six months I told him “the fluconazole isn't working, the boric acid isn't working.” The yeast spread to under my prepuce, under my clitoral hood.  Eventually, after months and months had gone by, and I'm still suffering from this, and I could still see it, I had to tell him, “You need to figure something else out. What else can I take for yeast?”

You try to trust doctors even if you don't want to. You tend to think that if there's a problem they'll know about it, they'll think about it and they'll be the ones to tell you why a medication isn't working or that there's other antifungals you can take.  But all these doctors dropped the ball.  I finally started nystatin, an antifungal, a year later, and that did get my symptoms of yeast to go away.

But I recently saw a new doctor. We're talking two and a half years after the first yeast infection. She did vaginal swabs, this was like just last week. I still have that yeast. I thought I was negative. I had some weird discharge and everyone just told me it was normal. This specialist that I saw was a little bit concerned that I looked a little inflamed, thought the discharge was a little weird.

I paid for these super-specific swabs, begrudgingly. I found out I still have evidence of Candida parapsilosis and I have another really weird one called Candida pararugosa and I looked that up and that's associated with long-term nystatin use! So I got a second rare yeast from the treatment that I tried for the first rare yeast,  which apparently didn't work to totally eradicate it?

I don't know how much this is playing into any current symptoms I have, but I'm really hoping. I'm trying a new antifungal, probably today. I'd never heard of it before. It's a brand new antifungal, brexafemme, so it's targeted to females with vaginal yeast.  It’s crazy that I could still be dealing with this issue 2.5 years later.

Anyway, back to San Diego, that doctor also gave me testosterone creams. Systemic and local, for the vulva and for the back of my leg. I continued to get the yeast infections while using that. Two months after I started, I suddenly had this horrible pain in my clitoris. I had some little twinges leading up to it. Like itchy, tingly, and I assumed that was the tissue getting healthy and growing, like the doctor said it was supposed to.

I don't think that's what was happening. I think what was happening is that I had clitoral adhesions. So the top of your clitoral hood, when you have atrophy, or lots of irritation from yeast infections, that skin can actually start to stick and cover the clitoris and you can't retract it. Then natural secretions, healthy normal things like smegma, get trapped under there.

In males, this is all common knowledge. Clitoral adhesions are called phimosis. It's when the foreskin gets stuck over the glans of the penis. It's very obvious. It's so much bigger so people know about it. They're going to pay more attention to penises. It is a thing, we know about it. We just don't really acknowledge that it can happen to female people. It happened to me. Then you get the smegma, it hardens and it turns into like little grains and they're called keratin pearls.

I think what happened to me is this doctor didn't diagnose me with the adhesions at my intake. He later said that they were visible then.  If he had told me about them at my intake, he also probably would have told me that I should clean under there. I should retract the prepuce and clean. That would have been important because I was starting the testosterone, which increases your secretions. That was why I had the problems, right? I was having increased secretions while I had the skin grown over the top of the glands.

Stuff was collecting back there, more than it used to for me, because of the testosterone replacement. He also bumped me up from 0.01% to 0.03% estrogen while I was having chronic yeast, and didn't tell me that it was more severe because of the medications I was on. 

I went to urgent care, I told them I had this pain that felt like a UTI but I didn't have any reason to think I had one. It felt like a yeast infection, but I was already on antifungals, so I didn't think it could be a yeast infection.

They didn't even look at my clitoris. They just looked at my vulva and vagina and they told me I was fine. I had to go back down to the specialist guy in San Diego, and he diagnosed me with clitoral adhesions and keratin pearls. 

For the inflammation from smegma, called balanitis in males, the treatment is cleaning and topical clobetasol, a steroid cream, to bring down the inflammation. This doctor did not suggest I try that. Another treatment is to take a hot bath. You try to gently pull your hood back to release the build-up, get it clean up under there, and then pull some of the skin apart. You can also use lidocaine, yourself, to numb it first. Those are some conservative treatments. He did not encourage me to do those things. He said I needed to do surgery with him.

I was in agony. I'd also just met someone that I was really attracted to, so I was like, “I’ve got to get better ASAP.”  So I had the lysis surgery with him. He took blunt nose scissors and he cut the skin from my hood on my glans. Yes, he cut me with scissors. I was not sedated. The anesthetic, it wasn't enough.

It was the most excruciating pain of my life. My legs were shaking in the stirrups. I was hyperventilating. The nurse had to hold my legs apart. Then he took tweezers and pulled out the grains and showed me them. I was validated, like, “Okay, this was real. I had little grains of sand rubbing me.” I left his office that day with a lot of hope, despite the real trauma of that   I thought I was back to the plan where I get cured of vestibulodynia and bladder pain forever, with testosterone replacement.

I thought that this had just been an unfortunate side event and I was going to start feeling better soon. In the next two weeks, as I healed from the lysis (and it was horrible because they injected my clitoris with a local anesthetic, and it was all black and bruised, purple) everything started to heal, except I had this pain on the right side.

He damaged my pudendal nerve.  It took me another year to get that diagnosis. The guy who did this, I had to sign a document saying that, “I agree this procedure could result in nerve damage.” Despite that, and knowing that it's the dorsal branch of the pudendal nerve that was innervating the area he was operating on, this doctor refused to acknowledge that he hurt me, and that I could have nerve damage. I never even got an accurate diagnosis. He had me go through some other barbaric treatments. He wanted to remove part of my right frenulum.

That was where the worst of my pain was. The last time I saw him was four months after this horrible procedure, and he was talking about crushing my frenulum with ball-nosed pliers/tweezers and then freezing it off. I was just like, “I'm not a guinea pig. What the fuck? You've already ruined my life and now you want to do experimental plastic surgery on me?” 

One of the hardest things about this was finding out that no one in the world does this lysis procedure except this guy and a couple other doctors. I spent the next two years trying to explain to other doctors what happened to me and they didn’t even know what I was talking about. No one's ever heard of this surgery. No one's heard of a "lysis of clitoral adhesions." He just led me to believe this was a totally standard, normal procedure.

He's really on the cutting edge of helping people. He performs vestibulectomies which is a surgery that I was looking into getting. He then started to push it on me at the time when I was suffering this clitoral pain for the first time in my life. I was like, “Are you insane? I have this horrible, constant pain. I'm not going to have a $10,000 invasive surgery right now for a separate issue.”  I would give anything to go back to just having vestibulodynia. Vestibulodynia was a walk in the park compared to what I'm dealing with now.

So I eventually got diagnosed with pudendal neuralgia. I've had pudendal neuralgia for the last two years. It's exacerbated my bladder pain. I had to go back on these medications that I had gotten off of five years ago. This would redo all the nightmare that I had 10 years ago, except now I have a new problem. Then, this is even crazier, within eight months of this right-side nerve damage, I developed a vaginal cyst on the left side.

One day I was doing physical therapy on myself trying to keep myself healing, trying to prevent my muscles from contributing to problems, and I felt this golf ball-sized thing. It was first misdiagnosed as a Bartholin’s gland cyst. This was much further back than the bartholin’s glands. It was more towards my groin. You could feel it from the vaginal entrance. That doctor amended her diagnosis but I ended up just dropping her because her mistake had put me back months with that clinic. Luckily I was being seen at another clinic. I was kind of two-timing at that time. They were able to get me in for an ultrasound and then surgery. They did a biopsy on the cyst and they said it had some hemosiderin. This is kind of weird and interesting. Hemosiderin is like a blood protein deposit, I think, and it's found with endometriosis.

Weird. They found this weird blood residue associated with endometriosis inside the cyst. It was benign.

I've then had pain at that area. I've tried a bunch of things in the last two years to try to heal and get my life back. A lot of things didn't go anywhere and were just shitty and painful. I recently saw my third or fourth physical therapist who really knows a lot about pudendal neuralgia and she said I have some fascial restrictions and thickened connective tissue and some muscle bands and tightness in my pelvic floor.

She also thought I had fascia problems where that cyst surgery was, because I've had localized provoked pain back there on the left side. The pudendal neuralgia pain on the right is constant and it goes from like burning and tingling, to shooting and stabbing.  It’s way, way worse when I sit. It radiates pain from my clitoris to my rectum, to my sit bone, all on the right side. I'm just been trying to stay hopeful with this physical therapist, that she can help me. I've had about eight sessions. I don't feel better yet.

I'm super impatient. I also still have had this yeast issue, so I'm going to start treating that just today, I think. Then when I saw this physical therapist, she said I still looked like I had vulvar atrophy from the pill. I saw this other doctor and started this testosterone cream again. No one will give me the systemic cream that affects your body's blood levels, but they're giving me some for my vulvar vestibule.

The idea is that if I'm still dealing with that, the vestibule tissue is still going to have pain, I'm still having some atrophy. Probably it's affecting my urethra and my bladder. Maybe all this continued pain and irritation is like causing pelvic floor tightness. Sort of inevitable, and maybe that's irritating my pudendal nerve? I currently have a couple of different plans of action that I'm really hopeful will result in some kind of decrease in symptoms and pain. I was really happy to hear that I still had hormonal atrophy, actually, because I had been thinking about that $10,000 vestibulectomy surgery and thinking how painful that's going to be and how it might worsen my pudendal neuralgia.

I found out that I still need to do more time doing the testosterone replacement. You really are supposed to use it twice a day for four to six months to give that tissue time to heal. Now, when I was being told by the doctor that I should get a vestibulectomy, I'd only been on it for two months. He was like, “You should feel better by now. You must have the neuroproliferative congenital kind of vestibulodynia. We should do this surgery now.”  And I was like, “I'm not going to get this surgery until I do what your book says to do.”  This guy wrote the book that suggests using testosterone cream for 4-6 months!

It was crucial that I questioned every doctor, that I disagreed with them, that I pushed them to try harder for me, that I dropped them for not helping me and found other people. That's horrible but that's the way things are. 

All the diagnoses that I diagnosed myself with turned out to be correct. I have been wrong  in thinking I didn't have problems. I thought I didn't have any pelvic floor problems because I'd seen like three physical therapists that couldn't find anything. When I saw an expert, she found a lot and I could validate it because she would push or poke or pull and I'd be like, “That hurts.” She's like, “That's not supposed to feel like that.” I had no idea.

I was wrong about thinking I didn't need PT. I don't know if it's going to help yet. I just hope that it will. I was wrong about thinking I didn't have yeast anymore. I was being told that there was nothing wrong by doctors and that my discharge was normal. I was being told, “no more tests for you.” Then I got this specialized microgenX test and it found stuff.

I was going along for years saying, “Well, I definitely don't have any more yeast. I definitely don't have pelvic floor dysfunction,” because I had been told I didn't have it. What I urge other people to do is just keep looking for answers. If you’re not getting better, don’t listen to your doctors say you have to live with it, unless it really feels right to you, or, unless you can really back it up with research.

Marie

name

placental abruption

lichen sclerosus

vulval cancer

Endometritis

Müllerian duct anomaly

Nutcracker syndrome

Fibroma

MRKH syndrome

perimenopause

Asherman's syndrome

amenorrhea

cervical cancer

post-ablation syndrome

Deep infiltrating endometriosis

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

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

heavy bleeding

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 