White lacey vulva collage with red lesions, on gold embossed metallic background

lichen sclerosus

Vulvodynia

cuts and tears (vulva)

labia shrinkage

burning

Itching

Painful penetration

labial resorption

clitoral phimosis

decreased clitoral sensation

tearing on insertion

white patches on labia

My name is Jaclyn. I was born in Canada and I currently still live in Canada, in Toronto. I am white, I use she, her pronouns, and I'm 36 years old. 

I started experiencing symptoms in my early 20s. The symptoms initially weren't too intense. They were more on the discomfort side of the spectrum. If I wasn't engaged in any sexual activities, then I didn't really notice anything off about my vulva. But the second I started engaging in sexual activities is when I started to think, maybe something is off here. What I mean by that is that any kind of penetration would feel uncomfortable to me. I use the word uncomfortable because pain doesn't quite capture what I felt at that point. When I would listen to my friends talk, I got the impression that sex was supposed to be more pleasurable, more comfortable, easier—unfortunately, this wasn’t my experience. There are a lot of narratives when we grow up around our sexual health and telling folks with vulvas what we should be feeling, and so a lot of that is like, “When you start having sex it'll be painful, you'll bleed.”  I think because I'd grown up in a society where those attitudes were so prevalent, I kind of dismissed the uncomfortability of it all and decided “that's just part and parcel of having a vulva/vagina—it'll get better, or it won't, and I just have to deal with it.” 

It wasn't distressing enough to signal to me that I needed to see a healthcare provider. However, with each year that passed, what was once uncomfortable started to turn into pain. My pain increased in severity as the years went by. Initially it was pain only during sexual activity and it would subside a couple hours after. So, if I was having sex with a person, maybe an hour or two after I would feel burning and aching and soreness of the vulva, but then it would just kind of fade. But as time went on, when I was around 25, there was no break; I was always in pain when sex was involved. Then I started experiencing the burning and stinging pain even when I refrained from all sexual activity. I didn't understand what was happening, but I now know that what I was experiencing was fissures and small tears in my vulva. Tearing and fissures occurred from sexual activity and from non-sexual activity. For example, if I was at the gym and I did a lunge, like a split squat, I would feel as if my vulva was tearing. I would feel as if certain movements would cause me to get cuts on my vulva, which, again, I didn't grow up in a society where there were a lot of narratives around what your vulva should feel like because talking about your genitals was considered shameful and taboo. Consequently, I had no understanding of what was happening to my body or if this was normal or not. 

I started seeing doctors once my discomfort turned into pain. I've probably seen over 30 in my journey to getting a diagnosis. I do think a part of the issue was that I would walk in there and they’d say, “what are you here for? How can I help you today?” And I would say, “My vagina hurts. My vagina hurts when I'm having sex.” So 1) I wasn't using the proper word to describe what part of my body was hurting, and 2) at that time, I didn't have a very extensive vocabulary to capture the nuances of how to describe pain. This is something I think people with chronic pain disorders learn very quickly is how to talk about pain because it's actually really hard if you think about it. If ever you have a friend or loved one who's hurting and they're like, “Oh, it hurts.” You're like, “How does it hurt? What does the pain feel like?” You often just get this frustrated response back like, “It hurts. It's painful. Why are you asking me what the pain feels like, it obviously hurts, that’s how it feels?” Using adjectives to describe your pain in a detailed and clear way is important for healthcare providers trying to make a diagnosis. For example, using the descriptor ‘dull ache’ versus ‘stabbing, throbbing pain’ can help providers rule out certain conditions and narrow down potential diagnoses. In fact, sometimes certain descriptors can tell providers exactly what is going on. In my case, unfortunately, I kept describing my pain in the most simplistic terms—it hurts—and, specifically, telling them the wrong part of my body hurt (my vulva hurt, not my vagina).

When the doctors actually would look at me—because often they wouldn’t examine me at all—they would say things like, “Your partner is probably too big, you look like a petite girl, you're probably just too small for them, or clearly you're very stressed. I think if you just calm down a little, you'll find that it's easier.” Of course, I got the, “Have you tried yoga?” I loved when they would ask me if I tried yoga because I’d literally be sitting there, in full yoga attire, with my yoga mat, strap, and bag propped up against the wall—like yes, I’ve tried yoga, in fact, I just came from the studio that I frequent 3x a week. The most upsetting thing I think a provider told me was to drink wine. First, a provider should never ever say this, right? It's so absurd and we laugh because we hear it all the time. This is particularly challenging for me as I had a history of substance abuse. Telling me—someone who had gotten sober—to use alcohol to mask their pain was incredibly problematic and layered in the painful ways in which this hurt me.

Now, I didn't take their advice, luckily, but it was definitely upsetting at the time. I definitely think had I used the proper anatomical term to describe where I was experiencing symptoms—my vulva—and had I used better adjectives to paint a clearer picture of the pain I was experiencing, I may have gotten diagnosed sooner. For the 50% of healthcare providers who did give me a clinical examination, I think they kind of just grazed over my vulva and put the majority of their focus into examining my vagina, since that was the part I was complaining about. So they would kind of tunnel-vision their focus on my vagina and say, “oh, nope. Your vagina looks great, I think you are just stressed and wound too tight”. 

Over the course of you know 10 years this was my experience, where the pain was getting worse and I would see a provider and they would tell me something along the lines of, “You're stressed, there's nothing wrong with you, just go on and enjoy sex.” It’s a problematic statement for a multitude of reasons. I would leave with no real answers. 

Later in my 20s is when it started getting really bad and began impacting my quality of life. Because as I was mentioning, now it was kind of moving from outside a sexual space to just every day, no matter what I was doing. Even if I was like, that's it, I'm going celibate, I'm going to become a nun, it wouldn't have mattered, I would have still been in pain and had issues. And so later in my 20s, I started experiencing vulvar itch on top of the burning and stinging pain, and it was something that wouldn't resolve with kind of over the counter yeast medications  or removing potentially offending chemicals or products. Nothing really helped. 

Another issue that I think I had with respect to getting my diagnosis was the fact that I was in grad school and I moved around a lot, which means I didn't have a consistent doctor following me from beginning to end. This meant I almost always say a new doctor every time. Each doctor was seeing me with fresh eyes and they didn't understand how long this had been going on and had no reference as to what my baseline—my ‘normal’ was. This meant no one was actually able to observe the changes in color, texture, and anatomy that were happening over time. No one taught me, “Hey, look at your vulva, know what your normal is.” I never looked at my vulva, so I had no idea and didn’t advocate for myself properly. But maybe if I had a doctor that saw me from 20 to 30, they would have realized eventually, “hey, her color's changing, the texture's changing, and she's losing parts of her vulva. I think this merits an investigation.” But again, as a graduate student, you just kind of go to walk-ins or you go to the university clinic, and the university clinic always has different doctors. So even though I would go to the same clinic, I never had the same doctor twice in that clinic, in my experience. 

In terms of quality of life, I stopped going out with friends because I didn't know how bad the pain was going to be. I didn't know if I could sit through the night. I'd be worried that I would be in too much pain from sitting or that I would constantly have to be going to the bathroom. Finding clothes that didn't aggravate my symptoms was a challenge. When I'm in my apartment alone, I can just wear a t-shirt and nothing on the bottom so that I don't have to deal with pain and irritation. But the second I leave my apartment, I absolutely have to wear clothes. I really just kind of became a recluse and withdrew from society and really only went out when I absolutely had to. I stopped working out, which was a huge passion of mine. I loved lifting weights and I just couldn't anymore. 

I was also doing a PhD at the time and it was really hard for me to concentrate on my work because as I'm working on my manuscript, I have these symptoms in my vulva that are just screaming at me. It was so hard to concentrate on building logical arguments when I felt like my vulva was on fire or I was going to scratch it right off. Nothing I did seemed to help. What make it worse was feeling so much distress and physical symptoms and having healthcare providers tell me I’m fine and it’s in my head because honestly, I really started to believe them. I thought I actually might be losing all sense of reality because I couldn’t fathom how my mind could literally cause my vulva to tear open.

I met my now husband around the time that I was finishing my PhD. Sex was complicated with him from the beginning. If we were able to have sex, then I would need like three to four days off to recover because I would tear. primarily at the fourchette, the base of the vaginal opening, which would cause a lot of pain both during and after sex. Afterwards, I would need to give my body a break for that tear to recover for me to then try again, which would tear it again and so on and so forth. And it was difficult with my husband, I think primarily because I didn't have a diagnosis, so I just had to tell him, “Something's wrong with me, I don't know what, doctors can't help me, they just tell me to chill out, but I tear, and sex requires more planning and more modifications than your average person.” And he was like, “That's okay, we'll work with that.” So thankfully, he was very, very compassionate and put my health first. But it was difficult because I couldn't really communicate what I needed because I didn’t understand what was happening to me. 

We got married and three months later it was my birthday. All I wanted to do was to  have sex like a “normal person” on my birthday to celebrate like lots of people do. I use air quotes here because I know there is no such thing as a normal person, but despite this, I just wanted to feel normal, so I forced myself to have sex. My husband didn't put any pressure on me, but I put it on myself because I just wanted my body to work. Unfortunately, that was one of the most painful experiences for me. After this we walked to my favorite restaurant, which is only about 20 minutes, and it was the most excruciating, distressing walk of my life. My vulva was just on fire, stinging, itching. I was like, “How can this be in my head?” And we got to the restaurant and as I was eating my favorite food with my favorite person surrounded by beautiful art and music and smells, I realized I don't think I can have sex anymore. I'm 31 and I don't think I can have sex anymore because there's clearly nothing wrong with me and it's all in my head and I can't fix it with my head, so I guess this is it for me. 

The next day I went on the internet and I searched something like sexual health clinics near me, and I found this clinic called Hassle Free Clinic in Toronto. And they were allegedly working in the vulvovaginal genital health space. They were very LGBTQ+ positive and seemed like a safe and knowledgeable space to go to seek help for what I was going through. You don't book an appointment, it’s first come first serve. They opened at 8, I was there at 7. I really felt, for the first time, hopeful, because I thought that maybe what I was doing wrong in the past was just going to regular kind of GPs and doctors who weren't specialized. And if it was all in my head, then maybe they could provide me with appropriate counseling to help fix whatever was going on in my head. 

They open up, I get called in, and I tell the doctor my history. She did examine my vulva as well as my vagina, so I’ll give her that. However, at the end of the examine, she stated, “Well, there's nothing wrong with you, but you might have multiple sclerosus, but there’s nothing I can do for you” and then she sent me home. That destroyed me again in multiple ways because 1) my mother had multiple sclerosus and it does have a genetic component. And so I thought, “Holy shit, like, do I have MS like my mother?” My mother had a very aggressive form of multiple sclerosus too. She was wheelchair bound and had difficulty with her vision, movement, and pain by the time I was 9 years old. So that's immediately the kind of imagery that comes up into my mind, thinking, “It's not just my vulva, I won't be able to see or walk.” She didn’t even refer me to a neurologist or even say, “Chat about this with your GP.” And so at that point, I gave up. I said to myself, “I’m through with doctors. There's no point.” Any glimmer of hope that I had had was completely squashed out on that day. 

A couple of weeks later, I went to see my family doctor (I finally got a family doctor after I completed my PhD). I have a couple of other chronic pain conditions, and so I was actually there for my low back, completely unrelated to my vulva, because I had given up. I had made an offhand comment about my vulva while we were talking about my back, and then she said, “Whoa, whoa, whoa, hold on, I'm sorry. We'll continue with your back in a second, but what did you say about your vulva?”. Now, in fairness, I did still say the word “vagina.” But, you know, I said, “Oh, like, sex is unbearable, I'm itchy all the time, I am burning, it feels like I have like a hundred paper cuts all over my me and someone is  pouring rubbing alcohol on it. I feel that all the time. But don't worry about it. I've had like 30 doctors tell me it's nothing and it's in my head and I just have to deal with it.” She looked at me and said, “Do you mind if I look at you? I'm your family doctor and I would like to be the one to tell you that it's nothing.” I replied, “Sure, what what's one more doctor looking at me down there?”

So she brought me to the other room, which has the chair with the stirrups and instructed me to undress and lie on the table. I think it took her one second of entering the room, looking at my vulva, and said immediately, “Oh, you have lichen sclerosus.” And I said, “I'm sorry, what?” And at that point, then she started doing a proper clinical exam where she got a little closer.

At this time my whole vulva, which should have been pink, had turned off-white, and I had lost all of my labia minora. My clitoral hood had fused completely over the glands of my clitoris. I was very, very scarred. I had active tears and cuts and that, coupled with my symptoms, she was like, “This is classic lichen sclerosus.” 

At this point, I'm panicking because I've never heard about this before. To me in my head, when it came to kind of vulvovaginal issues, you either had an STI, a yeast infection, and like that was it—other than menstruation and menopause, those were the conditions that people with vaginas could have. She tells me to get changed and meet her back in the other room. In the other room, she starts telling me about lichen sclerosus and I'll be honest, I don't know that I can tell you a clean retelling of what she said because I kind of dissociated. Like I kept coming in and out of my panicking, spiraling, and going completely numb and I couldn’t pay full attention. So whatever I tell you my doctor said, take it with a grain of salt because I wasn't fully present. From what I can remember, she told me it was autoimmune, that there’s often a family history, it can cause sexual dysfunction, increases my chances of developing vulvar cancer, and handed me an RX for Clobetasol and out the door I went. Now the second I heard “cancer,” that was kind of the end of my being present because now in my head as somebody with health anxiety, generalized anxiety, who's in a very vulnerable place, I was like, “I have cancer or I'm going to get cancer”.

In Canada, you have your GP who follows you in general, and then in instances where you have a specific condition, they refer you to a specialist. In my case, I was referred to a gynecologist, however, that wait time was 9 months. And 9 months may not sound long, but it’s agonizingly long when you have health anxiety. In those nine months, my mental health really, really deteriorated because I just, I had so many questions, and so much anxiety.

The same day that I got the diagnosis, my husband came home and I just sobbed as I told him, “We'll never have sex again. I have this disease,” and bless him because he was so understanding and he was like, “That's okay. There are other ways to be intimate. We'll work around this. Your health and comfort are the first priority, we'll focus on that first.” I couldn't have asked for a better partner to support me in this, but, I was very distraught because at 31 years old, I was three months into my new marriage. I didn't expect to be telling my husband, “No sex ever again.” 

I really developed very bad health anxiety. I thought that in the nine month wait, I would develop vulvar cancer because initially, the lichen sclerosus didn't respond very well to the steroids. I thought that the steroid was going to work for me in the same way that penicillin works for strep throat, which is couple pills, a couple of applications, and I'll start to feel better. That is true for some people with LS and steroids, but for the most part, it can take a few months for the medication to start working. And I think, had they just set my expectations and said that it can take a couple months for things to settle down, to be consistent, don't give up on it, maybe my mental health would have been better. But because I thought it was supposed to work right away and I wasn't responding, I felt, “Well shit, I'm not responding. In fact, I seem to be getting worse. Therefore, it must be vulvar cancer. Things will probably just progress and get worse.” 

These were not rational thoughts, but I couldn’t help but catastrophize. I stopped going out with friends; I stopped working out. I would actually dehydrate myself deliberately because it would sting when I would urinate because of all of the open cuts. I live in a very small apartment in Toronto. The walk from my bedroom to the bathroom is maybe six steps total. And that was even too far for me. I would even try to minimize how often I had to walk and move. I basically stopped living. Anything that brought me joy, I cut it out. I fully became bedridden with anxiety and depression. 

That said, I recognized and I knew I needed help. And I knew help needed to be more than calling a friend. I knew I needed professional support, that this was too much. I found a sex therapist because I wanted somebody that could work with the anxiety and health anxiety, but a lot of my anxiety had to do with feeling like I might lose my relationship, and the grief around losing parts of my body. That was a real thing to wrap your head around. No one tells you, “Oh yeah, parts of your vulva can completely disappear and reabsorb into another part.” That sounds like an alien, body parts absorbing the other body parts; I was completely and utterly unprepared for something like this to happen to me.

My confidence in my body obviously plummeted because I thought I was the most ugly, most disgusting, repulsive human being on this planet because of my vulva. There were so many issues that I knew I needed support with. Living in a big city does have its perks in that there are a lot of more specialized individuals, so I did find a therapist that worked with patients who had chronic illnesses that affected their sexual health. That changed my life completely for the better. I'm not saying it was miraculous overnight, but it was completely life changing. All of those issues, we just kind of worked on them little by little. It was very slow, very deliberate, and very healing. So that by the time I got to that nine-month mark, I was a little bit calmer, but still, still had a lot in me. 

When I went to that nine-month appointment, I immediately bawled, I could barely communicate with the doctor. Nine months is a long time for an overthinker to think of questions, so I think I had like 50 questions for this poor man and amazingly he answered every single one of them. Thank God I had them on a paper because I wouldn't have been able to remember them. 

Luckily it was not vulvar cancer and he said my skin looked pretty good—kind of impressive given I wasn’t applying my steroids properly. Normally you start applying it 1x per day for 1 month, and then slowly taper into maintenance of 2x per week and you would soak before to allow for optimal absorption. However, I applied daily—sometimes more—for the whole nine months without soaking and I would just kind of slap it on instead of gently massaging it into my vulva. For most people, this would be way too much steroids; luckily, I experienced no side events. But when I told him that he was like, “Oh, you can just drop down to two times a week, like you're in remission now.” He also said I had vestibulodynia, which is pain kind of in that vestibular area of the vulva when provoked, so when touched. Because he put a Q-tip there and I like about jumped and screamed off the table. So he was like, “Let's focus on the vestibulodynia and the pelvic floor muscles. But the LS itself is looking good.” I worked with a pelvic floor physical therapist and none of this happened overnight, but it did really help. 

He prescribed a topical medication for the vestibulodynia, and I also worked with a pelvic floor PT on that as well as the overactive pelvic floor muscles, because with all the medical trauma and 10 years of being in pain, my muscles were just like permanently locked, which is of course only going to exacerbate any pain that I'm feeling. We did a lot of breath and nervous system work; we didn’t do internal work until way later. It was all breathing, learning how to become in tune with the pelvic floor, desensitizing touch and kind of breaking that connection where the brain codes every touch as painful. It was only like, later on, did I start working with dilators. 

Today I am three and a half years in remission. I don't have any symptoms and I'm actually completely able to have penetrative sex again, which is really, really incredible. And I think that the reason I'm able to do this was treating my LS and treating the vulvar tissues and getting them healthy again, working with pelvic floor PT, doing that kind of brain desensitization work, the dilators, all of that, and just being really, really patient with my body.  So I know we want a quick fix where we just want our bodies to work immediately. That was not the case for me, but eventually I did get there. And it was really amazing because the first time I was able to (have sex), I cried afterwards, not because I was in pain for once, but because I actually never remember sex being completely pain free or being comfortable or feeling good. The best-case scenario for me was that it was just kind of uncomfortable. I don't have any memory of it being anything other than that. To go from the place where it was so excruciating that I told him we'll never do it again to being pleasurable, it was really outstanding for me. 

I think it took about 11 years to get my diagnosis, and then a couple other years to heal my vulvar tissue and get into remission. But it also took time to heal my mind and my body overall from just the trauma that kind of comes from being treated that way from the medical system and living with such intense symptoms while people are just telling you it's all in your head, you know, it's difficult. I remember when she said it's lichen sclerosus, as terrified as I was, I was also crying because it was one of the most validating things for me because I really did believe them. I really thought that my mind was so powerful that I was tearing my vulva open with my mind because I was too stressed, because I was wound too tight and I was a type A or whatever they were telling me. To hear, “Actually no, you do have a condition that is causing these symptoms. This is not just a manifestation coming from your mind. This is real.” it was simultaneously terrifying but also so validating and healing to finally get an answer. 

I think that's sometimes the hardest part is when you know that something in your body isn't right, but then all these authority figures are telling you, you're fine. There's nothing we can do. You're fine. I'm very grateful that I finally got that diagnosis and very grateful to be in a good place with my lichen sclerosus today, but it was definitely a journey. This is my story.

Jaclyn

name

placental abruption

vulval cancer

Endometritis

pudendal neuralgia

Müllerian duct anomaly

Nutcracker syndrome

Fibroma

MRKH syndrome

Interstitial Cystitis

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

Endometriosis

Ovarian cyst

PCOS

diagnosis

swollen lymph nodes

ulcers (vulva)

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

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.

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.