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I want to start this post by saying something that most people won’t say out loud:
There were nights I laid in bed alone, bleeding through everything, in pain so severe that no medication touched it, and I didn’t just want the pain to stop. I wanted everything to stop. I was ready to be done. Not because I wanted to die but because I genuinely could not imagine surviving one more month of what my body was putting me through with no end in sight and no one who seemed to care enough to actually help.
If you have endometriosis you already know exactly what I mean. And if you love someone with endometriosis and you’ve never understood why they seem so broken during their period, I hope this post helps you finally understand.
This is my story. All of it. The parts that are hard to say and the parts that feel impossible to explain to someone who has never lived inside a body with this disease.
And at the end of it I’m going to tell you what finally, after decades of suffering, gave me my life back.
It Started on July 7th, 2002
I know the exact date because my mom got married on the 4th of July and three days later I was sitting on a toilet staring at red on my toilet paper, terrified and unable to get up.
I was 12 years old. One moment I was just a normal kid doing normal kid things and the next I was crying, screaming, running to my mom who had just gotten out of the shower yelling “I don’t want to grow up, I don’t want to grow up, I started, I started” because I couldn’t bring myself to say the word period out loud. I felt like saying it would make it too real.
My mom laughed, though she tried hard not to. In hindsight it was funny. In that moment I was terrified. And as it turns out, I had every reason to be. I just didn’t know it yet.
The Years Without Pain and What Was Hiding Underneath
Here’s something that makes endometriosis so cruel and so misunderstood: it doesn’t always announce itself right away.
For years after my first period I had almost no symptoms. No pain. No cramps. The only sign I was on my period was the blood. I thought I was one of the lucky ones.
It wasn’t until I was 20 years old, sitting in a follow up appointment after emergency surgery, that a doctor used the word endometriosis in front of me for the first time. She pulled out photos of my insides and pointed to what she described as “weird looking stuff on everything.” She explained what endometriosis was, that it had been growing silently in my body for years before I ever felt a single cramp. Nobody in my family or circle of friends had ever heard the word either.
She asked about my period symptoms and I told her the only symptom I had was the blood. No pain. Nothing else. She explained what to watch for and what to expect as time went on.
She was right to warn me.
Three Times I Was Pregnant. Three Times I Wasn’t Anymore.
I want to tell you about three pregnancies because they are part of my reproductive history and my reproductive history is part of my endometriosis story. The full picture of what this disease took from me doesn’t make sense without all of them. They aren’t footnotes. They are part of why I’m telling this story at all.
My daughter.
I was 15, two months shy of 16, when I got pregnant for the first time. I had only had sex three times. I carried her for five months.
What happened during those five months is one of the hardest things I have ever put into words. I developed sepsis from a kidney infection caused by reversed ureters, a condition where the tubes that carry urine from the kidneys to the bladder are positioned incorrectly, meaning infections can develop without the usual warning signs like burning or urgency that would normally send you to a doctor. My urine was dark brown and smelled terrible and my doctor ran a test and told me everything was fine. Two days later I was in the hospital with a 104 degree fever that my body somehow didn’t feel, still going about my normal day while my mom insisted something was wrong.
That hospital visit became a blur of transfers between hospitals, each one saying they weren’t equipped for what I had. On one of those transfers, being wheeled out to an ambulance, I looked at my mom and said “I love you.” We had a rocky relationship. Those words weren’t common between us but I meant them completely. They were the last words I said to her for two weeks because in that ambulance I lost consciousness.
I woke up briefly at one point surrounded by medical staff. A doctor came in, said nothing to me, and told a nurse to terminate the pregnancy. A nurse beside me saw the tears pouring from my eyes, pulled him out of the room, and I can only imagine what she said to him. I was unconscious again almost immediately.
A different doctor advocated strongly for an airlift to one of the best hospitals in the country. That’s what happened. I was in a medically induced coma for two weeks. I had coma dreams, all of them about being stuck, which feels like its own kind of poetry.
The hospital did everything they could. They told my family to prepare for the worst. On July 15th at 3:15 in the afternoon, after my mom and sister had stepped out for lunch, my body released my daughter on its own. The nurses found her under the blankets when they came in. Two days later I woke up. No one said anything. I reached down and felt my stomach and I already knew she was gone.
She has my initials. ACK. And my middle name.
I walked out of that hospital a few days later, wobbly and weak but walking and alive. I wasn’t supposed to be.
The ectopic pregnancy.
A few years later I was 20 when I got pregnant again. I knew because I ate two tuna sandwiches back to back and I don’t like fish. The test confirmed it. I told my boyfriend, who I had just broken up with days before. We got back together. I was at his place for the weekend when we got into a physical fight. At one point he picked me up and my stomach slammed into his shoulder. I felt a pop. No pain, just a pop.
The cops came and arrested me because I admitted to spitting on him. After everything he did to me physically I was the one in handcuffs. I told them I needed to go to the hospital because I was pregnant. The cop took me reluctantly and with an attitude, sat with me in the waiting room while I was still in handcuffs, and the staff treated me like I was wasting everyone’s time.
Twelve hours passed. I was ignored, dismissed, and made to feel like I was lying the entire time. Then a doctor I had never seen before came into my room, calm but with absolutely no patience for what she was walking into. She was the on call doctor and nobody had called her in until that moment, twelve hours after they already knew what was wrong. She told me I needed emergency surgery immediately. I had a ruptured ectopic pregnancy. That pop I had felt back in the late morning, hours and hours before anyone bothered to call the doctor who could actually help me, was the moment it ruptured. I had been sitting in that hospital bleeding internally for over half a day while the people responsible for my care did nothing.
She was the only one who fought for me that night. At my follow up appointment she was still angry on my behalf. She had filed formal complaints with both the hospital and the police. She asked about my period symptoms and when I told her the only symptom I had was the blood she pulled out photos of my insides from the surgery and showed me what endometriosis looked like growing on everything. That was the first time I ever heard that word.
She explained that the endometriosis had wrapped itself so tightly around my fallopian tube that my pregnancy had nowhere to go. That’s why it stayed and ruptured. The disease had been growing silently in my body for years before I ever felt a single cramp.
I never heard from him again. For all he knows he has a child somewhere in the world. I eventually made better choices in people.
The miscarriage.
The third loss happened when I was 21 living in California, alone, exhausted, and already too broken to absorb much more.
I took a pregnancy test and it was positive. I didn’t tell anyone. I was too tired. Too worn down. Living with my sister and bad roommates, one of whom had already stolen the check my mom sent so I could go to phlebotomy school along with the little cash I had saved. I had nothing left to give the news.
A couple of weeks after that positive test I woke up between four and five in the morning to blood. Not a little blood. What felt like gallons of it. It was on my blankets, my sheets, the floor between the bed and the bathroom, all over the toilet. I hid the bathroom rug in my closet. I still don’t fully know why. I just didn’t want anyone to see it. Everyone was still asleep and I sat on that toilet alone in the early morning quiet for a long time, not crying, just sitting. Already knowing.
When I could finally get up I cleaned everything up by myself. Quietly. While the house slept around me.
I never went to the doctor. I just let my body do whatever it was going to do. I took another test a few weeks later and it was negative. I dealt with it alone and in silence and I moved on because that was the only option that felt available to me at the time.
That was the last time I ever got pregnant. I have been with my partner since California, 14 years now, the one who got me out of that house with the bad roommates, and in all the years since, including the times I was trying, I never got pregnant again. Endometriosis had other plans for my fertility and it carried them out quietly over years while I had no idea what was happening inside my own body.
What the Pain Actually Felt Like at Its Worst
For years after my diagnosis I still had no pain. But endometriosis doesn’t stay quiet forever. Slowly, gradually, it announced itself, and when it did it made up for every year of silence all at once.
I want to try to explain this to anyone who has never experienced it because I think the reason endometriosis is so dismissed is that most people have no frame of reference for this level of pain.
Words genuinely fall short. But I’ll try.
My thigh. Always my right thigh first, heavy and dense with a deep aching pain that lived in my bones. So intense that I would punch myself there, hard enough to leave bruises, just to feel a different kind of pain. Something I could understand and locate. Something that wasn’t the shapeless internal agony I couldn’t reach or escape.
My pelvis felt heavy and pressurized, like my insides were trying to push their way out. My lower back ached the same way as my thigh. And then there were the shooting pains, hot lightning bolts that would travel from my lower stomach up to my chest or sideways across my body with no warning and no predictable path. Just a bolt of something electric and burning looking for a way out, sometimes stopping quickly and sometimes lasting so long I had no choice but to sit in it and wait and try not to take it out on anyone near me.
And then there were the electric shocks in my asshole. I’m going to say that plainly because it needs to be said plainly, because every woman with endometriosis who has experienced this has spent years not saying it and suffering in silence and embarrassment over a symptom that is real and common and absolutely nobody warns you about. Without warning. In public. At the grocery store. While holding something. While talking to someone. A sharp electric shock with no telling how long it would last, no way to prepare, no way to explain what was happening to your face while you tried to keep walking in a straight line and not drop everything in your hands and not drop to your knees in the middle of the cereal aisle.
The hemorrhaging meant I never trusted my body. I could be bleeding normally one day and hemorrhaging the next with no warning. A super tampon and period underwear soaked through within an hour or two on bad days. I stopped wearing white. I stopped leaving the house from the start of my period until several days after it ended just to be safe.
I crawled to the bathroom. Literally on all fours because I couldn’t stand up straight and I knew I was bleeding through everything and I needed to get there and I couldn’t walk.
I laid in bed alone for many of those years because my partner was an over the road truck driver who was gone for 28 days at a time minimum. Just me and the pain and the heating pads, three of them because one was never enough, rotting in the fetal position and bleeding and waiting for it to be over.
Sex became something to survive rather than enjoy. There were positions I couldn’t tolerate because they felt like death. Angles I had to negotiate. Times I had to stop entirely and cry. And then I would pay for it the next day or two with intensified cramping and endo belly so swollen and tight it felt like my skin might split.
The endo belly meant clothes were impossible. Jeans caused pain from the pressure. Leggings dug into my stomach. Nothing fit the way it should. I looked visibly pregnant, which was its own particular cruelty given what this disease had taken from me. Eventually I started wearing maternity clothes because they were the only thing that didn’t hurt. Being asked how far along I was in maternity clothes when endometriosis had taken my fertility was a specific kind of pain I don’t have a word for.
And then there were the normal interactions. The hair salon. The stylist making conversation. “Do you have kids?”
Do I say no? That feels like lying. Like erasing my daughter.
Do I say yes? Then come the follow up questions I don’t have answers to because I didn’t get the milestones. And if I explain she died the stylist feels terrible and I feel guilty for making them feel terrible and the whole thing becomes something neither of us knows how to navigate.
So I say no. And they say “lucky you” or “good choice, kids are hard” or “you better get on that, time is running out.” Not knowing I would give anything for the hard days. Not knowing my time ran out before it even started. So I sit there quietly, waiting awkwardly for the appointment to be over, not mad at her, just hurt by everything I didn’t get to have.
Endometriosis doesn’t just affect your body. It reaches into every ordinary moment of your life and changes what those moments feel like.
What Doctors Did and Didn’t Do
The first treatment I was offered was the Depo shot. I was told it might cause five to ten pounds of weight gain and would stop my period and slow the growth of the endo. I was already about ten pounds underweight.
I gained sixty pounds in three months from a single shot. And it did not stop my period.
I went on the pill next and was told to skip the sugar pills so I wouldn’t bleed. Instead I bled nonstop for two months straight. I swelled so much I couldn’t use tampons. Nothing stopped the bleeding until I stopped taking the pills. After that I was done trying for a while.
Later in life when I brought up endometriosis to new doctors I was asked more times than I can count “what is that?” I had to explain my own disease to the person I had come to for help. I don’t fault anyone for not knowing something, asking questions is how you learn, but it did mean that appointment wasn’t going to help me with my endo so I’d leave it alone and deal with whatever else I was there for.
One doctor told me the only option was a hysterectomy but that I was too young to get one. We now know that wouldn’t have resolved the endometriosis anyway, it would have just sent me into immediate surgical menopause. The excision surgery, the one actually shown to help, was only being performed properly by a handful of surgeons in the entire country and cost upward of twenty thousand dollars out of pocket because it was considered elective. And you’d eventually need it again. And again. That was never going to be an option for me.
So I researched. Tried things. Hit walls. Gave up. Researched again. And eventually accepted that this was just going to be my life until it killed me, whether that was by my own choice or by an organ strangled so slowly I didn’t notice until it was too late.
I want to say something here about the way endometriosis deaths are recorded because it matters and nobody talks about it. Endometriosis can grow on and around virtually any organ in the body, the appendix, the bowel, the bladder, the kidneys, the lungs, even the heart. When a woman dies because endo strangled her appendix to the point of rupture and she didn’t go to the emergency room because that pain was less severe than her everyday endo pain, it gets recorded as death by appendicitis. Not endometriosis. The same happens with every other organ it touches. The disease gets erased from the record and the cause of death becomes whatever organ finally gave out, not the disease that spent years quietly destroying it. If these deaths were recorded accurately we would have far better data, far more urgency, and far more answers than we do. The disease is killing women across every system in the body and we aren’t counting them correctly.
What Finally Changed Everything
I want to be honest about the diet advice because I’ve seen it all in endo groups and late night pain induced searches. Carnivore diet. Anti-inflammatory diet. Gluten free. Keto. No sugar no dairy no joy. Everyone contradicting everyone else, arguing that what worked for them is the only truth. Food has always been complicated for me and the idea of restrictive eating with foods I already knew I didn’t like felt like one more thing designed to make me miserable. I did stop drinking soda and lost fifty pounds and noticed some reduction in pain. That was real. But it wasn’t the answer.
The answer came accidentally.
I started taking Optimal Magnesium by Seeking Health for a completely different reason. I wasn’t expecting it to touch my endo pain at all. I wasn’t even thinking about my period when I started it.
The first period on magnesium was still painful but I could function. That alone was remarkable.
The second period was less painful than the first. No hemorrhaging. Less bleeding. I could leave the house briefly. I still wasn’t fully convinced it was the magnesium because that seemed too simple after decades of nothing working.
By the third and fourth period the pain was gone. Not reduced. Gone. No back pain. No thigh pain. No electric shocks. No pressure. No crawling to the bathroom. No punching myself to feel something different. I felt what I had always assumed normal was supposed to feel like, and then I kept feeling better beyond that.
I also switched to the Hello Disc when we moved to a house with a septic tank and I couldn’t use tampons anymore. I had avoided menstrual cups for years after seeing videos of people needing help removing them, hard pass on that experience. But the Hello Disc had a pull tab, had thousands of genuinely happy customers who weren’t being paid to say so, and I eventually took the leap. I stayed home my entire first period with it because I have trust issues. By the end of that period I was converted. Now I only change it morning and night. My sheets are safe. I could buy white ones if I wanted to. I’m only just now realizing that. 😄
You can find both the magnesium I use and more period and wellness products on my Supplements and Wellness page and my bathroom and personal care page.
What My Period Looks Like Now
The only symptom I have from my period now is the blood.
No cramps. No punching my thigh. No crawling. No crying. No stained clothes. No embarrassment. No planning my entire life around whether I’ll be able to find a bathroom. I don’t know where my heating pads are and I own three of them. I can leave the house during my period and not think twice about it.
I’m still annoyed that I have to bleed because honestly why, but if I can’t change that at least it’s not accompanied by brutal torture anymore. For as long as I’m still bleeding I will be taking the magnesium and using the disc. That’s not negotiable.
What I Wish the Medical Community Understood
Endometriosis is not a painful period. It is a disease that grows through the body, wraps around organs, disrupts fertility, affects every system it touches, and does not take a break between periods. It affects every patient differently because it grows in different places in different bodies, so no two patients are the same. Some people will start their first period and be immediately met with agony. Others, like me, won’t feel significant pain for years while the disease quietly progresses.
I also wish that the deaths caused by endometriosis were recorded as endometriosis deaths. Until they are we will never fully understand how many lives this disease takes.
And I wish someone had told me sooner that magnesium glycinate existed. Just try it. One pill in the morning and one at night. You don’t have to get your hopes up. You just have to try one more thing.
If You Are in the Worst of It Right Now
I know what it feels like to be alone in that pain at three in the morning with nothing that helps and no end in sight and no one who fully understands. I know what it feels like to stop hoping things will get better and start just hoping it ends.
Please try the magnesium. Please keep going. Please know that the version of you that exists on the other side of this pain, the one who forgets she even has endometriosis, the one who can leave the house any day of the month without fear, that version of you is real and she is waiting.
I used to think about everything this disease cost me. The pregnancies. The years of pain. The fertility. The moments I missed because I was bleeding through my clothes or crawling to the bathroom or laying alone in the dark waiting for it to be over.
I don’t think about it that way anymore.
Without all of it I wouldn’t be here. I wouldn’t have gone looking for answers. I wouldn’t have found them. I wouldn’t have built this space or written these words or had any reason to reach back and try to pull someone else through what I survived.
The pain brought me to the healing. The healing brought me to the purpose. And the purpose is this, every person who finds this page and tries one more thing and feels better for the first time is the reason all of it was worth surviving.
This is why I’m here. This is what I was always supposed to be doing.
And I am so grateful, even for the hard parts, because they made me exactly who I needed to be to help you.
🌿 — Ashley
Everything I use and trust for managing endometriosis and low tox living is at lowtoxliving.carrd.co
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