I Have Endometriosis. Here Are the Excruciating Symptoms Doctors Dismissed for 10 Years
Mik Zazon
Mik Zazon, 28, dealt with over a decade of heavy periods, abdominal pain, bowel problems, and bladder issues that began in her adolescence. When she began sharing her medical issues on TikTok and Instagram, someone DM’d her about endometriosis, the condition she was eventually diagnosed with after an exploratory surgery. Here’s her story, as told to writer Reina Sultan.
Until about a year ago, I didn’t actually know that something was wrong with my period. When I had my first—which lasted for weeks—I remember being like, “Huh, is this normal?” I asked my mom, and she said, “Yeah, sometimes I have periods that long.” From there, I went through super-plus tampons rapidly—like, eight a day, sometimes even more. I just thought it was how it went; I didn't know any better. But I did notice that my friends didn’t have bleeding as intense as mine was. My periods got a lot shorter when I went on birth control in high school.
Ten years later, other issues cropped up. Sex was difficult—it was very painful, and I had miserable cramps and bladder discomfort that lasted for days after. But I did it anyway because I wanted so badly to like it, and because of everything I’d heard about sex growing up, I thought that discomfort was part of the deal for women. I explained other symptoms away too, like not being able to poop unless I had diarrhea, by reasoning that I probably had an issue like undiagnosed IBS. Complicating things further was that I also have polycystic ovary syndrome (PCOS), so I’ve had a lot of blood tests and painful transvaginal ultrasounds over the years. I never told the doctor how painful these penetrative ultrasounds were, because I didn’t know it was abnormal. I thought the pain was from the PCOS.
I also had what I thought were chronic UTIs—this happened more than six times a year. Whenever I had a flare, my legs and stomach swelled up really intensely, and I was peeing five, six, seven times an hour during the day and three or four times a night. I had blood in my pee, but when I went to the ER or urgent care about it, which I did a few times when it was really bad, I tested negative for a bladder infection. They gave me antibiotics each time, even though that didn’t stop the recurrence of my symptoms.
Eventually, I got so fed up with going to urgent care every month and a half that I just did online health visits. These calls were rinse and repeat: I told them my situation, and they gave me antibiotics. The last time I ever did one of those, the provider said, “You’ve been on antibiotics forever, and I’m confused that it’s not helping. You probably should go see a urologist for this issue. I don’t feel comfortable prescribing you them again.” I was like, “Well, great.” I remember thinking, “Why won’t you just treat my UTI?”
Soon after that appointment, I had a really bad flare. I couldn’t walk. I was beyond dizzy, and it was just so painful that I thought I was dying. I headed back to the ER, where a doctor said, “You might want to look into interstitial cystitis,” a chronic condition that causes bladder pain, pressure, and frequent urination. I was like, “I have literally never heard of that in my life.”
I was referred to a urologist, who dismissed me, then another urologist who, like the first, said I wasn’t old enough to have interstitial cystitis. I wasn’t convinced, so I went to one more doctor, who told me to make dietary changes like not eating acidic foods. They gave me an overactive bladder med and a different med to relieve irritation with urination, which helped to some extent.
It didn’t last for long, though. Soon after, I experienced the worst abdominal pain I’d ever felt. I remember thinking, “Is this a stomach ulcer?” I was trying to find an explanation as to why I couldn’t walk without feeling dizzy. I couldn’t go down one block with my dog without thinking I was going to have to call an ambulance. I told my boyfriend, Owen, “I think I’m going to die. I think I’m actually going to die, because what is this?” I was crawling to the bathroom. I was throwing up. It was so terrible. I wouldn’t wish that on anybody.
When I was 24, I started sharing my symptoms on social media. About a year ago, somebody sent me Bindi Irwin’s story about learning she had endometriosis after years of dismissal by health care providers. My jaw was on the floor. The dots started connecting. I messaged the person back who DM’d it to me, writing, “Do you have any more resources?” Within a couple of weeks, I had an appointment with my current ob-gyn.
At the intake appointment in March of last year, I spoke with a nurse practitioner. I brought in all of these charts, a period tracker, a calendar with my symptoms, and other documentation backing me up—I didn’t want to risk being dismissed yet another time. I was shaking when I first sat down, and I apologized for bringing in so much stuff. She was like, “I’m here to listen. I want you to tell me everything.” She just let me talk, and it was the first time I had ever been believed or taken seriously about my symptoms. She told me it seemed like I had endometriosis, a condition where tissue similar to the kind lining the uterus grows in other places inside your body, and she told me the different ways it’s treated. One of the options she recommended was laparoscopic excision surgery, where they go in and look for endometriosis, excising it wherever they find it.
This was the first time in 10 years that anybody had listened to me, and now I had the option to go through with a surgery that could possibly give me an answer about what the hell was really going on with my body. I remember thinking, “When all these tests in the past were negative, why should I take a chance on this?” But something in my gut told me I had to figure this out, so I scheduled the surgery. At the same time, a urologist would perform a hydrodistention, where your bladder is expanded with fluid to stretch it, to treat my bladder issues.
There were a few months between the initial appointment and the surgery, and I spent that time scared shitless. I kept telling Owen, “They’re literally not going to find anything. Should I back out?” But I went through with it in August of 2023. When I woke up from the procedures, I asked, “Did they find anything?” The nurse answered, “I think they did.” I was shocked. I remember slurring my words, like, “I'm not crazy. I'm not crazy.” She said, “No, honey. You’re not crazy.”
My doctor came in and went through all of the areas where they found a lot to indicate that I had endometriosis. There was evidence of a large cyst rupturing, which I connected to the excruciating pain I felt a couple months prior. My ovary was shaped differently because of how large the cyst had been. They found a ton of scar tissue, which was fusing different organs together—those are called “adhesions.” The bowel issues I thought were IBS turned out to be because part of my intestine was folded in half, meaning it wasn’t possible for poop that wasn’t liquid to squeeze through it. I was diagnosed with stage two endometriosis.
Immediately after surgery, my bladder pain was completely gone. My periods were horrible for the first five months of my recovery, but now I only get one once every couple of months. Things that were huge triggers for me don’t bother me at all anymore. I can eat certain things I couldn’t before surgery—I can eat candy! I can have a glass of wine without doubling over in pain. I can live more normally than before.
Looking back, I am so thankful that, after 11 years of symptoms, I didn’t give up on finding answers about my pain, as much as I wanted to sometimes. For anyone going through something similar: Listen to your body. If there’s something wrong, your body knows, and you know. It’s okay to ask for second or third opinions if something isn’t working. Because if I had listened to the doctors who didn’t help me, I wouldn’t have found any relief at all.
I hope people believe that whatever they’re going through is real and worthy of care—even when others dismiss them, and even in those uncertain moments when they’re possibly gaslighting themselves as a result. Keep records, and keep looking for the right help. You deserve it.
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Originally Appeared on SELF
