my fight for my endometriosis diagnosis


photo: toni digiacomo

I’ve been in pain for as long as I can remember. I got my period when I was 10, the day before the vacation Bible school pool party which led to an unfortunate first attempt at using a tampon, and ultimately ended with me sitting next to the pool in shorts and a pad as thick as a diaper while all my friends swam. If you want to know the fastest way to get rid of the “cool youth pastor” who wears Vans and bomber jackets 24/7, just tell him you got your period yesterday and watch him run for the hills.


About a year later in sixth grade is when the pain started. It started out milder in the beginning but ultimately resulted in my first trip to the gynecologist at 12, before most of my friends had even gotten their cycles. The doctor suggested I go on birth control pills, but the idea of her pre-teen daughter being on the pill horrified my mother, so we left empty handed and without answers. This would be the first in a long line of gynecologists I would eventually see. 


Honestly, the time between my first gynecologist visit and my 17th birthday is kind of a blur. Aside from a twice yearly ER visit for severe pain, my mom eventually giving in on the pill due to sheer desperation, lots of referrals from gynos to gastros and gastros to gynos with them each insisting it was a problem for the other doctor and so many absences and tardies that my parents almost got turned in by my high school for truancy. 


The day-to-day in high school is what I remember the most. I missed my first period class constantly while I was stuck in bed with my heating pad praying that the insane amount of ibuprofen I had just taken kicks in fast. This is when I started to get the reputations that stick with me to this day: “flakey,” “unreliable,” “moody.” At 16 without any real diagnosis, how was I supposed to explain to my crush why I seemed so quiet and distant in biology that day? What excuse could I give my male tennis coach as to why I can’t stay for practice? How was I supposed to tell my friends that I couldn’t go to the football game with them 10 minutes before I was supposed to pick them up even though I wanted to go more than anything, but I could barely make it to the bathroom without passing out from the pain? I found out very quickly that you can only use the excuse that you passed out or threw up from pain so many times before people stop believing you. But I don’t blame them, some days I didn’t even believe myself.

photo: toni digiacomo

Two doctors told me they believed that the pain is psychosomatic and that it was a result of anxiety or a cry for attention — can’t see them saying that to a man can you? Four doctors told me it was “normal period pain.” When I told them about the throwing up, passing out and missing school, they told me that some people are just tougher than others and I must be on the sensitive side. But by far the worst doctor appointment I ever had happened on my 17th birthday.


I don’t know why my mom decided that on my birthday was the best day for a trip to the gynecologist, but she did and I got to go out to lunch and miss my afternoon classes, so I wasn’t really complaining. After years of frustration, lots of round and round with specialists, and talking to family friends, I did what every doctor in the 21st century dreads the most: cracked open handy dandy WebMD and diagnosed myself with endometriosis. I checked almost every box as far as symptoms go and was so excited to finally be validated as opposed to being gaslit like what had happened to me previously and unfortunately many other women in the medical system. I saw having a diagnosis as a way to claim back the power from my pain. I would have a legitimate excuse rather than people just thinking I was crazy, a baby, flakey or unreliable. Unfortunately, the well-liked “endometriosis expert” that I saw that day strongly disagreed with my self-diagnosis telling me, “it’s impossible that you have endometriosis; no one under 25 can possibly have that.” She told me that it was “normal menstrual discomfort” and I’d just have to get used to it. 


That appointment broke me. I rode home sobbing at the idea of dealing with the pain for the rest of my life, that idea was unbearable. Luckily, I didn’t give up and found a real endometriosis expert at a competing hospital. Unfortunately, the only way to definitively diagnose endometriosis is through laparoscopic surgery, so there’s always a chance that you’ll end up having pretty major surgery and still wake up with no answers. I luckily found a surgeon who saw my desperation and agreed to take the risk with me. 


I had surgery in November of 2017 and they found six different places with endometriosis. It was almost exactly five years since my first gynecologist appointment I went to when I was 12. Believe it or not, I was one of the lucky ones because endometriosis takes on average a minimum of seven years to diagnose. If I didn’t advocate for myself, I may have never gotten answers.


Unfortunately, there is no “cure” for endometriosis. Surgery with post-op birth control can make you feel better for a time, but the pain and the endometriosis almost always comes back. In my case, I felt better for about two years then last spring I started getting really intense pain on the right side of my stomach, which ending up being a cyst around three times the size of my right ovary, a side effect of the IUD that was placed to try to keep the endometriosis from growing back as quickly. After that shrunk thanks to additional medication, the endometriosis came back with a vengeance, sending me to the ER twice in one month and causing me to miss two full weeks of classes.

photo: toni digiacomo

An MRI last month confirmed that the endometriosis is back and I have an appointment with my surgeon to schedule an operation later this week.


I didn’t choose to write about my experience to get sympathy, but to hopefully give hope to someone going through something similar. I know that I read lots of articles about people’s experiences with endometriosis when I was trying to get my diagnosis, so I hope that my experience can help someone out there who is in the same boat that I was in not that long ago.


Second of all, I want to spread awareness that period pain is not normal. Menstruation should not halt every aspect of your life and if that is your experience, you may want to consult your physician. Unfortunately as I’ve mentioned, as women we have to advocate for ourselves way more than we should, so just remember to trust your instincts because you know your body better than any doctor ever could.


Finally, if you have a friend who is “flakey” or “unreliable,” please be patient with them. You never know what’s going on with someone mentally or physically and if you show that you understand and you care, they will appreciate it more than you could ever know.


Linked below are some reliable sources for more information and similar stories that may help.

Endometriosis Foundation of America

Mayo Clinic

Johns Hopkins

A woman’s 7-year battle to get endometriosis diagnosis

They Said It Was Bipolar II. Now I Know It Was Endometriosis


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