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My Long and Complicated Journey to an Endometriosis Diagnosis

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Warning: This is a post about periods. This post has major TMI going on. You’ve been warned.

Menstruation. Menses. Becoming a woman. It’s a rite of passage, the next step in a young girl’s life. When they talk to you about puberty when you’re young, they make it sound like some sort of magical journey. Like you’re leveling up in a video game and that’s your consolation prize. “Hooray, you’ve won the gift of creating life!” they exclaim, throwing tampons and maxi pads at you (insert eye roll here).

I grew up with two older sisters, so I wasn’t all that surprised or scared when I received my “gift.” And since the first time, it had always been a nightmare. (Notice I said “had”? We’ll touch on that later.) First, it started pretty normally, I guess you could say. Nothing to write home about. I was very irregular, but from what I was told, that wasn’t all that uncommon for younger girls.

Once I got into middle school, the bleeding had intensified and my irregularity was even more severe. I would have my period for months at a time with no end. I’d have to sit out of gym class because I was bleeding so heavily and my cramping was so painful. I missed school because I couldn’t even sit through one class period (ha, no pun intended… or maybe?) without bleeding through my pad or tampon and all over my clothes. It was horrific. I was in agony.

My mother and I would discuss with my doctor these issues, but like many others, we were told cramping and pain was “normal” and we didn’t need to worry about it. It was such a defeating feeling, being dismissed by your doctor. Even as a tween/teen, I felt doctors never really understood or cared to understand what was going on. That is severely messed up.

But then, irregularity swung towards the opposite end of the spectrum. I would go months without having a period. A sense of relief poured over, freedom. No more having to wash the sheets every night! No more sneezes of terror! That only lasted for so long before the switched flipped. More months of pain, bloating and intense bleeding. Waking up to seeing remnants of a serial killer’s murder evidence in your bed. Sorry, I may or may not be watching Dexter while I’m writing this.

I was finally prescribed birth control when I was about 14, but it never really made much of a difference. Over the next few years, I would still go months of continuously bleeding or months of having nothing at all. It was stressful and worrying, not knowing what was going on because no one I knew experienced anything similar. At the time, the doctor I was seeing was my pediatrician, and he never really wanted to discuss anything related to what was going on with my reproductive organs. I was always brushed off. Made to believe like I didn’t have anything to worry about and I needed to stop bugging them with my constant questions.

So, I did just that. I accepted it as a part of my life, no more questions asked. A few more years went by with the same routine until it became longer and longer time apart before my next period would come. Months, and soon I was up to a full year without a period. Being in my early twenties, that certainly wasn’t normal. I sought out a few different doctors before I finally received my first diagnosis: PCOS.

I started having excruciating pain regularly. After a few ER visits, I learned it was from cysts rupturing. Ouch. The regular pain became daily, constant, chronic. This was more than PCOS. I did some research and discovered endometriosis.

In a nutshell, endometriosis is a disease in which tissues that grow normally inside the uterus grow elsewhere. I picture it as if you stepped in a sticky pile of chewing gum, and it stretches and adheres to anything it can reach. It can cause incredibly painful periods as well as pain when you aren’t on your period. Crazy, painful belly bloating, bowel issues, urinary issues, digestive problems, painful sexual intercourse, you name it. They say the only place endometriosis has not been found is in the spleen.

Endometriosis is diagnosed through laparoscopic surgery — a small incision is made into the abdomen and a surgical camera is inserted to help the doctor see inside of you. However, endometriosis is tricky and you need to make sure your doctor knows what they are looking for. Unfortunately, my first gynecologist dismissed me so quickly when I considered having endo. He did appease me by performing a laparoscopic surgery, but he was so certain he wouldn’t find anything. It was no surprise to wake up from surgery being told everything was “normal.”

I didn’t feel normal. I felt ignored. So I said (internally) screw you! I’m going to find someone who cares! I searched for a new doctor, one who specialized in endometriosis and other gynecological issues. I managed to find one who actually seemed like they cared. He was concerned when I discussed my period growing up. Finally. Someone who knew it wasn’t normal! It was such a relief.

A few weeks later, I had my second surgery — another laparoscopy. This time, my new doctor did biopsies. This time, my new doctor found and removed endometriosis. Validation! Finally! I knew I wasn’t “crazy”! Although I knew that meant I had an incurable, chronic disease, I still felt relieved to know it wasn’t all in my head. My pain meant something.

I still have a long road ahead of me dealing with my endometriosis, but at least I know what I’m up against. For anyone who is struggling with your doctors, struggling to be heard… please don’t give up. Keep fighting. Be your own advocate. And for the doctors who don’t believe you, to heck with them. Honestly, my first doctor still refused to believe I had endo, even after being sent the pathology results. Talk about not wanting to admit he was wrong. Sorry I hurt your pride?

I’ve had four total surgeries relating to endometriosis since last year. Wowza. One of those including a total hysterectomy to ease my endo symptoms (as well as adenomyosis, which is endo on the uterus), which hasn’t seemed to help yet. I’m extra-special because I have Deep Infiltrating Endometriosis (or DIE — now isn’t that a nice acronym?) It grows so deep into my tissues it’s incredibly difficult to remove. Lucky me.

To wrap things up… a painful period is not a normal period. If your period interferes with your daily life and causes you that much suffering, please get yourself checked out. Endometriosis is incredibly common, but it is so hard to be diagnosed because not everyone knows what to look for. Do yourself a favor and find a specialist so you don’t have to have a wasted surgery like me.


Chronically Taylor

Getty image by Rudzhan Nagiev

Originally published: January 20, 2020
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