I think transparency is important, especially if it helps open a dialogue. And just as I’ve been open in the past about my anxiety and depression, I feel it’s time to open up about my recent medical diagnosis.

I’m 26 years old, and have been dealing with “bad” periods since I was 13 (fun fact, I got my period on April 1st). I have PMDD, a more extreme case of PMS, and painful cramps that at times are debilitating, as well as cyclical digestive issues. After years of wondering what, if anything, was wrong with me, I finally received answers. I have Endometriosis.

Endometriosis, or “endo,” is a condition that is mostly surrounded by mystery and miss-information. The disease is commonly expressed as the lining of the uterus growing on the outside on the surrounding tissues and organs, but I’ve also read that the cell growths are a different entity altogether. Whatever the case, there is currently no cure, and little research behind why endo happens, and how to get rid of it. There are only invasive procedures and drugs that can sometimes offset the symptoms, but they don’t necessarily rid the body of the disease. There’s always a chance it can come back.

Don’t all women have bad period cramps?

The answer is: no.

The sad truth is that an estimated 1 out of 10 women has endometriosis (that’s approximately 176 million women!!!), and it can take up to 12 years to properly diagnose. This is partially due to limited research and, I think, partially due to women’s pain not being taken seriously. The symptoms of endometriosis differ from person to person, but the most common symptom is pain. Before my diagnosis, I questioned if I was overreacting and being a big baby. Don’t all women have bad period cramps? The answer is: no.

I’m so thankful to my current doctors who listened to me when I told them about my painful symptoms.  I finally feel validated and sane. And now I know why I’ve been in pain for so long.

In the past, I told different doctors about my cramps and other symptoms, but was told to take over-the-counter pain meds, and basically to just deal. I was young, and didn’t know better. I should have stood up for myself, but instead, I stopped bringing up my symptoms. Why even bother if I wasn’t being taken seriously? That experience had such a negative affect on me that even now, after a diagnosis and photographic evidence that I have this disease, I question that maybe there isn’t anything wrong with me.

While ultrasounds are sometimes used, the best way to diagnose endo is through a diagnostic laparoscopy. This is where the surgeon can look for endometriosis through incisions, and remove the cells if need-be. A laparoscopy can also be used for larger amounts of endometriosis removal. 

It’s exhausting to make it through some days with a smile on my face, but I try.

My endo was diagnosed via laparoscopy, and my doctor was able to take pictures and document what’s been affecting me for all of these years. I now have two scars: a thick, red line in my belly button, and a smaller, white triangle-shape below my belly. For the time being I’m okay with the scars, because I now have clarity of what is happening inside my body. And while I’ve yet to stop questioning the authenticity of my suffering, the scars are there to remind me that this is real. 

This disease is horrible and it is life altering. I have good days and I have bad days when it comes to the symptoms. On a good day I feel on top of the world. Other days—the majority—I feel hopeless and cynical and angry. I typically cry out of frustration and have spent many hours curled up with a heating pad. I don’t remember the last time I felt “normal,” and it’s hard not letting endo take over my life in every aspect. Chronic pain hits those affected by it both physically and mentally. It’s exhausting to make it through some days with a smile on my face, but I try.

Everyone experiences their symptoms differently, but to me, endo feels like:

• Lower-back aches
• Someone is squeezing my kidneys
• Someone is scraping my insides with a dull spoon
• Red, hot cramps
• Hot flashes
• A tense neck, shoulders, thighs, and hands
• A brick sitting and crushing my uterus and surrounding organs
• Random sharp jabs in my abdomen that catch my breath
• Exhaustion
• Anxiety
• Depression

And other times, it feels like nothing is wrong at all.

I’m not a doctor, and I’m certainly not an endometriosis specialist, but I at least can be my own advocate. And you can too. If you’re experiencing any kind of symptom that’s getting in the way of you living your life, please go see a doctor. If your doctor does nothing, or just tells you to take over-the-counter drugs, go find another doctor! It’s important that we speak up, because no one knows our own bodies better than we do.

If you’re part of the 1 in 10 who has endo, or want to learn more about the disease, here are some great resources:

• “Flutter” an endo symptom tracking app where you can track pain symptoms, periods, ovulation, moods, exercise, sleep, food, sex, and medication.
• Online support groups. Instagram has an amazing community full of support and information, just follow #endometriosis. You can also follow my own endo-inspired Instagram: @endos_not_my_friendo.
• Nancy’s Nook on Facebook is a goldmine of research and information, which I highly suggest taking a look at before choosing treatment options. 
• Podcasts: “In Sixteen Years of Endometriosis” is one of my favorite podcasts of all time because it’s funny, informative, and makes me feel like I’m not alone. It features Amy, a fellow endo sufferer, and her coworker and friend Brittany.
• Endometriosis.org has tons of information regarding global news, resources, treatments, support, and so much more.