Overcoming an Invisible Illness - Malori's Journey with Endometriosis: Part 1

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“We found endometriosis and removed it all.”

This is one of the first things I remembered hearing after waking up from my exploratory surgery on March 1, 2019.  (Paraphrased, of course, as I was still groggy from the anesthesia.) I had gone into this with apprehension and nervousness, not about the procedure itself, but about the outcome.  My greatest fear was being told that nothing was wrong with me. So at that moment I heard my doctor speak to me, the tide turned for our infertility journey.

March is Endometriosis Awareness Month, and I find it ironic that I was diagnosed on the first day of this month.  It gives me an opportunity to spread awareness about this mysterious disease that affects 10% of women, with probably more going undiagnosed.  

Endometriosis was not something that was on my radar until a few months ago. Being a registered nurse, I knew about endometriosis but I never considered myself as a “candidate” for having the disease until I started learning about it through the NaProTechnology lens.

What is endometriosis?

Endometriosis is a disease where tissue that is similar to the lining of the uterus (endometrium) grows outside the uterus.  By definition endometriosis cannot grow inside the uterus, but it can grow on the outside of it.

It can also grow on the ovaries, on and inside the Fallopian tubes, anywhere in the pelvic cavity, and has even been found on organs like the bowels, bladder, diaphragm, lungs, and in rare cases, the brain. However, the most common place endometriosis shows up is in the pelvic cavity.

One of the most “typical” symptoms of endo is painful periods.  This is because that when a woman with endo has her period, the endometriosis also sheds along with the lining of the uterus.  However, because the endo growths are not in the uterus, they don’t bleed out the vagina. They just bleed wherever they are present, essentially internal bleeding.  This can cause pain, sometimes so severe that a woman has to miss work or school for the first one or two days of her period or take pain medication. This is not normal!

But can you have endo without painful or heavy periods?

The short answer is: yes, but I don’t see it talked about very often.

Since I don’t normally have painful or heavy periods, it wasn’t a condition that I read about and thought, Wow that’s me.  In fact, I usually have light and painless (or nearly pain-free) periods!  I do know what painful and heavy menstruation is like, as I had it during my college years.  

However, at age 25 when I tried a gluten-free diet, an unintended side effect was having lighter and less painful periods.  I’m 32 now, and over the past 5-6 years my periods got progressively lighter, which concerned me and make me wonder if I had a fertility problem.  Turns out that my hunch was correct.

So while painful (and heavy) periods can indicate endometriosis, these symptoms are not necessary in order to have endo.  In fact, a friend who has it severely told me that endo is a “disease of stagnation” and light periods can actually be a symptom!  Her periods got heavier, but healthier, after surgery. Other pains can also be a sign of endometriosis, including pelvic pain outside one’s period, bowel or bladder pain, and pain with intercourse.

My main endo symptom

I began Creighton Model fertility charting in July 2018 because my husband and I needed answers on why I wasn’t getting pregnant.  At that point we had been trying to conceive for 11 cycles using the Sympto-Thermal and Marquette methods.

I actually found Holly on Instagram through searching the #Naprotechnology hashtag, and found that she worked with the NaPro Technology doctor that was 10 minutes from my parents’ house!  I began classes with her online, since we are living in Germany with the U.S. Army.

At first it felt like such an overwhelming task, and there was a point where I wanted to quit. But because Creighton integrates with NaPro and we knew that was our path, I stuck it out and I’m so glad I did. (Now I LOVE the Creighton method!)

A couple cycles later, I consulted with my NaProTechnology doctor long-distance.  He directed me to have a detailed panel of blood work done over the course of my cycle in September, which was mostly normal but we still tried progesterone injections to treat my prolonged PMS.  (They help a lot!) The next step was to get a series of ultrasounds done to see if I was ovulating. He also suggested a diagnostic laparoscopy to look for subtle endometriosis.

My main endometriosis symptom is infertility.  In the NaPro world, doctors are finding that 50% of women with endo do not have period pain, and the inability to conceive is their only symptom!  

It also is mind-boggling that a woman with mild endo could have problems getting pregnant, yet another woman with extensive endo could have no problems with fertility.  And two women with the same amount of endo could have totally different symptoms. These are just more mysterious aspects of this disease, and I’ve come to the conclusion that there is no such thing as “typical” endometriosis symptoms.

Stay tuned for Part 2 tomorrow!