Symptoms: My Introduction to Endometriosis

During a short break that morning, I was laughing with my friends at school (at whatever 11-year-olds laugh about). All of a sudden, my stomach started to feel funny. I felt dizzy and hot. A moment later it passed. So, being 11 years of age, I ignored it.

Some time later, while the teacher continued the lesson, this “not so well” feeling came back. Except now I was also shivering with chills. One moment I was freezing, and then hot flashes the next. I tried to play it off so that my classmates wouldn’t notice. But the symptoms worsened.   I felt this shooting, stabbing pain in my gut that radiated through my lower back and down to my knees. Waves of intense nausea rolled over and under me, challenging my balance ability to think straight.

Unable to hide my discomfort any longer, I raised my hand and asked to be excused to the restroom. Dazed, confused and gripping the wall, I stumbled down the hallway, which seemed to go on for miles and into the nearest restroom. My lower abdomen thrived with cramps and electric shocks of stabbing pain. I sat on the toilet trying to disguise my moans of agony as other girls walked in and out of the bathroom. But, little did I know, the worse hadn’t even begun yet. Bouts of debilitating diarrhea and vomiting made me wonder if this was what death felt like… (In time, I would affectionately come to call this “The Purge Phase”). Weak from the trauma, I eventually sank to the floor in the stall. Hardly able to move, speak or think about anything other than the pain.

Someone must have seen me laid out on the floor or realized that I was gone from my classroom for a long time because after what seemed like an hour, I heard a soft knock at the stall door. I don’t recall who it was, but I was helped into the nurse’s office where I collapsed onto a cot. I stayed there through lunch and recess until my dad came to pick me up from school. Every single bump in the road caused jarring pain. I thought I would pass out as the symptoms persisted. Somehow, my dad managed to keep me from ruining his dashboard during the car ride. Although I would spend the next day bedridden, I would be in too much pain to sleep.

This was my first period. And my introduction to Endometriosis. This all may be a bit TMI…but it’s the ugly, hard TRUTH. As my symptoms escalated over the next several years, I would become well acquainted with restaurant, airport, and hospital floors. This alone speaks to the level of helplessness I experienced because anyone who knows me well can tell you that I’m a bit of a germaphobe. No matter where I was or how much I tried to invoke the mantra “Mind Over Body,” my wildly unpredictable periods would stop me dead in my tracks. Pain reliever pills wouldn’t even touch it. The nurse at every middle school, high school, and college I attended knew me well. Too ashamed to admit to my friends, family, teachers, co-workers, etc. the real reason I was missing another social gathering, church service, concert, class or day of work, I would simply say I was just sick – all the time…  

The first time I heard the word Endometriosis was from an OBGYN. She said that my symptoms were consistent with this disease, but she seriously doubted that I had it because most women don’t get it until after they are in their twenties or after having a baby. Medical science has since proven that a girl can have it at the onset of her very first menstruation.

Although shooting stabbing pain is a common characteristic of Endometriosis, there are so many other symptoms associated with this debilitating condition. This wandering tissue can cause a number of symptoms. The list below is a range of possible symptoms categorized by the major body system it affects.

I also felt it important to include this exhaustive list because Endometriosis affects women in soooo many different ways. For example, I remember asking my doctor if a certain symptom I was experiencing was connected to Endometriosis. He didn’t seem to think so. But, after doing some digging, I discovered that it actually was! Personally, I’ve experienced at least 80% of the symptoms listed below.


DIGESTIVE SYSTEM

  • Abdominal/intestinal pain
  • Lower back pain
  • Sharp Pelvic pain
  • Painful bowel movements
  • Nausea, Vomiting
  • Diarrhea, Constipation
  • Bloating (aka Endo Belly)
  • Rectal bleeding during periods
  • Painful digestion
  • Digestive problems

URINARY SYSTEM

  • Painful urination
  • Iron anemia
  • Bloody urination (especially during menstruation)

REPRODUCTIVE SYSTEM

  • Infertility
  • Passing large clots/tissue during period
  • Bleeding between periods
  • Extremely painful menstrual cramps
  • Hot/cold sweats
  • Pain during/after sexual intercourse
  • Excessive bleeding
  • Irregular or heavy menstrual cycle
  • Ovarian cysts
  • Adhesions –tissue fuses the pelvic organs together
  • Painful ovulation
  • Scar tissue formation

NERVOUS SYSTEM

  • Dizziness
  • Fever
  • Sciatic nerve pain
  • Depression
  • PMS
  • Pain, numbness, and/or  tingling sensation in the legs, hips, buttock, knees, or feet

CIRCULATORY SYSTEM

  • Pelvic Congestion Syndrome
  • Chronic fatigue
  • Iron deficiency

RESPIRATORY SYSTEM

  • Shortness of Breath

IMMUNE SYSTEM

  • Lower immunity to fight off colds, allergies, food sensitivities, skin sensitivities, and bladder infections

 

Keep in mind, the systems of the body intertwine, connect and impact each other. This is why Endometriosis has the potential to affect so many aspects of the human body & why it’s important to take a whole body approach when seeking a remedy for this disease.

This is my story. But many women experience Endometriosis in different ways, making it easy to misdiagnose. Depending on where the endometrium spreads, women can have many, few or no symptoms. I have a friend who rarely had pain during her cycle, but just happened to be diagnosed with Endometriosis during a surgical procedure for a completely unrelated health issue. This also highlights the fact that Endometriosis is known to occur with other chronic diseases. Other women only become aware that they have it because they are unable to get pregnant, as Endometriosis is one of the leading causes of infertility.

How has Endometriosis impacted you or your family member? I would love to hear your story! If you feel comfortable, you can share in the comment section below. I look forward to engaging with you. Endometriosis (and any sickness for that matter) is very difficult. It’s even harder when you try to do it by yourself.  

You are not alone.

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  1. I just want to thank you for telling your story. I’ve known a few women with many these symptoms and it’s really hard to ‘put together’ for someone not experiencing it. This gives a lot of context and knowledge and stuff.

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