The thing with chronic disease and illness is that it doesn’t discriminate. I’ve had symptoms of fibromyalgia and endometriosis for most of my life, but it took YEARS to diagnose.
Fortunately or unfortunately, some women do not need to wait until their mid-20’s or early 30’s to be diagnosed. Some are diagnosed in their teens and left with a lifetime of pain ahead of them.
Note to Parents and Warriors – it is important to know the early warning signs of diseases like Endometriosis; especially if you or a close family member (sister, mother, aunt) have been diagnosed through surgery.
Some early signs to recognize come from myself and other Endo Warriors. Please pay attention to your daughter and call her primary doctor with immediate concerns.
Four Abnormal Signs in Your Pre-Teen or Teenager
- Getting her first period super early or late in life. The average age for first menstruation is 12. Make a mental note if your daughter gets her first period between ages of 8-10 (early) or 14-15 (late).
- The “False Alarm”. I had been warned about this happening but didn’t realize the problem until after I was diagnosed. Some girls get something called a “false alarm”; basically they only bleed a little and then their period doesn’t start for months or years later. This happened to me and I was 12. My actual cycle didn’t start until I was 15.
- The first period OR others last too long and the bleeding is very heavy. (WARNING: I’m about to get graphic) Clots and chunks is totally NOT normal. Okay? My first cycle lasted 3 weeks and I actually thought that was the standard length. Can you imagine?
- Sudden or chronic cramping. As the experts say, cramps are normal. But cramps that bring you to your knees or cause you to stay in bed all day is not normal. If aspirin or Tylenol isn’t helping your daughter, please call her doctor!
Now I would like to introduce an Endo sister and my cousin. Since she is an adolescent, we will call her “Riz”. This girl has been through so much in her young life. Thankfully we have been there to support each other on difficult days. Endo Sisters truly have a bond like no other.
This is Riz’s story about being diagnosed and living with Endometriosis:
When I was 10, I got my first period. I don’t remember too much about it, but I remember they started getting more and more painful each time. Sometimes, I would get my period more than once in a month.
When I saw my doctor, she decided that birth control was the best option. It was really hard. I was the only 4th grader that had already gotten her period.
In 2012, I had to go to the emergency room for severe lower abdominal pain. After several tests and an ultrasound, we found out that I had ovarian cysts. Man, those were quite painful!
I’ve had the pain ever since then, but in December of 2014, the pain got worse. It started with pelvic pain going down into my legs causing severe pain. Another hospital visit and another question mark.
The next morning I woke up and couldn’t walk. My mom drove me to a different hospital. This time I had a CT scan done and it showed my appendix which usually is an indication of appendicitis. So I had a talk with a surgeon and we were planning on surgery the next morning, but the pain appeared to get better with time. My blood work did indicate that an infection was going on. As to where, we had no clue.
My family doctor referred me down to another city where they had better equipment. Yet again, we traveled 4 hours down to the hospital where I stayed for 1 day. I left once again without an answer. SO, frustrating!
Then in March 2015, I had to quit school and start homeschooling. I basically had no life. I saw a gynecologist who started saying it’s all in my head. My mom and I were getting pretty irritated because for months now I had been told that. With great frustration, mom told the doctor to at least do a surgery and see if anything was wrong. Reluctantly, the doctor agreed.
A few weeks later, I had my first surgery ever at the age of 16. The doctor went in and found so much endo that even she was shocked. After months, I finally had an answer!
But after recovering from surgery, I shockingly started having more pain than before surgery. The problem? This surgeon had performed ablation instead of excision. During my post-op, she said there’s nothing more that she could do. Can you believe that?
Yet again, we drove 4 hours to see an Endo Specialist. Within the first 5 minutes of the appointment, he said that he needs to go in and do surgery. I could not have been happier! Mom and I were both on the verge of tears with joy!! I have endo surgery #2 scheduled in a week; which cannot come fast enough!
Personally, being 17 and having this disease, is beyond difficult. It sucks. Being in pain everyday sucks. Being around people who don’t understand… sucks. Barely being able to get out of bed everyday sucks. Let’s be honest, Endo sucks!
I want to be the 17 year old girl that is in softball, tennis, skiing, and is a cheerleader that everyone knows. I want to be the girl that gets asked to prom by her crush. Not the 17 year old girl everyone knows only because she has a disease. Not the girl everyone feels pity for simply because she doesn’t have the stamina to do normal every day things.
Endo is seriously a horrible disease and I would not wish this on my worst enemy. I do get compliments on how strong I am for continuing to fight everyday and giving it my best.
I believe everything happens for a reason. My reason for getting Endo, especially so young, I have no clue. But something good must come out of it. It just has to!
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