March is Endometriosis Awareness Month!

Endometriosis (Endo) affects at least 6.3 million women and girls in the U.S. but didn’t start being diagnosed until the 1980s, which is why it is important to get the word out there on this disease.

On my journey to find bloggers I could connect with, I found many writing about their Endo but I also found an ongoing theme. They were usually married and trying to have children which is how they found out about their disease, but what I disliked most – their stories weren’t ones of encouragement but instead whiny pity parties and “poor me” attitudes yet the minute that they got pregnant, they abandoned their blogs.

My situation is a little different and for those of you who have been following for the past five years, you have only been given a glimpse inside. So if you want to hear my story, continue reading below but before we start, just so you have an idea of what I’m talking about, here is a detailed description from the Endometriosis Association

Endometriosis occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus — usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus; the area between the vagina and rectum; the outer surface of the uterus; and the lining of the pelvic cavity. Other sites for these endometrial growths may include the bladder, bowel, vagina, cervix, vulva, and in abdominal surgical scars. Less commonly they are found in the lung, arm, thigh, and other locations.

This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation — and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.

I guess you can say I am lucky. My mother was diagnosed with Endometriosis before I was born so I had someone close to me who had experienced it firsthand; the symptoms, the pain and the hormone changes that seemed to throw your entire body out of whack. My first period came at 11 years old but unlike my classmates, I couldn’t wear just a pad, mine was so heavy that I had to wear a tampon and pad just to get through the 1.5hr classes and would sit in fear through classes hoping for no accidents.

As the years passed the pain that came each month started to get worse and worse. My favorite item became a hot pad made from an old pair of sweats cut into shorts, filled with rice and sown shut. It fit my abdomen and the weight plus the heat was the perfect combination. I can still remember my first trip to the ER for the pain. I was 16, curled up into a ball lying on a bench made up of two chairs at work, waiting for my father to pick me up. When first arriving, the doctors believed that my ovary had become twisted but after multiple tests and ultrasounds, they found nothing and believed it was caused by my ovary releasing an egg. A tiny microscopic egg that caused me to go to the emergency room was just the beginning.

My diagnosis didn’t come until 4 years later when I was tired of the pain. The problem was there was no way to diagnose Endo without cutting you open. So a few months before my 21st birthday, I scheduled my laparoscopy with the hope of getting some answers. To break it down, they poke a hole through your belly button and another above your pelvic bone and inflate your abdominal cavity with gas. I still have photos from the surgery, when they made a third hole over my ovary, hanging on my refrigerator. It was nice to finally have an answer to what was causing all the trouble. They had found endometrium (tissue normally found on the inside wall of the uterus) on my right ovary and fallopian tubes. What soon followed was 9 months of the Lupron Depot shot (a controversial supplemental hormone) that caused me to go through menopause in order to break down the rest of the tissue living on the outside of my uterus.

I did another round of Lupron Depot about 7 years after the diagnosis when the pain got too intense. My doctor and I monitor my body and issues that arise. Like the time that I had my period for 6 months strait. Yes, you heard me correctly. Along with the normal issues, my Endo causes problems like hormone influxes. Besides using menopause as a way to control the tissue growth, I also take birth control pills continuously and use the sugar pills just a few times a year. So I went from having 4 periods a year to half a year of misery. There have also been two different cancer scares after age 25, as women with Endo are at an elevated risk of certain cancers but I will stop myself here before I start to get into the other no-so-pretty details.

But don’t think my life is always doom and gloom. My mother had two beautiful children and in the future, I will try and do the same. I have taken many precautionary measures to increase my chances of pregnancy (35% of Endo woman are infertile). Please don’t feel bad for me as there are women who have it worse. They were afraid to speak up and only when they try to have children find out that a hysterectomy is all they get. There is no cure for Endo, not even pregnancy or removal of all my reproductive organs will stop it as they still don’t know how it is caused. All I ask is that if you have experienced some of the symptoms please make sure to talk to your doctor, there is no need to suffer in silence; you are not alone.

Endo is simply a small hurdle that I must overcome every once and awhile. Know that I am not the disease – I am just a woman with Endometriosis who wanted to give you a brief inside look at my personal battle with my own body. I have Endometriosis, I live with my disease every day but it will never run my life.

Links to Endo:
Endometriosis Association
Endometriosis Research Center