5 Things I’ve Learned: Endo Edition

I’ve had pelvic and lower abdominal pain since I was 14, along with intense life-altering cramps. Like most, I wasn’t diagnosed for over a decade.

In those years, I researched all things endometriosis even though I was told my pain couldn’t be that. Through those years and the eight-ish years I’ve been diagnosed, I’ve learned some very important things. Things that helped me tremendously once I was diagnosed.

I wanted to share some things I’ve learned in case someone else might not know.

Five facts I’ve learned about endometriosis

Endo isn’t preventable

As much as I hate it, there is nothing any of us can do to prevent us from getting endometriosis. Several good treatment options can help treat the disease and its symptoms.

But there has yet to be a cure found. Treatment can include drug therapy, surgery, or alternative (homeopathic) methods.

Endo can be other places than just the female reproductive organs

I was SHOCKED to discover that endometriosis could be found outside the reproductive organs. I assumed that since it is a disorder where tissue similar to endometrial tissue grows outside the uterus, it would only impact the reproductive organs.

I had no idea it could be found on the bladder, the rectum, and the bowels. In rare cases, it can even be found in the lungs and diaphragm.

Teenagers can be diagnosed

Teenagers are known for having awful cramps during their periods. But there is a difference between “normal” cramps and the extreme cramps and pain that can be felt with Endometriosis.

If you have cramps so bad you have to stay in bed for days or that make you vomit, it’s time to get checked. Especially if you also have heavy bleeding every month. If you feel like something is wrong, please seek care, or talk to your parents about getting care.

Pain isn’t an indication of the severity

When I had my first surgery, I learned that extreme pain doesn’t actually mean you have severe disease. During my first surgery, my OB told me I had endometriosis but that she didn’t find much of the disease.

She told me then that you can have the smallest disease with extreme pain. Or even severe disease with little pain.

Basically, the severity of the pain has no correlation to the severity of endometriosis. I’ve since had two more surgeries where she found much more disease, but the amount of pain hasn’t changed over the years.

Sex is not always and shouldn’t be painful

Since I first started having sex in my late teens, I assumed it was normal for sex to be painful. But finally, in my mid-twenties (yup, I’ve had painful sex all those years) when I finally asked my OB to do something for the severe pain I had every month.

At that appt, she asked a bunch of questions, one being if sex was painful. I said, “Why, isn’t it always? It’s normal to have pain, right?!” To which she replied that it wasn’t normal and that sex should not hurt every single time.  It was after that appt that my first laparoscopic surgery was scheduled.

Is there anything that you would add to this list? Please share in the comments!