What is Endo?

I thought about copying the description from any number of websites that have clinical descriptions of endometriosis.  Then I realized that you know how to use Google, so instead I’ll tell you what endo is to me, an endo girl.

Endometriosis is a disease effecting women that can cause any range of symptoms from excruciatingly painful periods to debilitating diarrhea.  The problem is it only affects women, specifically our lady parts, a taboo subject so no one talks about it.  This disease affects 10 to 20% of American women yet if you asked the average person they would have no idea what it was. 

Most common symptoms (* means I have this symptom)
·         Extremely painful periods *
·         Low energy *
·         Bowel issues that mimic irritable bowel syndrome
·         Heavy periods with clotting *
·         Spotting before your period *
·         Allergies/immune response *
·         Ovarian cysts *
·         Infertility *
·         Pain with sex
·         Pain with ovulation *
·         Pain that radiates down your legs like a numbing sensation *
·         More pain *

The average age of diagnosis is 27.  The problem is that most women have suffered for more than 10 years before they get a correct diagnosis.  I was lucky, my problems started at 14 and because of my family history I was treated early and my pain wasn’t waved off as whining.  Most women aren’t this lucky, they have such painful periods that they go see a doctor and are often told (especially by male GYNs or GPs) that this is just part of being a woman and they need to suck it up. 

To give you an understanding of how painful endo really is I’ll give you an idea of my pain threshold.  At 18 I passed a gall stone the size of a marble, I took an Advil and used a heating pad on my back.  The next day I went to the ER and had gall bladder surgery.  They liken the pain of passing a gall stone to that of giving birth.  I am in more pain several days per month than I was when I passed the stone.

Here are some things that have worked for me, specifically to reduce pain which is my main symptom.
  • Birth control pills (the ring didn’t work, just the pills)
  • Celebrex, a non-narcotic anti-inflammatory drug (the greatest medicine in the world and trust me I’ve tried them all)
  • When things are really bad / unbearable (i.e. rupturing ovarian cysts) a shot of Toradol
  • A Gluten Free Dairy Free diet
  • Laparoscopic surgery (only worked for me for about 3 months but I know others who had much longer periods of pain relief)

Endometriosis is a silent disease, so lets work on giving it a voice!  If you have a laparoscopic diagnosis of endometriosis please visit this website www.endtoendo.com and consider taking part in a genetic research study.  This study could lead to non invasive early discovery of endo and could mean huge progress in the endo research world.

If you haven’t been diagnosed but you think you have endo please do some research online and talk to your doctor.