My Endometriosis Story

I would like to share this story with the world in hopes of finding someone with answers or some support. About 3 years ago I started experiencing some pelvic pain in my uterus and naval area. I was also getting very weak and sick. I went to visit an OBGYN and they told me I just had painful periods. But my pain wasn’t from periods. I then persisted that I get an ultrasound because I had been doing some research on my symptoms. When they gave me an ultrasound they found a very large cyst on my right ovary and said it was very complicated. The doctor proceeded to prescribe me to a birth control and told me I may have endometriosis but the only way to tell for sure would be to have exploratory surgery. Endometriosis is when the tissues that line the uterine walls,and shed and bleed every month, grow outside the uterus and throughout the body. The tissues can cause adhesions, inflammation and blood filled cysts. About a year went by with taking the BC and I really saw no changes. I changed my BC and tried again. After a while I was seeing no positive changes and I was gaining serious weight around my abdomin. I stopped taking the birth control and went back to the doctor. He recommended I take a smaller dose. After this I was getting very frustrated because he wouldn’t do the exploratory surgery I really needed. I agreed to take the lower dose and actually saw myself getting worse. Three years have passed and I still have not gotten surgery or any improvement. I started getting “attacks” of pain where I would be in extreme pain for days at a time and could not leave the bed. No amount of medication helped. No muscle relaxers, opioids, or heat packs could relieve me enough to even relax or sleep. After having an attack that lasted almost 2 weeks I went to the emergency room. They gave me an ultrasound again and said I need to see an OBGYN. Right back where I started. They gave me pain pills which I got dependent on and went through withdrawals when I ran out. I’ve quit school, lost my jobs, lost my social life, and people I cared about. The depression from the endometriosis consumes me daily. Even when I feel a little relief, I know it will be back in a few hours. I believe the disease has spread to my bladder, intestines, and rectum and possibly my lungs. I’m tired and ready to get through this. I’m only 20 years old and I can’t even take a walk without feeling sick. I hope soon doctors will realize that this disease can be very serious and debilitating. 

Here’s some fun facts about this lovely disease:

  • About 200,000 US cases per year
  • The disease is chronic and lasts a lifetime
  • 40% of women with endo are infertile. The rest may become infertile if left untreated
  • 50% of infertility cases are caused by endo 
  • It can spread through the whole pelvic cavity, lungs, skin, eyes, and brain
  • There is no known cure
  • After surgery is given, it may come back within the year 
  • There are higher risks of developing ovarian cancer 
  • On average it takes 10 years to get an accurate diagnosis and treatment of this disease

I hope I can shine some light on the severity of this disease and maybe find some support. Until then I’m going to keep fighting for my life back.