I have a chronic disease that makes many people nervous to talk about. It is NOT contagious, and it is very common. In fact 1 in 10 Women suffer from Endometriosis. Most don’t know they have it. I didn’t know I had it but lived with constant pain. It makes life miserable. It is a horrible disease with no cure. I have suffered my entire adult life – mostly misdiagnosed. According to the World Health Organization – updated March 31, 2021 (see page link below):
“Endometriosis is a disease characterized by the presence of tissue resembling endometrium (the lining of the uterus) outside the uterus (1). It causes a chronic inflammatory reaction that may result in the formation of scar tissue (adhesions, fibrosis) within the pelvis and other parts of the body. Several lesion types have been described:
- superficial endometriosis found mainly on the pelvic peritoneum
- cystic ovarian endometriosis (endometrioma) found in the ovaries
- deep endometriosis found in the recto-vaginal septum, bladder, and bowel
- in rare cases, endometriosis has also been found outside the pelvis
Symptoms associated with endometriosis vary, and include a combination of:
- painful periods
- chronic pelvic pain
- pain during and/or after sexual intercourse
- painful bowel movements
- painful urination
- fatigue
- depression or anxiety
- abdominal bloating and nausea
- and many more issues stemming from these.
In addition to the above, endometriosis can cause infertility.
Endometriosis has significant social, public health and economic implications. It can decrease quality of life due to severe pain, fatigue, depression, anxiety, and infertility. Some individuals with endometriosis experience debilitating endometriosis-associated pain that prevents them from going to work or school.
It cannot be diagnosed without surgery. Surgery can remove endometriosis lesions, adhesions, and scar tissue. However, success in reducing pain symptoms and increasing pregnancy rates are often dependent on the extent of disease. In addition, lesions may recur even after successful eradication, and pelvic floor muscle abnormalities can contribute to chronic pelvic pain.
Another wonderful resource is EndoFound.org by Dr. Tamer Seckin, Endometriosis specialist in NYC.
Those are the medical facts. Everyone’s experiences with this disease are different (there are stages 1-4 of this disease) but unfortunately after years of learning about it and talking to many others with it, most of the stated symptoms are common. I personally can add a few more medical issues onto the list due to being misdiagnosed and what was done for that. I was misdiagnosed for MANY many years and with MANY doctors. I had surgeries and procedures for the wrong issues. I will deal with this for the rest of my life.
Surgery can help but there are VERY few specialists in the USA (or even the world for that matter) and without a proper specialist doing surgery the chances of poor treatment are great. Most of us (if we are lucky enough to get it) will have many surgeries due to Endometriosis. It makes life a challenge and takes away many sufferers dreams (school, work, family, physical ability, etc.). My goals and dreams have changed since being diagnosed. I am no longer able to work on film sets for the very long hours required with my previous acting career, but I was lucky enough to be able to be a Mom and develop new loves with travel and in the fashion field. Never give up and always stay strong. Here is my story in some photos from my experience with Endometriosis. 💛
Pre-Surgery at the hospital – Robotic Lysis of Adhesions. One of many endometriosis related surgeries I have had. This one enabled me to get pregnant with my daughter so I’m forever grateful. 
One of the most common problems for women with Endometriosis is infertility. Due to my robotic lysis of adhesion surgery I was able to get pregnant and have my dream baby, my daughter. 💛 The color for Endometriosis awareness is Yellow and she wears it proudly before being a part of the 2017 San Francisco Worldwide Endo March. 
Endometriosis Awareness is critical for young women to get a timely diagnosis. Average diagnosis is 8-10 years (mine was 10+, many doctors, many surgeries and many misdiagnosis) and currently Endometriosis is only positively diagnosed via laproscopic surgery (although a non invasive test is being worked on now). 
Worldwide Endo March 2019, Crissy Field – Crissy Field – San Francisco, CA 
A bad endo flare day. One side effect of endo for me is hormonal Migraines and it is by far one of the worst parts. The blur in this photo is how I see the world when I feel like this. 
Worldwide Endo March 2017 – San Francisco City Hall – March 25, 2017 
San Francisco CIty Hall – World Wide Endo March, San Francisco CIty Hall – San Francisco, CA 
Marching for Endo Awareness in San Francisco with Camran Nezhat MD FACOG, FACS, President and Founder of Worldwide Endometriosis March and Worldwide Endometriosis Day San Francisco City Hall – March 25, 2017 
The Revelist article about Endometriosis 
This dog (Cherie) saved my life multiple times. Everyone said she was too small to be a service dog but she wasn’t. Due to issues with my Endo, I used to pass out semi frequently. This was extremely scary when I lived alone (before my husband) and when I was flying by myself. She revived me and alerted others when I wasn’t alright. It was scary to do anything but having her made it much less so. I wouldn’t be here without her care. 
1 day until surgery and the pain was intolerable 
Cherie keeping me comfortable with my heating pad before surgery. 
Post surgery gifts from my amazing family and friends (and no the chocolate isn’t for Cherie!). 
Pre-Surgery pain 
Cherie comforting me as usual 
Getting ready for the robotic lysis of adhesions that made it possible for me to have my daughter. 
Hospital time unfortunately is way too common with Endometriosis 
Post Surgery Bruising 2014 – 6 weeks recovery from surgery 
After surgery I had to wear this medical corset to regain my muscle strength. 6 weeks of recovery. 
The rainbow I saw after leaving the hospital after the surgery that changed my life. 
Endo awareness is the most important thing. 
Cherie passed away May 10th 2020 after 13 years of caring for me. She was my best friend, service dog, nurse and first child all rolled into one. I wouldn’t be here without her care. She truly saved my life
