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
- 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. 💛