The Reality of Endometriosis

Endometriosis is a medical condition. It’s a disorder that causes tissue which normally grows inside the uterus to grow outside the uterus; most commonly endometriosis causes the tissue to grow on the ovaries, Fallopian tubes, and intestines. While there are hormone therapies and surgeries available for treatment, there is no cure. Treatment can also be little to no effective.

Someone who has endometriosis is either born with it, will naturally develop it at some point in life, or develops it after another non preventable medical risk factor. Either way it is not a one size fits all kind of thing. Some women experience symptoms as early as childhood while others don’t until their thirties or later. Symptoms also vary from person to person. One person may have one symptom while another has over ten. Symptoms can be during periods/menstruation, during random flare ups, and/or 24/7 with especially worse flare ups. The most common symptoms are abdominal pain, back pain, pelvis pain, rectum pain, vaginal pain, pain during sex, painful urination, pain while going number two, abnormal periods/menstruation, heavy periods/menstruation, spotting, constipation, diarrhea, nausea, bloating, cramping, and infertility. The severity of each symptom also varies from person to person.

There are four stages of endometriosis. Women can shift stages and there is no specific growth/progression rate. In stage one, implanted endometrial tissue is not heavily present. However, keep in mind stages do not directly correlate with pain levels and symptoms; a stage one person may experience similar or exact pain of a stage four person. (Note: in case someone is not medically educated, the word "implanted" in "implanted endometrial tissue" doesn't mean someone put it there, it's just the name of the tissue of endometriosis.) In stage two there are more implants than stage one. In stage three there's not only more implants, but it is also possible to have endometrial cysts on one or more ovary. In stage four there are many implants and the cysts on the ovaries are large.

There are also four categories of endometriosis, which do not have to be the same number as the stage. While stages count implants and cysts, categories detail location and its affects. In category one, peritoneal endometriosis, the endometriosis is on the peritoneum (a membrane lining the abdomen). In category two, ovarian endometriosis, there are cysts in the ovaries which can burst and spread endometriosis to other organs. Category three, deep infiltrating endometriosis 1, has implanted in organs such as ovaries, rectum, and outside the uterus, which may prevent these organs from functioning properly. Category four, deep infiltrating endometriosis 2, is when the endometriosis has spread to further organs outside of the pelvic region such as the heart, lung, and brain.

The worst part of endometriosis is the medical field all too often doesn't take women seriously. Four out of five (80%) of women with endometriosis are not diagnosed because of health care providers that don't take the details their patient's give them seriously. It often takes a woman multiple doctors and several years (50% of women say it took up to 6 years to be diagnosed) to get a proper diagnosis. One in five (20%) of women saw up to five different doctors before being diagnosed. One in ten (10%) of women who are diagnosed later on say they were told "It's all in your head" by a doctor. One in three (33%) of women who are later diagnosed say they were told "It's part of being a woman" by a doctor.

Pain is the most common symptom of endometriosis and is usually the most severe symptom. The pain felt varies from one woman to another but can range from mild cramping to excruciating agony. It is not uncommon to hear of women with endometriosis collapsing to the floor, shaking, screaming and vomiting from the pain. Unfortunately in some cases where women are ignored or treatments fail, women have taken their lives in order to end the pain.

So what can you do about all of this? Everyone can stand up for women's right and equality in the medical field and share information to raise awareness. If you have a friend or family member with endometriosis, be kind and understanding. Ask them what you can do to help depending on their symptoms, accompany them to doctor appointments and insist proper care by the medical professionals. In the event someone with endometriosis has a flare up around you, ask if they prefer a bathroom or to lay down. If they need help in the bathroom, quickly find someone able to do so. If they don't need a bathroom it is best to get them a soft place to lay down (ex: bed, sofa/couch, recliner, blankets, etc.) and preferably a quite place. Talking may be difficult due to the high level of pain so only ask necessary questions. Bring them a bag or bucket to vomit in, a heating pad, Tylenol/ibuprofen as well as all prescription medications, water, and Gatorade and/or ginger tea to help the nausea. If they need/want these things they will take it from you, and if they don't then they won't. It is a million times easier though for you to grab everything and anything than it is for them to think or talk. The woman may also cry and scream from pain, please be patient, remain calm, and comfort her. The pain can truly be excruciating so her screams are not an exaggeration. If she asks for a hospital, call 911 and get an ambulance so she'll be seen immediately. Inform the EMT's that she has endometriosis and that it's possible a cyst may have burst. This will help them understand the true severity and maximize their ability to help. The doctors will also need to know this information and the only way they may be able to know is if the EMT's are first told so they can relay the information in the event the woman can't talk. A rupturing cyst depending on location and size can be potentially life threatening.

I hope this has helped shine some light for those who didn't understand endometriosis. Together, we can raise awareness and improve the lives of thousands of women world wide.

Sources:

health.com, mayoclinic.org, and healthline.com Links provided below.