According to the Endometriosis Foundation of American, about 175 million women worldwide are affected by endometriosis. An estimated one out of 10 women in the United States are affected by this disease. Endometriosis occurs when the tissue that lines the uterus is found in the outside regions of the uterus (so where the tissue should not be). Most of the time it is misdiagnosed and mistreated.
There is a myth that endometriosis starts in women during their 20s but it can occur in girls when they first experience their period. This disease mostly affects women in their reproductive years, between the ages twenty-five to thirty-five but it can also affect girls in their youth as young as eleven.
Different symptoms of endometriosis are killer cramps, long periods, heavy menstrual flow, bowel and urinary disorders, nausea and/or vomiting, infertility, chronic fatigue and many others. Another myth is that pregnancy can cure endometriosis, but the actual truth is that there is no cure for this disease, pregnancy causes a reduction of the symptoms due to the increase of progesterone in the body.
While there is no cure for this disease, there are different things that can help reduce the symptoms. One way is a deep-excision, which is when the surgeon carefully excises or removes the entire lesion from wherever it is found during a laparoscopic excision surgery.
This includes the tissue beneath the surface. Another way is a cold-excision, which is when a surgeon uses a laser to try destroy and burn the disease off. Another way is other different forms of surgery that a doctor suggests. A myth is that a hysterectomy will cure endometriosis but actually since they only removed the uterus and not the lining, the patients will continue to show the symptoms.
There is a freshman at Lincoln High School that has endometriosis. Her name is Sarah Votta. Her journey with endometriosis began four years ago. When she was ten, she had gotten her first period and by the time she was eleven, she knew something was wrong.
Every month she would miss at least three days of school due to cramps and the pain she was in. She would go and see her pediatrician every month and they would always tell her to take Advil and Tylenol, but it never seemed to help. Once she was twelve, she was finally old enough to go see a pediatric gynecologist and that is when she first started the pill, but that only helped for a few months. She once had ended up in the emergency room and the doctors thought it was her appendix, but it was just her cramps. After running many tests, they still had no explanation for the pain, and she was lucky enough to not have her appendix taken out.
After being discharged from the hospital, her mom called the doctors to set up an appointment right away. When she got into the appointment the doctors completely brushed her off and told her that there was no way she was in that much pain. Leaving the appointment, she started bawling her eyes out thinking she was crazy. By the time she was thirteen, she was able to see her mom's gynecologist. Within fifteen minutes of the appointment, the doctor could already tell she had extreme signs of endometriosis. After doing some research, Sarah and her mom found the endometriosis center at Boston Children’s Hospital. During an appointment at Boston, the doctor explained that the only way to really diagnose her was through surgery. A surgery was scheduled for April of 2017. During this surgery, they found she had stage two endometriosis.
Part of Sarah’s treatments include taking a hormone birth control pill every day and skipping the week of the placebos at the bottom so she never gets her menstrual period. By taking this pill and making sure she does not get her period, it stops the endometriosis from growing where it should not be.
Along with pain killers and hormone birth control pills, she also takes anxiety medicines. Having a chronic illness and all of the doctors' appointments and other matters that interfere with her daily life can cause her anxiety to heighten.
Living with endometriosis is something Sarah will have to deal with for the rest of her life. She says that it is something that affects her emotionally, mentally and physically. Some days are good, but then some days are bad. Sarah, however, always has to stay positive. She’s not always able to go to school or see her friends because of her pain. Some days the pain is so bad that she can't even walk to the bathroom or open her pill bottles since she is so weak. Her heating pad and her Livia, which is a portable tens unit, has probably become her best friend. One thing that is very difficult for her to deal with is that fact that people either do not care why she can’t go out or not really understanding what’s going on with her.
One of the worst things that happened to her before she was diagnosed was having people think that all her pain was in her head or she’s crazy. Her worst experience was people not asking her to do things just because they assumed she wasn’t feeling up to it.
Sarah’s days normally start at 6:30 when she gets woken up to take her medicine and eat some breakfast, and that is how she accesses how she feels, where her pain is and if she can come to school or not. On her worst days, her mom has to open her pills bottles since she is so weak and bring breakfast down to her because she is in so much pain. If she goes to school, she will leave around 10:00. She’ll go home and take a nap after just three hours of school since she is so exhausted but will wake up around 12:00 for lunch. In the afternoon, she’ll do whatever work she can to try and keep her grades up.
During the afternoon, she goes off to physical therapy and sometimes she’ll even have more than one doctor’s appointments. After doctors' appointments and physical therapy, she’ll come home and watch some TV or listen to music because everyone needs a little down time. Once her mom comes home from work, they’ll eat dinner together. Sometimes Sarah will have her tutor over to help make up some work or they’ll call her sister who is in college in North Carolina. After that, she spends some time with her mom but also does some more homework. Most nights, she’ll try and do yoga, since she does not get much physical activity, and it helps to relieve her symptoms. After yoga, she’ll take a shower, take her nightly medications and then go to bed.
All of the pain she has differs from day to day along with hour to hour. Her pain is normally in her lower pelvis and is a dull stabbing pain. On a scale from one to ten, Sarah can go from a four or a five to a nine within twenty minutes. Her pain levels all depend on her mood, her environment and what she’s eating. For Sarah herself, her pain is mostly caused by stress and her emotions. Doing something stressful and nerve racking will instantly intensify her symptoms.
In addition to having crippling pain she also experiences gastrointestinal symptoms. Sarah on a trial medication called Linzess that is currently not FDA approved for under 18. She is also part of the woman’s health study at Boston Children’s Hospital called “Adolescence to Adulthood” where a wide range of girls of different ages with endo, are studied closely.
During Sarah’s surgery she donated all endometrial cells that were taken out. She also donates blood, urine, and saliva every three months. She says she loves being part of these studies, because if donating blood or anything else can help someone come up with a cure, it is worth it. No one should have to suffer through this terrible disease.
Sarah said, “The endo community is so large that I actually have endo sisters all around the world. We keep in touch, follow each other on social media and go to each other for advice. Even though I have lost a lot of friends in my battle, I have become extremely close to my family in the process... I love being an endo warrior and sharing my story. I am 100 percent open about my battle and hope to educate as many people I can in the process.”