By Shelby Stewart
Since she was 14, Missy Anderson has been suffering with endometriosis.
“My very first cycle, my mom had to take me to the ER because it was so bad,” said Anderson, a Brandon Township resident. “I wasn’t truly diagnosed until I was 20.”
For 22 years, Anderson would research the disease, and would find that it is an endometrial like tissue, similar to the lining of the uterus, on the outside of the uterus. From there it can spread to other organs and parts of the body.
March is endometrisis awareness month, and women like Anderson are speaking out to raise awareness of the incurable disease.
“When I was 18, I suffered from my first ovarian cyst, and had to have surgery on it,” she said. “Two years after that I had my first diagnostic surgery. At that time, the doctor that I had told me once I have a kid, it’ll go away and be better.”
Anderson would hear this for years, a time which she spent researching the disease that she was unfamiliar with. When she was 25, she started seeing a different doctor and had to fight him to go in and remove the endometriosis from her body.
“I told him I wasn’t leaving until he went in and cleaned it out,” she said. “I had gone to the emergency room because I was in so much pain.”
He had told her if she had a baby, it would get better, but she had been trying for years to get pregnant with no success.
Anderson had the surgery to remove the tissue from her body, and would go on to have many more surgeries to remove the disease, not only from her uterus, but other organs as well.
For a time after that first surgery, Anderson and her husband moved around, and she tried many different doctors. Many would push her to take hormone based medications, ones that she described as having very serious and lifelong side effects.
“I fought against taking these drugs,” she said. “I had done my research, and my body was already going through enough.”
Anderson was up to three surgeries, and her doctor at the time told her that her best time to get pregnant would be six months after the surgery.
“I got pregnant a month later,” she said. “Because I had had that surgery and it cleaned it out and we timed it right.”
Anderson had thought that maybe her past doctors would be right and that it would get better now that she was having a baby, but that was not the case.
“It got much worse for me,” she said. “After my son’s first birthday, after he weaned off of breastfeeding, I ended up in the hospital again because of endo. A lot of people think it goes away when you’re pregnant, but it just doesn’t spread.”
Anderson has had to have a surgery every year to keep the painful symptoms at bay, because six months after removing the disease from her body, the symptoms would come back.
“My doctor was the best thing that could have happened to me,” she said. “In 2016, she was working with me to get me to a center in Atlanta, a Center for Endometriosis Care, they specialize in this,” she said. The disease had been found so deep in her tissue that it was everywhere inside of her, and she needed a deeper removal surgery. “We started the process, and somehow I ended up pregnant. We had been trying for three and a half years, had been on fertility medication and everything.”
The pregnancy was very hard for Anderson, and she was hospitalized at 22 weeks for early labor. She was on medication from then on to keep labor at bay, and gave birth to her second child three weeks early.
“It was a miracle I made it that long,” she said. “The pains were worse than they had ever been. I was balled up on the floor, I couldn’t even play with my kids, I was in so much pain.”
Anderson met again with her doctor, who asked if she was done having kids.
“We’re grateful, we’re blessed to have the two that we have,” said Anderson.
Her doctor suggested a hysterectomy, which is the removal of the uterus and ovaries.
“It doesn’t cure it, but it would take away painful periods,” she said. “I fought it for 22 years, had 8 surgeries, managed to get two miracle babies. I should be able to run around and play with my 1-year-old and 7-year-old.”
Anderson decided that was what she would do, and in February, she had the surgery to remove her uterus.
“I know that it’s going to be different and I’m going to be better,” she said. “I still have some pain, but I can tell its surgical pain, not endo pain.”
She will have to be on hormone medication for the rest of her life, and be careful with the dosage because too much estrogen can cause a spike in endometriosis, which will still be in her body as there is no cure.
“I distinctly remember when I was 14 wondering why it was so painful,” said Anderson. “ I missed school.”
Anderson also had her appendix removed, as it had also been affected by the disease. She later discovered that the cyst she had removed from her at 18 was an endometrial cyst. If that type of cyst bursts, it acts like a tar and can fuse internal organs together. She would find out this is why she had so much pain with her second pregnancy, because her uterus and bladder were fused together.
“I had doctors tell me I was depressed because I would come in crying in pain,” she said. “I was my own advocate for a long time. I said to my husband, I feel like I’m giving up, but I’m not, I’m fighting to have a better life. I don’t even know what normal feels like.”
Through her research, Anderson can list the symptoms of the disease, such as pelvic pain, painful periods, constipation, fatigue and even migraines, all of which she had suffered from. 1 in 10 women suffer from this disease.
“I always tell women, never give up,” she said. “I was made to feel like it was in my head. So many women are made to feel that way. Don’t give up, do your research, you’re your own best advocate. It’s very much a real thing.”
Andrerson has listed resources she used in her research, as well as support groups online:
http://centerforendo.com/#home-1 This is the center in Atlanta
Nancy’s Nook Endometriosis Education is a facebook group for the education and support of women with endometriosis