BAXTER, Minn. — Taylor Lee knows pain in a way that only a woman could know.
But the Baxter woman, who recently had her uterus removed, wants to spare other women the pain she endured from endometriosis, which was prolonged by misdiagnosis.
“I want to help the community members live long, happy lives and aid in the diagnosis,” Lee said. “I have been battling this disease for eight years and currently recovering from a total hysterectomy and endometriosis excision at the age of 25.”
Endometriosis is an often painful disorder in which tissue that normally lines the inside of a woman’s uterus grows outside the uterus. It commonly involves the ovaries, fallopian tubes and the tissue lining the pelvis, according to the Minnesota-based Mayo Clinic.
“It has a special place in my heart,” Lee said of endometriosis and its primary symptom of pelvic pain, often associated with a woman’s menstrual period.
“I started developing symptoms probably late teens … and not just, like, pain in terms of my (menstrual) cycling but in terms of just no energy and kind of flu-like symptoms.”
According to experts at the Mayo Clinic, many women have cramps during their period, but those with endometriosis typically describe the pain as “far worse than usual” and tend to report that the pain increases over time.
“Unfortunately, most women do not even know that they have it and are misdiagnosed with other conditions, or it is just ignored,” Lee said.
Cysts could form when endometriosis involves the ovaries, according to experts. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other.
“I just felt crappy from the beginning, and then it started progressing where it was more pain certain times of the month, and then I went to doctor to doctor, and they told me it was -- I was misdiagnosed with some digestive diseases, which was totally out of the question,” Lee said.
Lena Dunham of the HBO series “Girls” was profiled last month for New York Magazine about her experience with endometriosis and how it is commonly dismissed as just a “painful period.”
“It is a chronic reproductive disease that affects several women ... that 1 in 10 women suffer from daily,” Lee said.
Like Lee, Dunham had a hysterectomy and consequently is unable to have biological children. And the 31-year-old actor/director is quite candid on social media about her ordeal, just like Lee.
“Recently, there has been a couple of commercials on TV drawing awareness to this disease in which the endo community is very thankful for. However, there needs to be more awareness,” Lee said.
“I had no clue what endometriosis meant when I was first officially diagnosed in the beginning of 2018, and the best way you can diagnose it is surgery and to actually go in and look around.”
“The doctors can just suspect it,” Lee said of the reproductive disease. “But they’ll determine it once you go under the knife.”
She was “relieved” when she was finally diagnosed with endometriosis, which is especially common among women in their 30s and 40s and may make it difficult to get pregnant, according to the Office on Women’s Health of the U.S. Department of Health and Human Services.
“Because a lot of times when you go through life and are not diagnosed with something, you feel really crappy … but now when you have a name for why and why you feel that way, you don’t feel ‘crazy,’ I would say,” Lee said.
Supplemental hormones may reduce or eliminate the pain of endometriosis. Hormone medication may slow endometrial tissue growth and prevent new implants of endometrial tissue, but the painful symptoms may return after stopping treatment, according to the Mayo Clinic.
“When you go through many years, like I have been, of struggling with health and not feeling normal and not being able to do what you want to do and live life, having a relief -- regardless of what it is -- is something to be happy about,” Lee said of her hysterectomy.
Lee even posted a photo of herself on Instagram holding a homemade sign that read “Goodbye uterus at 25.” She said she may someday start a local endometriosis support group.
“I do have a friend that started having the same symptoms as I did, and I thought that was very familiar, so then recently I said, ‘You need to go to the doctor,’ and lo and behold, she was diagnosed with endometriosis, too,” Lee said.
“But I am feeling fabulous physically now … and it’s hard to remember what I felt like before.”
7 signs of endometriosis
Pain in your pelvic area, belly or lower back.
Pain during or after sex.
Difficulty getting pregnant.
Pain with bowel movements or urination.
Fatigue and digestive symptoms.
Source: Mayo Clinic