Advocating for Your Health as a Woman
- It took years of doctor’s appointments before model Olivia Culpo realized she had severe endometriosis. Now, she’s sharing her story to urge other women to advocate for their health.
- Endometriosis is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus the endometrium grows outside your uterus.
- Sadly, we've heard many stories of women's concerns being dismissed by doctors. That's why being your own advocate can be key to getting a correct diagnosis and obtaining the best treatment possible while dealing with a diagnosis.
- One cancer survivor told SurvivorNet she recommends asking many questions, so doctors "earn that copay."
Endometriosis is an often painful disorder that can be tragically tricky to diagnosis. That’s why we applaud Culpo for sharing the details of her harrowing endometriosis journey in an effort to empower women to take charge of their health care.
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Although she “knew something was wrong with [her] body,” all too many doctors dismissed her concerns as normal discomfort.
“I remember not being able to function,” she explained of her pain. “It was the type of pain that kept me in bed all day. I went to doctor after doctor after doctor, I was told by every single doctor I went to dozens that my periods are normal, that pain is normal and discomfort is normal that I just need to take medicine.”
Doctors tried to prescribe her various medications, but they never seemed to help.
“I was almost made to feel like I was making up my symptoms and overreacting,” she said. “This was something that was very painful physically and also emotionally because my pain was never validated.”
In her caption under the promotional video, Culpo eloquently explained why she wanted to share her story.
“In today's society, women are not empowered to be the expert of our own body,” she wrote. “Being made to feel like my chronic pain was an overreaction was disheartening and confusing. Who was I to disagree with not one, not two, but many highly educated and well-intending doctors?”
“Funny enough, it was the stories I found on Reddit forums, YouTube videos, and instagram accounts that validated what I knew to be true- that my symptoms were not normal and the doctors were wrong. After dozens of wrong turns, I finally landed on the truth, which was that I had severe endometriosis and needed surgery if there was any hope to salvage my reproductive organs. If it wasn't for those who shared their stories on random blog posts, I never would have found the courage to keep advocating for myself. It's a gift to be able to pay it forward by sharing my story. I hope that if nothing else this is a reminder to trust yourself above all and fight for yourself even if it feels like you're a one woman army!”
Culpo, thankfully, got to her correct diagnosis after years of dismissals, but there are still many unknowns. The girlfriend of NFL star Christian McCaffrey previously talked on “The Culpo Sisters” about the effect endometriosis can have on her fertility.
“Endometriosis can affect your fertility in a lot of different ways,” she said on the show. “There is so much that I don’t know about what’s going to happen in the future with that condition and I worry all the time about my timeline. I feel like I have to have kids ASAP.”
Dr. Terri Woodard discusses your options for preserving fertility after a cancer diagnosis.
And though she’s mentioned that her and McCaffrey are “on the same page about having kids,” it’s hard to throw in the complications of potential fertility issues when you’re not quite ready to have children yet.
“He is completely and totally focused on football and he should be,” she said. “He’s 25. He’s not ready to have kids. When you add all of these fertility concerns, it’s definitely very, very stressful.'”
What Is Endometriosis?
Endometriosis is when tissue similar to the tissue that normally lines the inside of your uterus the endometrium grows outside your uterus.
According to an article by MD Anderson Cancer Center, having endometriosis doesn't necessarily increase your cancer risk, and there's no research that links the two together. In addition, endometriosis doesn't carry an increased risk for most other types of gynecological cancer either including endometrial cancer.
There's also no genetic trait associated with endometriosis that could lead to cancer.
Some rare types of ovarian cancer, like clear cell ovarian cancer and endometrioid ovarian cancer, are more common in women with endometriosis. But the risk is still lower than 1 percent with those cancer types.
The primary symptom of endometriosis is pelvic pain, which is often associated with menstrual periods. Although many experience cramping during their menstrual periods, people with endometriosis typically describe menstrual pain that is far worse than usual and may increase over time.
Common signs and symptoms of endometriosis include the following, according to the Mayo Clinic:
- Painful periods (dysmenorrhea). Pelvic pain and cramping may begin before and extend several days into a menstrual period. You may also have lower back and abdominal pain.
- Pain with intercourse. Pain during or after sex is common with endometriosis.
- Pain with bowel movements or urination. You’re most likely to experience these symptoms during a menstrual period.
- Excessive bleeding. You may experience occasional heavy menstrual periods or bleeding between periods (intermenstrual bleeding).
- Infertility. Sometimes, endometriosis is first diagnosed in those seeking treatment for infertility.
Fatigue - Diarrhea
- Constipation
- Bloating
- Nausea
Endometriosis can be hard to diagnose, so don’t be afraid to get multiple opinions if you feel like the changes to your health aren’t being properly addressed.
How to Advocate for Your Health as a Woman
Olivia Culpo's story is, sadly, not the first of its kind. In fact, we've heard many women talk about how their health concerns were not taken seriously prior to a very serious diagnosis.
In a previous interview with SurvivorNet, April Knowles explained how she became a breast cancer advocate after her doctor dismissed the lump in her breast as a side effect of her menstrual period. Unfortunately, that dismissal was a mistake.
Knowles was diagnosed with metastatic breast cancer at age 39. She said the experience taught her the importance of listening to her body and speaking up when something doesn't feel right.
I Wanted My Doctor To Like Me, Then He Missed My Breast Cancer
"I wanted my doctor to like me," she said. "I think women, especially young women, are really used to being dismissed by their doctors."
Jenny Saldana is another woman who's spoken up about advocating for yourself. She says she was told "you can't keep coming back here taking up resources for women that really need them" when she was trying to get her breast cancer diagnosis.
"The squeaky wheel gets the oil," she said as advice for others.
Advocating For Yourself While Navigating the Medical World
Evelyn Reyes-Beato feels similarly. As a Latina like Saldana and a colon cancer survivor, she urges people to "get knowledge" so they won't feel intimated by their doctors. She wants to remind others that they have a right to ask questions and make physicians "earn that copay."
Dr. Zuri Murrell, director of the Cedars-Sinai Colorectal Cancer Center, previously told SurvivorNet that healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources.
"The truth is you have to be in tune with your body, and you realize that you are not the statistic," he said.
Be Pushy, Be Your Own Advocate… Don't Settle
Dr. Murrell says not every patient will "fit into" the mold, so it's important to "educate yourself and be your own health care advocate."
"Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn't work, what the next plan is," Dr. Murrell said. "And I think that that's totally fair. And me as a health professional that's what I do for all of my patients."
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