Endometriosis Mythbusters: Separating Fact from Fiction Part 1

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Myth: Endometriosis is just a painful period. 

Myth: Tampons cause endometriosis. 

Myth: Herbal treatments and supplements can cure endometriosis. 

What’s the truth?

Thank you for joining us for our Facebook Live event — Endometriosis Mythbusters: Separating Fact from Fiction. Due to the popularity of this topic, we’ve decided to debunk even more endometriosis myths in our next Facebook Live event.

 

Join us for Endometriosis Mythbusters Part 2 at 2 p.m. ET Wednesday, November 11!

 

Watch the recording here: 

 

Despite affecting at least 11% of women in the U.S., endometriosis continues to be a largely misunderstood GYN condition. From potential causes of endometriosis to wide-ranging characteristics of the disease, there’s a lot of misinformation out there. 

What’s the truth? CIGC Director of Education and Community Outreach Nilofar Kazi joined CIGC co-founder and GYN surgical specialist Dr. Natalya Danilyants to debunk the many falsehoods surrounding endometriosis. 

 

Myth: Endometriosis can be caused by tampon use or a sexually transmitted infection. 

Endometriosis occurs when cells that typically line the uterus begin to grow outside of it. There is no definitive cause of endometriosis, but there are factors that can contribute to the formation of endometriotic lesions.  

Endometriosis is an estrogen-dependent disease. Increased levels of estrogen can lead to the abnormal development of tissue in the uterus. Through a process known as retrograde menstruation, during which menstrual blood flows backward into the pelvis instead of forward through the vagina, this extra tissue can travel into the pelvis and attach to surrounding organs.  

“No one really knows the actual cause of endometriosis, and we may never know” Dr. Danilyants said. “The main focus needs to be on appropriate diagnosis so treatment is not delayed and so endometriosis doesn’t cause permanent damage to organs and fertility. 

 

Myth: Endometriosis can be cancerous or lead to endometrial cancer. 

Endometriosis does not lead to endometrial cancer, which is cancer that originates in the lining the uterus. The presence of endometriosis lesions in other areas of the body does not increase the risk of endometrial cancer.  

To learn more about the risks and characteristics of endometrial cancer, check out our last Facebook Live event. 

 

Myth: You can only get endometriosis past age 30. 

A recent study¹ published in the Journal of Pediatric & Adolescent Gynecology found the prevalence of endometriosis in adolescents to be very high. According to the meta-analysis in the study, of 1,011 adolescents undergoing laparoscopy due to chronic pelvic pain, 648 (64%) were found to have endometriosis.  

“So the conclusion was adolescent girls are just as likely to suffer from endometriosis as adult women,” Kazi said. 

Dr. Danilyants has seen patients as young as 14 with endometriosis. Many young patients visit multiple providers who tell them they’re too young to have endometriosis, a trend that contributes to the delay in diagnosis and treatment for the disease. 

“The delay in diagnosis builds a lot of frustration in thpatient and a lot of mistrust toward medical providers,” Dr. Danilyants said. When you’re a teenager and you’re already trying to fit in — to add pain that no one is recognizing — it can create some long-term psychological damage. It can impact your physical life and ability to participate in social activities. 

Dr. Danilyants suggests doing a laparoscopy just to rule out endometriosis for patients of any age who are experiencing severe symptoms once they have begun menstruating. The risks are low compared to the benefits of diagnosing endometriosis earlier and giving patients the treatment they need to live a higher quality of life. 

 

Myth: White women are more likely to have endometriosis compared to women of other races. 

Endometriosis can be difficult to diagnose. A patient can have a completely normal ultrasound or scan that shows nothing out of the ordinary and still have severe endometriosis. When physicians dismiss an entire group of people because they believe their likelihood of having endometriosis is low, they worsen the already high rate of misdiagnosis in Black women. 

A lot of Black women have endometriosis, and a lot of the time it will be diagnosed during fibroid removal surgery as a secondary condition,” Dr. Danilyants said. The benefit of doing these surgeries laparoscopically is we’re able to see endometriosis lesions that otherwise may have been missed during open surgery. So it’s important for us to not dismiss patients even if they don’t necessarily fit the mold of who we think should have endometriosis. 

 

Myth: Endometriosis only occurs in the pelvis. 

Although the pelvis is the most common location for endometriosis, lesions can rarely occur in a multitude of areas outside of the pelvis. When lesions are in these atypical locations — which can include the gastrointestinal tract, urinary tract, lungs and breasts, among other areas — endometriosis can be difficult to diagnose.  

If endometriosis is growing into organs like the ureter or the bowel, that’s typically a sign that the disease is at a later stage and needs to be treated by a highly trained excision surgeon.  

 

Do you need an excision specialist? Talk to our patient care team today. 

Talk with a Specialist

 

Myth: Endometriosis is only a bad period and pain only occurs a few days per month. 

At all stages, endometriosis can cause severe symptoms like chronic pelvic pain.  

“It doesn’t have to be only during your period,” Dr. Danilyants said. “The pain can last most of the month.” 

For some, pain may occur mid-cycle or the pain may happen after intercourse or during a bowel movement. For others, the main symptom may be bloating or abnormal bleeding. Endometriosis can mimic the symptoms of other conditions like irritable bowel syndrome, causing gastrointestinal upset.  

“It takes an average of 10 years for patients to be diagnosed with endo,” Kazi said. “That’s even more of a reason to see a GYN specialist earlier on the process when you’re experiencing those symptoms.” 

 

Myth: Alternative treatments like herbal supplements, vaginal steams and detox pearls can cure endometriosis. 

Certain alternative treatments — like acupuncture, physical therapy and nutritional counseling — might help to relieve symptoms, but there is no scientific evidence to back up the effectiveness of herbal supplements, vaginal steams and detox pearls.   

It’s important to separate treatments that are only addressing symptoms from methods that are treating endometriosis itself. Minimally invasive excision surgery treats the disease by removing the lesions. Select alternative treatments can then help to manage the disease after excision surgery. Endometriosis can still recur after surgery, so a treatment plan that includes acupuncture, pelvic floor physical therapy and other research-backed methods can slow the recurrence rate and help to manage residual pain. 

As for vaginal steams and detox pearls, these alternative treatments may do more harm than good. Find out why by reading our blog post on this topic. 

 

For the truth behind even more endometriosis myths, look out for Endometriosis Mythbusters Part 2 at 2 p.m. ET Wednesday, November 11 

 

Do you suspect you might have endometriosis? Talk to our patient care team about your diagnosis and treatment options today. 

Talk to a Patient Advocate

 

References: 

  1. Hirsch M, Dhillon-Smith R, Cutner AS, Yap M, Creighton SM. The Prevalence of Endometriosis in Adolescents with Pelvic Pain: A Systematic Review [published online ahead of print, 2020 Jul 29]. Pediatr Adolesc Gynecol2020;S1083-3188(20)30287-4. doi:10.1016/j.jpag.2020.07.011 

 

CIGC Wellness Center

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We are pleased to announce the recent opening of The CIGC Wellness Center at our Rockville, Maryland location. CIGC Wellness Center offers an integrative approach to treating complex GYN conditions through holistic therapies such as acupuncture, physical therapy and nutritional counseling.

 

Each patient’s Wellness Center experience will begin with an evaluation  with one of our GYN specialists, who will then recommend a treatment plan based on each patient’s individual needs and interests.

Our initial slate of therapies includes accupuncture, nutritional counseling, pain management, pelvic floor physical therapy, physical training and psychotherapy.

 

What You Need to Know About GYN Cancers

Blog Feature FinalIn recognition of September’s Gynecological Cancer Awareness Month, CIGC Director of Education and Community Outreach Nilofar Kazi joined CIGC co-founder and surgeon Dr. Natalya Danilyants to talk about screening and prevention. They discussed the prevalence of gynecological cancers, common symptoms and what questions women should ask their doctors. Watch the recording or read the recap on our website. 

Learn More