Understanding PCOS & Endometriosis
- “How I Met Your Father” actress Francia Raisa has been diagnosed with a chronic disease called endometriosis, small intestinal bacterial overgrowth (SIBO), and polycystic ovary syndrome (PCOS)—something she previously admitted she’s “still learning to live with.”
- Polycystic ovary syndrome (PCOS) stems from a hormone imbalance impacting women during their reproductive years.
- Endometriosis occurs when tissue similar to the tissue that normally lines the inside of the uterus, known as the endometrium, grows on the outside of the uterus. It often brings debilitating pain and can often be difficult to diagnose.
- We admire Francia Raisa’s decision to share her diagnosis to spread awareness for endometriosis, PCOS, and small intestinal bacterial overgrowth (SIBO). The choice to share or not share one’s cancer diagnosis is a personal one for anyone facing the disease, even if they’re not a celebrity. While some people choose to share only with close friends and family, others post their entire journey on social media, create blogs and detail their treatments, side effects and doctor reports.
- 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.
We’re admiring Raisa’s ability to speak on such a personal matter as doing so will raise awareness to other women to always push for answers when it comes to your health.
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She continued, “I was in shock. What strikes me the most is that it’s not enough that I take care of my health and body.
“With all the advances in medicine, there still isn’t enough research being done into women’s specific health care to really understand how women like me are able to ensure our opportunity to have a healthy life and family.”
Expert Resources On Endometriosis & PCOS
- Endometriosis Vs. Endometrial Cancer — What’s the Difference?
- Endometrial Cancer — Choosing The Right Doctor
- Endometrial Cancer — How to Spot the Signs And Symptoms Earlier
- For Women With Hormone Disorder PCOS Like Singer Bebe Rexha, 33, Doctors Should Assess for Body Image Concerns, New Research Suggests: Coping With Body Changes
- Alert For Women Like Victoria Beckham: The Condition Called PCOS Is ‘Significantly Associated’ with ‘Higher Risk’ for Endometrial Cancer — Staying on Top of Your Health
- Mental Health Alert— Fitness Guru Jillian Michaels & Millions Dealing with PCOS— The Major Depression Risks and How To Get Help
Raisa’s informative social media post comes about one year after she first revealed in a temporary Instagram post that she was diagnosed with polycystic ovary syndrome (PCOS) and was still learning how to cope with the condition.
“My friend wrote a book about PCOS,” Raisa wrote alongside a photo of a book titled “Living With PCOS: Road To Reversal,” according to People.
She added, “I also have PCOS and still learning how to live with it. Thanks for this @candice.”
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Meanwhile, as Raisa is also living with the painful disorder called endometriosis, a condition associated with infertility, she previously spoke on the show “The Talk” about freezing her eggs at age 28.
“I don’t want to settle. I really want to wait for the right person. I really want to be friends with someone first and really know you, because I don’t want to have to worry about that again ever.
“Now I’m not in a rush to, you know, get into a relationship because my ‘biological clock is ticking.'”
Learning About PCOS
Polycystic ovary syndrome (PCOS) stems from a hormone imbalance impacting women during their reproductive years.
While health experts can’t pinpoint the exact cause of PCOS currently, the CDC says women with higher-than-normal androgen levels play a role in developing the condition. Other risk factors include being insulin resistant or overweight if you have a family history of PCOS or type 2 diabetes.
The National Institutes of Health points to the following symptoms that are associated with the condition.
- Menstrual irregularities (missed periods, no menstrual periods, very heavy periods)
- Excessive hair growth
- Severe acne
- Weight gain
- Oily skin
- Patches of thick discolored skin
While there is no cure for PCOS, leading a healthy lifestyle that includes proper diet and exercise helps. Medicines can also help with associated symptoms.
According to the National Institutes of Health, “PCOS increases the risk of some types of cancer. For instance, some research has shown that risk of cancer of the endometrium, the inside lining of the uterus, may be higher for women with polycystic ovary syndrome (PCOS) than it is for women without PCOS. Irregular periods, or a lack of periods, can cause the endometrium to build up and become thick. This thickening can lead to endometrial cancer.
“Data on links between breast cancer, ovarian cancer, and PCOS are limited. While some small studies have suggested that a lack of ovulation, as occurs with PCOS, is linked with an increased risk of breast cancer, other studies have not shown an association.”
The NIH adds, “While some research has shown more than a doubling of the risk of ovarian cancer in women with PCOS, scientists have not confirmed these links in large population studies, and further studies hint that women with PCOS may have a lower risk of ovarian cancer. Therefore, any associations between breast or ovarian cancers and PCOS remain inconclusive.”
What is Endometriosis?
Confusion may exist about whether endometriosis is linked to cancer, but there’s no research that connects the two together. Although endometriosis may present symptoms similar to endometrial cancer, it is “not cancer,” OB/GYN and oncologist at Cedars-Sinai Medical Center Dr. Bobbie Rimel previously told SurvivorNet.
“Endometriosis is the term for whenever those endometrial cells, those lining of the uterus cells, are outside of their normal place, which is inside the uterus,” Dr. Rimel explained, again adding that it is a benign condition, which means non-cancerous.
Dr. Bobbie Rimel explains the difference between endometrial cancer and endometriosis.
“Endometrial cancer is actually when cells of the lining of the uterus become cancerous and begin to invade the uterus wall,” Dr. Rimel continued. “[The cancer cells] may spread to the fallopian tubes, to the ovaries or the lining of the pelvis or elsewhere in the body.”
According to Johns Hopkins Medicine, endometriosis usually occurs on or near reproductive organs in the pelvis or abdomen, can be found in other areas such as the fallopian tubes, ligaments around the uterus (uterosacral ligaments), lining of the pelvic cavity, ovaries, outside surface of the uterus, space between the uterus and the rectum or bladder.
In rare circumstances, it can also grow on and around the bladder, cervix, intestines, rectum, stomach (abdomen), and vagina or vulva.
According to the World Health Organization (WHO), “Endometriosis often causes severe pain in the pelvis, especially during menstrual periods. Some people also have pain during sex or when using the bathroom. Some people have trouble getting pregnant.
“Some people with endometriosis don’t have any symptoms. For those who do, a common symptom is pain in the lower part of the belly (pelvis). Pain may be most noticeable during a period, during or after sex, when urinating or defecating.”
Some people may also experience the following symptoms:
- Chronic pelvic pain
- Heavy bleeding during periods or between periods
- Trouble getting pregnant
- Bloating or nausea
- Fatigue
- Depression or anxiety
Endometriosis Treatment
One of the signature identifiers for endometriosis is the severe pain it brings. Although endometriosis isn’t curable, its symptoms can be managed for a better quality of life.
According to the National Institutes of Health, hormone therapy can be an effective treatment option to manage pain.
“Hormone treatments stop the ovaries from producing hormones, including estrogen, and usually prevent ovulation,” the NIH explains. By cutting off estrogen, the activity of the endometrium and endometrial lesions slows down.
Surgery is an option for severe cases where pain is intolerable. Surgeons can remove endometriosis lesions (also called patches) of endometrial tissue often found in the pelvis.
Pain medications are also an option to manage symptoms.
What is Small Intestinal Bacterial Overgrowth (SIBO)?
According to Yale Medicine, “Small intestinal bacterial overgrowth (SIBO) is a gastrointestinal condition characterized by an excessive growth of bacteria in the small intestine, leading to improper nutrient absorption and various digestive symptoms.
“It can be caused by factors such as slow intestinal motility, anatomical abnormalities, or immune system dysfunction.”
As per the National Library of Medicine, SIBO is described as “the presence of excess colonic bacteria in the small intestine.”
“In contrast to the large intestine, the concentration of the bacteria in the small intestine rarely exceeds 1000 organisms/mL. Gastric acid secretion and intestinal motility limit the overgrowth of bacteria in the small intestine,” the National Library of Medicine explains.
“When these protective mechanisms against excessive bacterial growth fail, small intestinal bacterial overgrowth (SIBO) can manifest.”
The Choice to Share
We admire Francia Raisa’s decision to share her diagnosis to spread awareness for endometriosis, PCOS, and SIBO. The choice to share or not share one’s cancer diagnosis is a personal one for anyone facing the disease, even if they’re not a celebrity. While some people choose to share only with close friends and family, others post their entire journey on social media, create blogs and detail their treatments, side effects and doctor reports.
According to Dr. Renee Exelbert, a licensed psychologist and founding director of The Metamorphosis Center for Psychological and Physical Change in New York, the decision to openly disclose or not disclose one’s diagnosis may be made more complicated for someone in the public eye, as they may feel pressure to serve as a role model, or to use their notable platform for the greater good.
She says public figures and celebrities are often held to a harsher standard, frequently having their appearance and behaviors rigorously evaluated. This might make hiding a cancer diagnosis more difficult and may also make disclosing a cancer diagnosis a greater burden to bear. Also, just because someone is a public figure or celebrity does not spare them from judgment and the insensitive comments of others, especially while they may be fighting for their life.
Dr. Exelbert says the decision to disclose or not disclose a cancer diagnosis is a very individual and personal one in any case.
“Certain Individuals may feel as though their sense of self has been deeply impacted by their diagnosis, and they want to keep it private. At their core, certain individuals may struggle with appearing weak, vulnerable or sick, and particularly do not want to withstand the opinion or commentary of others while facing a cancer diagnosis,” she explained. “Additionally, some may feel that revealing a cancer diagnosis may pose a threat to their sense of professional identity and how capable they are perceived by others.”
Dr. Exelbert also said some may feel they don’t have the coping resources to withstand scrutiny, whereas others may welcome the distraction and attention. Most importantly, however, she said there is no right or wrong approach.
“When an individual experiences trauma, which cancer certainly is, they need to be in charge of how their story is told in order to avoid further disempowerment. Thus, the decision to disclose or not to disclose should be wholly and rightfully left up to each individual.”
So, is one way more beneficial than the other? Dr. Exelbert says there are pros and cons to sharing.
“A positive aspect of sharing one’s diagnosis on social media is the potential to receive an outpouring of support, occasionally from people all over the world who have experienced something similar, and who may be able to offer useful suggestions,” Exelbert says. “Additionally, someone’s unique story may catch the attention of those performing clinical trials or offering unique treatment options, looking for participants.”
She said the ability to inspire countless people with one’s experience and story can also be a very powerful motivating factor.
“Some individuals are looking to chronicle their journey, almost as testament to what they have experienced and to leave a legacy. It might additionally be beneficial to publicly share one’s story, as it can serve as a platform to educate others about cancer and its emotional and physical symptoms, as well as challenge stigma and change society.”
On the other hand, she says a con of revealing one’s diagnosis on social media is that people may share unsolicited stories of poor outcomes that they have either heard about, or experienced personally, many of which are unrelated to your particular situation. For example, some may tell you they know someone who had the same type of cancer, but died, which can be overwhelming and create undue stress.
“Additionally, once you share your diagnosis, you often have to manage the emotional experience of others,” Dr. Exelbert told SurvivorNet. “Sometimes, people will be very upset by your diagnosis and need you to take care of them or make your situation easier for them to deal with. This can prove quite difficult when you are barely in control of managing your own emotions. Further, many individuals might find it quite difficult to present themselves in such a vulnerable way on social media, as many often utilize this medium to garner accolades from presenting their ‘ideal self’ versus their ‘real self.’”
No matter what someone’s choice is when it comes to sharing a diagnosis, the most important thing is that they feel support. For some, support from a few close friends, family members or professionals may be enough, while others need to feel connected on a larger scale. The last thing anyone needs is to be made to feel bad about that choice.
Contributing: SurvivorNet Staff
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