Living in Chronic Pain: Endometriosis Awareness
When you're thinking about periods and cramps, I'm sure the endometrium, which is the scientific name for the lining of your uterus, might not be what you first think of as the cause of any menstrual symptoms. Endometrium sounds very clinical and formal, but it's the innermost lining of the uterus and plays an integral role in maintaining the uterus's health.
However, there can sometimes be endometrial tissue found outside the uterus. However, the body naturally doesn't like endometrial tissue anywhere outside the uterus. Endometriosis is when endometrial tissue is located outside the uterus, like ovaries or bladder. Endometriosis is a life-long reproductive health condition that can cause pelvic pain, pain during sex, heavy periods, and so many more issues that can make your daily life unbearable.
Due to stigma and shame around discussing menstruation, pelvic pain, or anything related to the uterus, oftentimes, endometriosis is under-diagnosed, overlooked, and dismissed as a mythical "health concern."
Hi, I'm Sadia, a Women's Health Nurse Practitioner that will provide you with answers to top questions on endometriosis and endometrial health. In honor of Endometriosis Awareness month, which occurs every March. Therefore, I will discuss endometrial health because it's a hot topic about women's reproductive and sexual health!
If you're eager to learn all things about the endometrium and endometriosis, this blog post is for you!
What is Endometriosis?
Endometriosis is a health condition that involves the tissue of the endometrium or the lining of your uterus, growing outside of the uterus and in other body regions where it doesn't belong. Endometrial tissue can grow and latch onto the fallopian tubes, ovaries, bladder, and further outside of the pelvic region. In rare cases, endometrial tissue can also be found in the colon and lungs.
When this extra endometrial tissue is outside the uterus, it still behaves as it would inside it. During a menstrual cycle, endometrial tissue naturally thickens, breaks down, and bleeds out of the uterus and vagina. However, the additional endometrial tissue outside the uterus cannot leave the body during your menstrual cycle. As a result, the remaining endometrial tissue stays stuck inside the body, causing adhesions, lesions, or cysts to develop.
For instance, an ovarian cyst or endometrioma is when endometrial tissue binds to an ovary. Another example is when endometrial tissue attaches to the fallopian tubes or bladder, which can cause localized irritation, inflammation, and pain.
Endometriosis can be severely painful, particularly during menstruation, because of the adhesions, cysts, and pelvic pressure from unreleased endometrial tissue. This, in turn, causes chronic pelvic inflammation and can significantly influence someone's quality of life.
It is estimated that 1 in 10 people with a uterus has endometriosis worldwide. Most data and statistics around endometriosis are estimations because many people with uteri often do not discuss their pain or menstrual history. The social narrative around menstruation being a "taboo" subject causes many cases of endometriosis to be underdiagnosed and underreported.
If endometriosis is left untreated, it can lead to infertility, chronic pelvic pain, decreased quality of life, and heavy menses.
Due to medical sexism, lack of funding, lack of research, and lack of awareness surrounding endometriosis, there is still so much more to learn about this common health condition.
What Are the Signs & Symptoms of Endometriosis?
Common signs and symptoms of endometriosis include:
Heavy Menstrual Bleeding
Heavy Menstrual Cramping
Pain During Vaginal or Anal Sex
Pain During Urination
Pain During Defecation
Nausea
Fatigue
Pelvic Pain
While these are common signs and symptoms of endometriosis, some other less common signs are constipation, diarrhea, and lower back pain.
How Is Endometriosis Diagnosed?
The definite standard for an endometriosis diagnosis is examining a lesion obtained during surgery. The most common surgery to determine if someone has endometriosis is laparoscopy. Laparoscopy is a procedure used to examine the pelvic region. Unfortunately, no single non-invasive test can provide an endometriosis diagnosis. Due to all the ramifications of surgery, like cost, scheduling, and being absent from work or school, some people with suspected endometriosis might not be able to obtain a laparoscopy procedure.
If you are an individual with these circumstances, there are possible alternatives to help diagnose whether or not endometriosis is the cause of your reproductive health issues. A medical provider can use the combination of symptoms, health history, and ultrasound findings of a patient to make a suspected diagnosis of endometriosis possibly.
What are the Stages of Endometriosis?
Determining someone's stage or severity of endometriosis can only occur during a laparoscopy by a surgeon. Endometriosis is staged according to the American Society for Reproductive Medicine scoring system, which is listed as follows:
Stage I – Minimal disease is characterized by isolated implants and no significant adhesions.
Stage II – Mild endometriosis consists of superficial implants less than five centimeters in aggregate and is scattered on the peritoneum and ovaries. No significant adhesions are present.
Stage III – Moderate disease exhibits multiple implants, both superficial and deeply invasive. Peritubal and periovarian adhesions may be evident.
Stage IV – Severe disease is characterized by multiple superficial and deep implants, including large ovarian endometriomas. Filmy and dense adhesions are usually present.
After receiving a laparoscopy, the surgeon discusses the stage with the patient and can explain the next steps and management of endometriosis. It is important to note that leaving endometriosis untreated can cause progression from one stage to another over time. But, in some people, endometriosis never progresses. There is no known reason why some people have more or less severe stages than others, so it is essential to contact your surgeon regarding the next steps of your treatment plan.
What Causes Endometriosis?
Unfortunately, there is no known cause for endometriosis. There are several theories on endometriosis' cause, but no definite answer. A couple of possibilities that might cause this chronic reproductive illness include retrograde menstruation, the transformation of cells that line the inner abdomen into endometrial-like cells, embryonic cells transformation, surgical scar implantation, endometrial cell transport, and possible immune system disorders.
Who Is at Risk for Endometriosis?
Some risk factors for endometriosis include:
Never giving birth
Having early menarche (having a period before age 11-13)
Going through menopause at an older age
Experiencing short menstrual cycles — for instance, less than 27 days
Heavy menstrual periods that last longer than seven days
Having higher levels of estrogen in your body
Having a low body mass index
Having One or more relatives (mother, aunt, or sister) with endometriosis
Having a medical condition that prevents the passage of blood from the body during menstrual periods
Having a health condition of the reproductive tract
Being exposed to diethylstilbestrol in utero
Being exposed to severe physical and/or sexual abuse in childhood or adolescence
There is still so much to learn about endometriosis, so this list of risk factors is inconclusive!
How Can I Treat Endometriosis?
In terms of medication, some health care providers might recommend hormonal contraception, such as the pill or intrauterine device to manage menstrual bleeding. Some health care providers might recommend Orilissa. A prescription that's used to manage moderate to severe pain from endometriosis.
If someone has had a laparoscopy, the surgeon might recommend removing adhesions and cysts to alleviate pain and improve quality of life.
Unfortunately, there is no one pill or one surgery to treat endometriosis. Endometriosis is a chronic health condition with no cure. The only option is to manage it. Knowing that there is no cure and that it can present differently in people, managing endometriosis is best done under the guidance of a trusted and accredited health care provider.
How to Live A Fulfilling Life with Endometriosis?
I know I just told you many sad things about this condition that affects 10% of people with a uterus. There's no cure, no way to get a definite diagnosis outside of surgery, and there are so many socialization stigmas around menstruation.
It's confusing. It's complicated. And as a healthcare professional, I understand your frustration when dealing with this dilapidating chronic health issue. Sometimes, living with a uterus can be extremely overwhelming and uncomfortable. I have a uterus, and I empathize with you and your frustration. While I do not have endometriosis, I have seen many people struggle to find access to health care, be taken seriously by health care providers, fight for time off of work, and have the life they desire.
The truth is that living with endometriosis isn't easy. It can feel lonesome, depressing, and be challenging. Remember that you are not alone!
Living with endometriosis doesn't mean your health condition defines you. You are not defined by endometriosis alone. As a result of social media and more women in leadership positions and health care, more people are increasingly becoming aware of endometriosis and demanding their voices be heard.
For instance, EndoBlack, a non-profit founded by Black women, is an excellent community for Black women and non-Black women of color who have endometriosis.
Another group is Endo on Reddit, an online forum where hundreds of public posts discuss endometriosis care specialists and management options daily concerns.
One of the first mainstream celebrities to discuss endometriosis, Padma Lakshmi, founded the Endometriosis Foundation of America, a non-profit dedicated to advocacy and education for people living with endometriosis.
If you are concerned about pelvic pain, menstrual health, or anything else regarding reproductive pain or issues, I recommend reaching out to your health care provider for more information.
Remember to share this post with a friend in honor of Endometrial Awareness Month!
Cited Sources
https://www.reddit.com/r/Endo/
https://www.cnbc.com/2016/05/19/this-neglected-disease-is-a-hidden-drain-on-womens-success.html
https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656
https://www.verywellhealth.com/what-is-the-endometrium-2721857
https://www.womenshealth.gov/a-z-topics/endometriosis
https://www.asrm.org/topics/topics-index/endometriosis/
https://www.uptodate.com/contents/endometriosis-pathogenesis-clinical-features-and-diagnosis
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