What Is Endometriosis?
Below you’ll find a collection of the most frequent questions and answers people send our way. We hope that you will find the answers you’ve been looking for. Still searching? Feel free to contact us and we’ll do our best to provide you with answers.
WHAT IS ENDOMETRIOSIS?
Endometriosis is a chronic, whole body, inflammatory disease where endometrium-like tissue (tissue similar to the lining of the uterus) forms lesions outside the uterus (International Working Group of AAGL, ESGE, ESHRE and WES, 2021). Endometriosis is much more than just a painful period and often results in dysfunction of multiple organ systems for the 1 in 10 women affected by the disease. It is most common during the reproductive years but can begin before the first menstrual cycle and persist even after a hysterectomy (Center for Endometriosis Care [CEC], 2023).
Endometriosis is most often found in the pelvis but can occur throughout the body, including the abdomen, diaphragm, and lungs. There are also very rare cases of even more widespread disease (CEC, 2023; CEC, n.d.).
WHAT ARE THE SYMPTOMS OF ENDOMETRIOSIS?
*Pain that interferes with your daily functioning is NOT normal*
Common symptoms of endometriosis can include:
Abdominal or pelvic pain (occurring with menstruation or throughout the month)
Chronically heavy or long periods
IBS-like symptoms such as bloating, nausea, diarrhea and/or constipation
Pain with bowel movements
Rectal or gluteal pain
Urgency or frequency
Chronic urinary tract infections
Pain with sex or tampon use
Lower back pain (can also include sciatic leg pain)
Commonly accompanied by autoimmune conditions
*Think you may have endo but not quite sure? Click below to do a self-screening questionnaire*
Where It Occurs
Endometriosis is most often found in the pelvis but can occur throughout the body including in the abdomen, diaphragm, and lungs. There are also rare cases of even more widespread disease (CEC, 2023; CEC, n.d.). While it is often staged on a scale of one to four based on the extent of the disease and depth of lesions, this system was initially designed as a scale to measure potential impact on fertility and is not useful for predicting severity of symptoms. There are patients with stage one endometriosis who report higher pain levels than patients with stage four. An endometriosis expert may use the staging system to describe the extent of the disease and where it has spread but should not dismiss pain and symptoms because of a lower stage.
HOW IS ENDOMETRIOSIS DIAGNOSED?
The only official diagnosis for endometriosis is through laparoscopic surgery, where a surgeon inserts a camera through a small incision to visualize endometriosis lesions, as well as take samples to send to the laboratory for pathological confirmation. While other types of imaging, such as MRI’s and ultrasounds, can be utilized by highly trained specialists to suggest the presence of endometriosis prior to surgery, imaging often misses endometriosis so it alone can not diagnose the disease.
The ability of imaging to confirm or rule out endometriosis is a common misconception amongst even most OBGYN’s claiming to specialize in endometriosis. Because of a widespread lack of understanding regarding the systemic (whole body) nature of this disease, its inflammatory effects, and inappropriate diagnostic methods, the average time to diagnosis is approximately nine years (Endometriosis Foundation of America, n.d.; Nancy’s Nook, n.d.). Even after diagnosis, few receive appropriate treatment as only about 100 of the over 21,000 OBGYN’s in the United States have the advanced training to appropriately diagnose and treat it (U.S. Bureau of Labor Statistics, 2022; Laux, 2023). The search to find an endometriosis excision specialist is often a challenging one, but expert care is life changing.
HOW DO I TREAT ENDOMETRIOSIS?
Expert Excision Surgery
The gold standard of care for endometriosis is excision surgery. Ablation surgery, a common method of treatment currently, just burns the top layers of the endometriosis lesion off whereas excision surgery cuts out the disease much like a tumor is removed, all the way down and around until normal tissue is reached (Nancy’s Nook, n.d.). Medications can help suppress symptoms but do not treat the disease or stop its spread.
If this concept feels confusing, think of each endometriosis lesion like a tree. Ablation surgery takes off the top leaves and branches but the root system (the deepest cells causing that tissue to grow there in the first place) remains intact and the tree regrows. Excision surgery cuts out the tissue entirely, much like digging deep into the ground and removing both the root system and the tree. Furthermore, if the tissue is burned away through ablation, it cannot be sent to the laboratory for pathological testing, where the cells themselves are examined and confirmed to be endometriosis or identified as something else, as excision surgery allows.
Excision surgery has been shown through decades of research to result in a significant improvement in quality of life, a lower chance of disease recurrence (around 15% following excision surgery compared to 40%-60% following ablation), and improvement in fertility when compared to medication management or ablation (CEC, n.d.; Yeung et al., 2011; Nancy’s Nook, n.d.). However, excision is practiced only by select highly skilled OBGYN specialists who have received significant advanced training in endometriosis when compared to most OBGYN’s. As mentioned above, there are only about 100 excision specialists out of over 21,000 OBGYN’s in the United States (U.S. Bureau of Labor Statistics, 2022; Laux, 2023). It is not enough for an OBGYN to claim to specialize in endometriosis, successful treatment is dependent on seeking out an excision specialist as their knowledge of the disease is unparalleled. The additional training allows these specialized surgeons to better recognize endometriosis lesions, remove them more completely, and handle the complexity of cases involving multiple organ systems (CEC, n.d.; Nancy’s Nook, n.d.). This, in turn, provides the patient with a better quality of life.
The resources section of this website lists the four endometriosis excision surgeons in Minnesota and a comprehensive list of surgeons, both nationally and internationally, can be found on Nancy’s Nook Endometriosis Education facebook page under the files tab. The PDF is titled Surgeons_International Excision Surgeon Listing and is updated regularly.
Endometriosis is a systemic (whole body) disease and includes more changes than just the growth of endometriosis tissue. Expert excision surgery, considered the cornerstone of effective disease management for most patients, is only part of the journey. Managing endometriosis is a lifelong process that involves a diverse care team, tailored specifically to the care of each patient, and intentional lifestyle changes on the part of the patient. Years of pain and inflammation frequently have lasting effects on fatigue, digestion, etc. Many patients report a combination of dietary and lifestyle changes, holistic therapies such as acupuncture and herbal supplements, consultations with chiropractic and functional medicine providers, massage therapy, mental health support, and pelvic floor physical therapy to be crucial in living well with endometriosis both before and after excision surgery. Numerous research studies demonstrate the benefit of these various supportive therapies in ongoing disease management (Denman, n.d.; Nancy’s Nook, n.d.). For more information, visit the resources section of the website and scroll down to the bottom of the page.
Hormonal Therapy and Ablation Surgery
As discussed above, the vast majority of OBGYN’s are taught based on incorrect theories of disease origin and management, resulting in delayed diagnosis, mismanagement, and poor outcomes.
The two most common forms of endometriosis management, hormonal birth control and ablation surgery, are among these ineffective treatments. Endometriosis is an estrogen dependent disease, meaning it requires the hormone estrogen to grow and spread. It was originally believed that decreasing levels of estrogen (by suppressing the ovaries, where most of the estrogen in the body is formed) through hormonal birth control could minimize disease, as well as limit retrograde menstruation by stopping the menstrual cycle. If medical management fails, most OBGYN’s recommend ablation surgery where the endometriosis tissue is burned away.
In the 1990’s, as endometriosis began to be further studied, it was found that, while similar to the tissue that lines the uterus, endometriosis cells have distinct differences, including the ability to produce their own estrogen (Bulun et al., 2012.; Chantalat et al., 2020.; Nancy’s Nook, n.d.). Therefore, even if ovarian estrogen production is minimized through hormonal medication, the endometriosis cells can produce their own to continue growing, meaning hormonal treatments alone are not enough to stop disease spread.
It should be noted that, while hormonal management of endometriosis is not enough to stop or cure the disease, it can be helpful for symptom management temporarily when prescribed appropriately by an endometriosis expert. The choice of whether to utilize medications is complex, therefore advantages and disadvantages are best discussed on a case by case basis (Nancy’s Nook, n.d.). For more information on medical vs. surgical management of endometriosis, follow the link below.
The second common method of treatment, ablation surgery, results in incomplete disease removal and leaves behind cells that can grow back, causing pain and symptoms to return. This is one of the reasons endometriosis patients often have surgery every few years for much of their adult life as they attempt to control the effects of the disease. This failure to see significant improvement in symptoms often leads to an early hysterectomy, with the patient being told this will cure the disease. However, endometriosis doesn’t originate from the lining of the uterus and it can produce its own estrogen to grow and spread even without the ovaries and uterus. This means it can potentially start before the first menstrual cycle and continue even after a hysterectomy.
WHAT CAUSES ENDOMETRIOSIS?
Throughout the course of the month, the inner lining of the uterus (called the endometrium) grows and thickens to prepare for a possible pregnancy. If no pregnancy occurs, this layer of cells is sloughed off and blood exits the body through the vagina resulting in a period.
Originally, endometriosis was thought to be caused by the retrograde (backward) flow of blood during a menstrual cycle (Mayo Clinic, 2018). In retrograde menstruation some blood leaves the uterus through the fallopian tubes, out into the pelvic cavity, where it becomes trapped. It was previously believed that endometrial cells carried by this blood would become lodged in various places and, under certain conditions, begin regrowing in their new location (CEC, n.d.). However, the theory of retrograde menstruation fails to explain the growth and spread of endometriosis tissue as endometriosis has been found as far as the lungs, brain, and sinuses, far beyond the reaches of this backward flow. In addition, it has been found that the cells removed from patients with endometriosis are not identical to endometrial cells found in the uterine lining.
A more reliable theory of endometriosis development is that cells are present during fetal development and are turned on later in life by triggers in the environment, changes in the immune system, or inflammation.
While it is not known exactly how endometriosis develops, and the answer is likely a complex one, the theory of retrograde menstruation is clearly outdated. For more information, follow the link below.
WHAT IF I THINK I HAVE ENDOMETRIOSIS?
Get in touch with an endometriosis specialist. It is important to seek out an expert in endometriosis and not just any OBGYN or Primary Care doctor you might already be seeing as a patient. Very few OBGYN’s, even those stating they work with endometriosis, are true specialists who are equipped to treat this complex disease fully.
Endometriosis specialists have the greatest knowledge about this chronic inflammatory disease. They understand the symptoms you are experiencing and discuss the diagnosis and treatment options. They have the highest level of communication and care about the complexity involved that could also involve perspectives and expertise of other specialists to form a care team that includes Gastroenterologists, Pelvic Floor Therapists, Fertility Specialists, Mental Health Counselors/Therapists, Pain Specialists, Massage Therapists, Acupuncturists, and Dietitians/Nutritionists along with your current primary care and OBGYN physicians.
Endometriosis specialists have the surgical expertise to perform laparoscopic surgery to diagnose and assess the stage of disease as well as excision surgery to remove endometrial implants, tissue, adhesions and endometriomas. They will be able to counsel and consult with you on the best options for your health and wellness goals that include monitoring and managing your symptoms and helping to prevent or slow disease progression.