What is Endometriosis?

Endometriosis is a complex, often painful disorder where tissue similar to the lining of the uterus (endometrium) implants and grows outside the uterus. One of the most frustrating aspects of endometriosis is the wide range of painful experiences it can cause. Some women experience debilitating pain while others feel little to no pain at all.  While endometriosis primarily affects the reproductive and digestive systems, it can indirectly cause musculoskeletal pain throughout the body and research has even linked it to headaches including migraines.  

Endometriosis is a surprisingly common condition but pinpointing its exact prevalence is challenging.  The most generally accepted estimate is that approximately 10-15% of women of reproductive age in the U.S. have endometriosis.  However many cases of endometriosis go undiagnosed due to the normalization of painful periods, lack of awareness of the disorder, and some women with mild symptoms may not seek medical help or might self-manage symptoms.  Furthermore, confirming endometriosis definitively requires laparoscopic surgery, which is not done for everyone experiencing suggestive symptoms and perhaps is why endometriosis is sometimes misdiagnosed as IBS, pelvic inflammatory disease, and other disorders.

Where Can Endometriosis Grow in the Body?

While endometriosis occurs most commonly in the pelvic region, it has a surprising ability to grow in various unusual locations including the skin, lungs, and even the brain.  But the pelvic organs and lining (peritoneum) are more common locations where endometriosis is typically encountered.  In addition, endometriosis can grow inside or on the surface of the fallopian tubes, potentially blocking them.  Endometriosis can also grow on the ovaries, growing cysts called endometriomas. Those cysts are typically filled with old blood, otherwise described as “chocolate cysts”. The fluid in the cyst is very inflammatory and can affect the quality of the eggs growing on that ovary. 

Other common locations include the uterosacral ligaments, which are ligaments that connect the uterus to the backbone. These ligaments are dense with nerves and endometriosis on them can cause bladder and bowel symptoms, as well pain during intercourse and deep pain radiating down the legs. Within the abdomen is also fairly common with intestinal endometriosis emerging from lesions growing directly on the surface of the intestines, particularly the large intestine (colon & rectum, hence the term bowel endometriosis).  Endometriosis on the uterus, ovaries, or pelvic lining can gradually invade the bowels as the disease progresses, most often the large intestine (colon), but it can affect any part of the digestive tract. Endometriosis can strike the appendix and cause inflammation and pain mimicking appendicitis.  Endometriosis can grow into the bladder wall or affect the ureters (tubes from the kidneys to the bladder).   It’s also worth noting endometriosis can develop in incisions from previous surgeries, such as a C-section scar.

Why Does Endometriosis Spread in the Body?  

The exact reason why endometrial tissue spreads and implants outside the uterus is still being researched.  There are theories the spread is due to immune system dysfunction where the body doesn’t clear away the misplaced tissue.  Another theory suggests it’s transported through blood or lymph systems, or from the menstrual blood flowing backward through the fallopian tubes otherwise known as retrograde menstruation” 

Endometriosis implants contain endometrial cells and tissue fragments that can implant onto pelvic organs (like ovaries, fallopian tubes) or the lining of the abdomen (peritoneum).   Similar to endometrial tissue inside the uterus, these implants respond to changing estrogen and progesterone levels throughout the menstrual cycle. The bleeding and inflammation they trigger can lead to pain, scar tissue formation, and potentially further spread of endometriosis.Most women experience some retrograde menstruation, but not all develop endometriosis, explaining why endometriosis is often found in the pelvic cavity, near the openings of the fallopian tubes. Research indicates women with a close relative with endometriosis may also develop endometriosis suggesting a predisposition, genetic and hereditary component is involved with the disease. However it’s unlikely that retrograde menstruation alone explains all cases of endometriosis, particularly those in distant locations throughout the body.   This is where blood or lymph systems where cells travel throughout the body likely play a role as well. The theory of retrograde menstruation has also been argued by many to be an inadequate explanation but remains a proposed theory to explain the growth of endometriosis.

What Does Endometriosis Do Inside the Body?

Endometrial tissue outside the uterus acts similarly to the uterine lining throughout the menstrual cycle. It thickens, breaks down, and bleeds in response to hormonal fluctuations monthly.  However unlike regular periods, the blood from endometriosis implants has no way to exit the body. This causes inflammation, pain, cysts (endometriomas), and scar tissue formation.

The bleeding and subsequent immune response creates a state of chronic inflammation within the pelvis or wherever the implants are located. This inflammation is a root cause for many of endometriosis’s painful symptoms, including period pain, pain during sex, and chronic pelvic pain.  The body’s attempts to heal lead to scar tissue formation and adhesions – bands of fibrous tissue that bind organs together.  Adhesions can distort the normal position of pelvic organs – ovaries, tubes, uterus – hindering function and contributing to pain.  

Endometriosis can block fallopian tubes, preventing sperm and egg from meeting. Endometriomas on ovaries can displace healthy tissue and affect egg release.  Inflammation caused by endometriosis may disrupt a fertilized egg’s ability to implant in the uterus. In some cases, endometriosis can even interfere with ovulation itself.  

Pain doesn’t always equal the extent of endometriosis seen during surgery. Some women with mild endometriosis have intense pain, while others with severe cases have few symptoms.  How a woman’s body reacts to endometriosis varies greatly. The location of implants plays a significant role as well.

While most common within the pelvic area, endometriosis can spread to bowels, the diaphragm, and rarely even more distant locations in the body.  The chronic inflammation can impact overall health, contribute to fatigue, and affect mental well-being.  Understanding endometriosis behavior is crucial for effective management and treatment. This disease requires an ongoing, personalized approach due to its complexity.  Please let me know if you’d like to delve deeper into any specific aspect of how endometriosis behaves, such as its impact on fertility or the inflammation process!

Signs & Symptoms of Endometriosis

Endometriosis can cause a wide range of symptoms, which vary greatly in type and severity from woman to woman.  Pain often exceeds typical period cramps, and sometimes debilitates.  Discomfort may begin several days before your period and continue for an extended period. Pain is not limited to just cramps and can radiate to other areas.

• Chronic Pelvic Pain: A persistent ache or pressure in the lower abdomen, even between menstrual cycles.  Deep pain during or after intercourse. 
• Painful Bowel Movements or Urination: Especially during menstruation, if endometriosis affects the bowels or bladder.
• Heavy Periods (Menorrhagia): Excessively heavy flow or periods lasting longer than usual.  Spotting or intermittent bleeding between menstrual cycles.

Other potential symptoms include chronic pain that can lead to persistent fatigue or low energy.  Digestive issues include bloating, constipation, and diarrhea that may worsen during your period.  Some women experience nausea and vomiting when period pain is severe.  Still with some women, the only sign of endometriosis may be difficulty conceiving.

There’s no single “typical” presentation of endometriosis as some women have numerous severe symptoms, while others experience only mild discomfort.  If you suspect endometriosis based on these symptoms, consider reaching out to me for a more personalized conversation of what you’re going through. 

What is Endo Belly?

Endo belly is a term that’s been adopted to describe the stomach bloating that in some cases accompanies women with endometriosis.  In clinical language we would characterize endo belly as abdominal distention, meaning due to internal pressure, the stomach region is enlarged or swollen. This distention or internal pressure can range from mild discomfort to intense pressure.

The chronic inflammation in the pelvis region caused by endometriosis can lead to tissue swelling and fluid build-up within the abdomen.   Additionally, endometriosis affecting the intestines can result in constipation,  bloating, irregular bowel habits – all contributing to the belly bulging.  The bloating often worsens around the time of menstruation due to the endometriosis-driven hormonal shifts, and can be further exacerbated by how endometriosis can wear down pelvic floor muscles.  

Helpful strategies in managing endo belly include adopting an anti-inflammatory diet focusing on whole foods, a great starting point and the most well known being the Mediterranean diet.  However there is no specific endo belly diet, so try out different changes to your diet to find out what works best for you.  

Regular exercise promotes improved blood flow and lymphatic drainage which can help decrease fluid retention and the feeling of heaviness in the belly.  Exercise encourages regular bowel movements and for those with endometriosis affecting the bowels, this can reduce bloating and constipation. Additionally, exercise lowers stress levels and improves mood, both of which can worsen endo belly is left unmanaged. 

Also women with endo belly are more likely to have insomnia and your body needs sleep to repair and restore itself.  Insufficient sleep can trigger hormonal and metabolic fluctuations increasing your body’s stress responses and ultimately worsen pain and exacerbate bloating.  

Pelvic floor therapy can be effective in releasing tension in the pelvic muscles, reducing both pain and bloating in many cases – something to consider.  If bloating is severe or accompanied by changes in bowel habits or blood in the stool, it’s time to give me or your physician a visit to rule out any other underlying causes. It’s very important to get the correct diagnosis when you have a bloated abdomen, particularly if the bloating:

• occurs frequently
• lasts more than a few of days
• is accompanied by pain

Diagnosing the cause of abdomen bloating generally involves a thorough history, possibly referrals to see a bowel specialist, and imaging to rule out ovarian cysts or other uterine issues that may be causing your bloated belly.

Endometriosis Diagnosis: Why It’s Difficult

Diagnosing endometriosis presents several challenges, leading to the frustrating delays many women experience and unlike many conditions, there isn’t a single blood test or scan that definitively confirms endometriosis. Currently, the gold standard for diagnosis is laparoscopic surgery, where a surgeon looks for and biopsies suspected endometriosis lesions. However this procedure is often not considered or put off for a myriad of reasons including:

Symptoms Mimic Other Conditions: The primary symptoms – painful periods, pelvic pain, digestive discomfort – overlap with various other conditions like IBS, pelvic inflammatory disease, or ovarian cysts and misdiagnosis occurs. 

Doctor’s Bias: This sometimes leads to misdiagnosis or downplaying a woman’s concerns as “normal period pain”. 

Variation in Presentation:  Not everyone is the same and some women with extensive endometriosis have minimal pain, while others with a few isolated implants suffer a great deal. This inconsistency makes it harder to pinpoint when to suspect the disease.

Looking in the Right Place: Endometriosis beyond the pelvic area (bowels, bladder, etc.) is often missed due to its less typical presentation and may require specialized imaging or procedures for detection.

Normalization of Pain: Women are often taught to tolerate menstrual pain, leading to underreporting of severe symptoms and dismissal by some healthcare providers.  Endometriosis is often called the “Invisible” disease because it’s internal and others (and sometimes a woman herself) may underestimate the extent of her suffering.

Many primary care doctors are unfamiliar with the nuances of endometriosis, delaying referrals to specialists with expertise.  As a consequences of diagnostic delay in treatment endometriosis often progresses, increasing pain severity, potentially causing further damage to pelvic structures and fertility. Being misdiagnosed can lead to ineffective treatments or unnecessary procedures.  The uncertainty and feeling unheard by doctors takes a significant mental and emotional toll on women.

Endometriosis Treatment 

There is no one-size-fits-all protocol for endometriosis treatment as the condition is highly individualized and aims to manage your unique symptoms, slow disease progression, remove the disease entirely or improve fertility – and sometimes all of the aforementioned simultaneously. Nonetheless let’s unpack the predominant approaches to endometriosis treatment:

Managing Pain and Symptoms.  NSAIDs such as naproxen, ibuprofen, and aspirin (such as Disprin) can help manage mild to moderate pain. Prescription Medications: Stronger painkillers may be prescribed for severe, unmanageable pain.

Hormonal Therapies:  Birth control pills, patches, or rings can help regulate periods and reduce bleeding, which may reduce pain.  Some women have found  progestin hormone options like injections, implants, or the IUD, stop periods entirely, providing longer-term relief in some cases.  Gonadotropin-releasing hormone (GnRH) agonist (Lupron)  temporarily suppresses the ovaries, creating a low-estrogen status thereby shrinking endometriosis lesions. However, it comes with its own set of side effects such as menopausal symptoms and bone loss, making it a less desirable option. It is important to note medications won’t make the endometriosis go away, they only help control the symptoms. Therefore, upon stopping hormonal therapy, the symptoms will likely recur. 

Laparoscopic Excision Surgery: Considered the gold standard for removing endometriosis lesions. Skilled excision has a greater impact on pain and fertility than simple ablation (burning) of lesions.  In severe cases more extensive surgery may be required involving removing parts of the bowel, bladder, etc., often requiring collaboration with other surgical specialists (colorectal, urology).

In the presence of adenomyosis, a hysterectomy or removal of the uterus is considered, but this ends the possibility of fertility. A hysterectomy doesn’t cure endometriosis though as endometriosis is typically disease outside the uterus. Please let me know if you’d like a deeper dive into any of these treatment options, want to discuss their pros vs cons, or have questions about a specific treatment you’re considering!

Laparoscopic Excision Surgery for Endometriosis

Laparoscopic/ Robotic excision surgery is a minimally invasive surgical approach designed to remove endometriosis lesions and often a key component of endometriosis treatment.  We specialize in this procedure which involves making a few small incisions in the abdomen, then inserting a laparoscope (thin tube with a camera and light) to visually inspect the abdomen and pelvis.  Additional surgical instruments are then used to manipulate and remove endometrial tissue.

Laparoscopic excision involves precisely cutting out endometriosis implants, root and all. This is different from ablation where lesions are simply burned off the surface.  Through meticulous inspection of the entire pelvic region, any endometriosis on the ovaries, fallopian tubes, pelvic lining, and sometimes other nearby organs is identified and excised (cut out).

Excising endometriosis lesions decreases inflammation, leading to a potential significant reduction in period pain, chronic pelvic pain, and pain during intercourse.  Removing lesions and adhesions (scar tissue) can restore normal anatomy and improve the chances of getting pregnant naturally or with assisted reproductive technologies like IUI and IVF.  While not a cure, laparoscopic excision can slow the progression of endometriosis and reduce the risk of symptom recurrence or worsening in many cases.  Ideal candidates for laparoscopic excision surgery are: 

• those with pain that has not adequately responded to medication.  
• women struggling with infertility where endometriosis is a likely contributing factor.  
• those with reason to suspect endometriosis has infiltrated organs like the bowels or bladder and will benefit from a better assessment and treatment.

Laparoscopic excision surgery is usually quicker than traditional surgery and most patients can return to their normal activities within a few weeks. Laparoscopic excision surgery may be combined with hormonal therapy or other approaches for continued symptom suppression and to reduce recurrence risk. It’s important to note if pain is multifactorial (due to coexisting conditions, etc.), surgery might not eliminate pain entirely and endometriosis can grow back in 25-30% of patients, sometimes requiring further treatment down the line.  

Endometriosis & Infertility: Endometriosis is a leading cause of infertility as it can disrupt ovulation, block fallopian tubes, and or interfere with an embryo implanting.  Visit our page on Endometriosis Infertility for a comprehensive discussion on endometriosis and achieving pregnancy.