What is Endometriosis?
Endometriosis is a long-term women’s health problem where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. The main symptoms of endometriosis include pelvic pain and difficulty getting pregnant. The location of endometriosis can change, but it often appears in the ovaries, followed by areas at the back of the womb, the front and back of the womb and the uterosacral ligament, connecting the womb to the spine.
Endometriosis can also affect the intestines and urinary system, including the pipe that carries urine from the kidney to the bladder (ureter), the bladder itself, and the tube through which urine passes during urination (the urethra). But it’s not just confined to the pelvic area – endometriosis can harm structures outside of the pelvis, like the chest cavity, the sac around the heart, or even the brain and spinal cord.
The cause of endometriosis is not clear, but there are several theories. These include the Sampson’s theory, coelomic metaplastic theory (which suggests cells transform into different types), the stem cell theory, the Müllerian remnant theory (a leftover tissue theory) and the vascular and lymphatic metastasis theory (a kind of spread via blood or lymph system theory).
What Causes Endometriosis?
Endometriosis is a medical condition that doesn’t have a clear cause. However, several theories have been proposed to explain how it happens. One of the most common theories, proposed by Sampson, suggests that during menstruation, some cells can flow backward from the Fallopian tubes, attach to the wall of the abdomen and start to grow. This backward flow, known as retrograde menstruation, is quite common among women of reproductive age.
Another theory, proposed by Meyer, suggests that the cells lining the abdomen, under particular conditions, can change into endometrial tissue – the kind normally found in the uterus. This could explain why some women without a uterus or endometrium can still have endometriosis.
Additional theories include the Müllerian remnant theory, which suggests that remnants from the early development of the uterus could mimic endometriotic tissue in certain areas of the pelvic floor. There’s also a theory that endometrial tissue can infiltrate the lymph nodes and blood vessels and from there, spread to reach distant parts of the body like the brain, lungs, or lower abdomen.
Furthermore, some researchers believe that endometrial stem cells, found in menstrual blood and endometrial lesions, might be responsible for causing endometriosis. They suggest that these cells might spread to the pelvic cavity during menstruation and contribute to the development of the disease.
Interestingly, researches have also looked into the role of oxidative stress and genetic factors in causing endometriosis. Oxidative stress, caused by an imbalance between harmful and beneficial molecules in our bodies, can damage cells and possibly lead to endometriosis. In addition, inflammation, genetics, and reactions to hormones can influence the development of this condition.
It’s also observed that in patients with endometriosis, there are increased levels of certain inflammatory substances, leading to ongoing inflammation in the affected area. Removal of these lesions can decrease these substances and reduce inflammation. Hormones, particularly estrogen, play a crucial role in the growth of endometriosis. Furthermore, changes in the way genes are expressed and read may also contribute to endometriosis, as seen in teens and younger women with a family history of the disease. It’s also believed that some specific genes may make certain women more likely to develop the condition. However, more research is needed to fully understand this aspect.
Risk Factors and Frequency for Endometriosis
Determining the exact prevalence of a disease called endometriosis can be challenging. This is because many women do not show symptoms and therefore, go undiagnosed. Additionally, a specific test known as a laparoscopic examination is needed for a definitive diagnosis. However, it’s estimated that around 10% to 15% of women of childbearing age have this condition. This percentage increases to around 70% in women experiencing chronic pelvic pain.
In the United States, recent data reveals that of all women aged 18 to 45 years who were admitted to hospital for urinary and reproductive issues, 11.2% were diagnosed with endometriosis. Around 10.3% of women who have had gynecologic surgeries were found to have endometriosis. This disease places a significant financial burden on healthcare systems and patients. In Europe, for example, the annual cost per patient, which includes healthcare costs and productivity loss, is around €10,000. In the U.S., healthcare costs for individuals with endometriosis are 63% higher than for the average woman.
- Endometriosis often goes undiagnosed because many women do not have symptoms.
- This condition affects about 10%-15% of women of childbearing age and up to 70% of women with chronic pelvic pain.
- 11.2% of hospitalized women aged 18 to 45 in the U.S. diagnosed with this disease.
- The financial burden of endometriosis for each patient is €10,000 annually in Europe, in the U.S., it’s 63% higher than average healthcare cost.
Diagnosing endometriosis is often delayed, causing women to endure pain and long-term effects, such as infertility. Among women who are unable to have children, up to 50% have been found to have endometriosis. For teenagers, this statistic is about 47% for those who have had a laparoscopy (a type of surgery using a small incision) due to pelvic pain.
Factors such as beginning menstruation at a young age, having shorter menstrual cycles, experiencing heavy menstrual bleeding and not having given birth can increase a woman’s risk of developing endometriosis. These factors support the understanding that endometriosis is closely tied to a woman’s hormone levels.
- Diagnosis of endometriosis is often delayed, leading to chronic pain and infertility.
- Up to 50% of infertile women and 47% of adolescents having laparoscopy for pelvic pain have endometriosis.
- Early menstruation, shorter menstrual cycles, heavy bleeding, and not giving birth increase endometriosis risk.
On the other hand, there are factors that can decrease the risk of endometriosis. These include having been pregnant, extended breastfeeding, current use of oral contraceptives, having a procedure known as tubal ligation, and smoking. Interestingly, while smoking is generally harmful for health, it is associated with a lower risk of endometriosis.
- Being pregnant, extended breastfeeding, using oral contraceptives, tubal ligation, and smoking can lower the endometriosis risk.
- Despite its overall harmful effects, smoking appears to reduce the risk of endometriosis.
Signs and Symptoms of Endometriosis
Endometriosis is a condition that mostly affects women in their mid to late twenties. It is more common in white women than African-American women. Symptoms can vary and include painful sex, discomfort during periods, pain while peeing or pooping, and trouble getting pregnant. The pain can come and go and get worse over time. Some women with endometriosis may have a condition called hyperalgesia, where even non-painful things can cause severe pain. In severe cases, the condition can damage nerves and release chemicals that cause pain. There are three types of endometriosis: lesions on the abdomen lining, cysts in the ovaries, and deep infiltrating endometriosis. The severity of symptoms does not always match the extent of the disease. Endometriosis can also cause gastrointestinal symptoms like diarrhea and bloating. Cysts in the ovaries bleed internally and have a unique appearance on imaging. Deep infiltrating endometriosis can affect the bladder, ureter, and bowel. Superficial peritoneal lesions usually don’t cause symptoms but can be found accidentally. The diagnosis can be complicated if there is inflammation or bleeding.
Testing for Endometriosis
Often, diagnosing endometriosis can take between 4 to 11 years after the start of symptoms. This delay can happen in any country regardless of the wealth or healthcare available. The late diagnosis is usually because there is no specific test or indicator to detect the disease early and because its symptoms can be confused with normal menstrual symptoms or other stomach or gynecological issues.
To diagnose endometriosis properly, doctors need to ask detailed questions about your medical history and do a physical check-up. Things like having a family member with the disease, pelvic pain, harmless ovarian cysts, past pelvic surgeries and fertility problems can all make the doctor suspect endometriosis.
Different signs can be found during a physical exam based on where the endometriosis is and how big it is. These can include tenderness during a vaginal examination, firm nodules that can be felt in the back of the vagina, masses in the area next to the uterus, and a uterus that can’t move freely. However, not having these signs doesn’t completely rule out endometriosis.
The most trusted way to diagnose endometriosis is by doing a laparoscopy, a procedure where the doctor uses a camera to look inside your abdomen, along with taking a small sample of tissue to examine under a microscope. Endometriosis can look different in each person: it may be red, white or clear little sacs or black ‘powder burns’ or ‘gunshot’ marks.
There is some debate about whether we always need to confirm endometriosis by looking at a tissue sample because sometimes visible signs don’t match up with what’s seen under a microscope. Simply seeing endometriosis during a laparoscopy without looking at a tissue sample may not be enough to diagnose it, as it depends on the doctor’s surgical skill and judgement. Because a laparoscopy is a surgical procedure with potential risks, there’s a push to start using non-surgical methods for diagnosing endometriosis to decrease the time between the start of symptoms and getting a diagnosis.
Less invasive methods like magnetic resonance imaging (MRI) and transvaginal ultrasound (TVUS) have been tested to see if they might be useful in diagnosing endometriosis. TVUS is quite good at identifying endometriosis in the ovaries and allows the doctor to look down into the pelvis. Endometriosis may show up as uniform formations with a specific look and low-level echoes. TVUS might also help identify endometriosis further inside the body, in places like the rectovaginal septum, the uterosacral ligaments, the pouch of Douglas, and the wall of the vagina.
Researchers have tried to see if certain markers in the blood, tissue or urine could help diagnose endometriosis. One marker, CA125, is higher in patients with endometriosis, but it also goes up with other diseases and doesn’t tell us where the endometriosis is, so it’s not enough to diagnose the disease on its own. Some tiny particles called miRNAs that control which genes are turned on and off may have a role in causing infertility and endometriosis, but more research is needed to understand this process better and whether these could be useful for diagnosis.
Treatment Options for Endometriosis
Endometriosis can be treated in two main ways, through medication or surgery. Currently, there isn’t a specific drug that can stop endometriosis from progressing. However, certain hormonal and non-hormonal drugs can help relieve the symptoms and may increase fertility rates. Treatment can begin based on symptoms alone, even if the disease hasn’t been confirmed with a lab test.
It’s important to remember that endometriosis is a chronic disease, so the goal of treatment is to manage symptoms, not to cure the disease. Also, just because a treatment works doesn’t mean the patient definitely has endometriosis. Physicians often treat women experiencing ongoing pain after a comprehensive review of their medical history and ruling out other conditions, even if medication doesn’t improve fertility.
First-line drug treatment for endometriosis might include non-steroidal anti-inflammatory drugs, progestins, or combined hormonal contraceptives. Hormonal contraceptives can be used continuously or in cycles and work by reducing LH and FSH levels, which leads to the thinning and shrinking of the endometrium. Quitting oral contraceptives might lead to a return of endometriosis pain. Progestins can help by preventing ovulation and creating an environment low in estrogen, and by binding directly to the progesterone receptors, causing the endometrium to thin and shrink. Potential side effects include weight gain and acne. Non-steroidal anti-inflammatory drugs can also effectively relieve endometriosis-related pain and are easy to access and have fewer side effects.
Another option for treatment is a three-month trial of gonadotropin-releasing hormone (GnRH) analogs, which work by suppressing symptoms. GnRH works by binding to pituitary receptors and downregulating the pituitary-ovarian axis, resulting in decreased levels of LH and FSH, suppressed ovulation, reduced estrogen, and endometrial shrinkage. But, side effects do exist, such as bone loss, hot flashes, vaginal dryness, and headaches. Danazol, an androgen, can be used to relieve symptoms, but it can increase testosterone levels, leading to side effects like excessive hair growth, permanently deepened voice, or acne.
Surgical treatment is often chosen to increase fertility potential and provide relief from pain. However, it does carry some risks. Surgery is often considered when medication isn’t working or isn’t an option. The aim during laparoscopic surgery is to remove all endometriotic lesions and adhesions, thereby reducing inflammation in the pelvic area and increasing chances for conception. But, handling ovarian endometriomas can be complex, since research suggests that removing the cyst can reduce the ovarian reserve and follicle count. Despite this, cystectomy is generally preferred over drainage or ablation, due to better pain management and lower reoccurrence rates. The final decision on treatment should be made after thorough discussion between the patient and doctor, considering all possible benefits and risks.
What else can Endometriosis be?
Endometriosis often presents with symptoms like trouble getting pregnant and persistent pain in the lower belly, which occurs in cycles. To diagnose this, doctors need to rule out other conditions that may cause similar problems.
These conditions might be related to the urinary, reproductive, or digestive systems. For instance, issues with the reproductive system could include an inflammation of the pelvic region, complications from past surgeries, inflammation of the inner lining of the uterus or painful menstrual cycles. Certain conditions such as enlarged uterus due to adenomyosis, fibroids or a narrow cervix can also cause similar symptoms.
There are also digestive issues that could be causing the pain, including constipation, irritable bowel syndrome, or inflammation of the bowel. Additionally, certain problems with the urinary system like a condition known as interstitial cystitis or persistent inflammation of the urinary tract could be mistaken for endometriosis.
Lastly, the doctor would also need to ensure that the pain is not caused by any nervous system disorders or psychological factors.
What to expect with Endometriosis
Women with endometriosis may face challenges when trying to conceive and are more likely to experience miscarriages and dangerous pregnancies that occur outside the womb compared to those without the condition. Additionally, for some women, the painful tissue caused by endometriosis can shrink back on its own without any treatment, which is the case for about one-third of women with the disease.
The recurrence rates of endometriosis after surgery can vary widely, with estimates ranging from 6 to 67%, and it’s not entirely clear which factors are likely to predict a recurrence. The recurring tissue can stem from new cells or leftover tissue from the disease.
Medical therapy can be very helpful in managing the disease, but it doesn’t work for everyone. Despite treatment, between 5% and 59% of patients may still experience pain even at the end of the therapy. Furthermore, even after stopping treatment, between 17% and 34% of patients have reported a return of pain.
Possible Complications When Diagnosed with Endometriosis
Endometriosis can lead to many complications such as infertility or reduced fertility, chronic pain, and other constant symptoms which can dramatically lower the quality of life. The range of these symptoms is vast. They can include severe menstrual pain, pain during intercourse, and painful bowel movements. Endometriosis can also pave the way for complications during surgery and anatomical changes due to possible adhesions. It may cause bowel or bladder issues and, in cases of ovarian endometriomas, may even promote the development of cancer.
Studies argue over the relationship between endometriosis and infertility. However, research suggests that infertile women are 6 to 8 times more likely to have endometriosis than those who can conceive.
Common Complications:
- Infertility or subfertility
- Chronic pain
- Debilitating persistent symptoms
- Decreased quality of life
- Surgical complications
- Anatomical changes
- Bowel or bladder issues
- Potential progression to cancer
Chronic pelvic pain is another common symptom, and between 71% to 87% of women with chronic pelvic pain have endometriosis. This disease can drastically affect general well-being and disrupt daily routines, emotional stability, sexual health, and productivity at work. Women with endometriosis also report higher stress levels, poor sleep quality, and diminished physical activity compared to healthy women.
Endometriosis can also cause bowel issues like constipation and other digestive problems. These do not necessarily arise from the presence of endometriotic nodules affecting the rectum, as surgical treatment for rectal endometriosis may still leave patients with these symptoms.
Finally, while endometriosis was initially deemed harmless, later research has linked it to a higher risk of ovarian cancer.
Preventing Endometriosis
Even after undergoing surgery, patients often experience a return of their symptoms if they stop their prescribed treatments. It’s important for patients to stick to their medical treatment plan for several months, despite any potential side effects they may experience. Women who have had surgery should follow their doctor’s advice closely after the procedure to avoid the risk of complications, like infections.
In situations where symptoms return, it’s crucial that patients seek out their healthcare provider for further examination. However, women who have been diagnosed with this condition should be mindful of potential complications. These can include long-term health issues, such as infertility and chronic pain in the pelvis.